I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: gothiclovemonkey on December 20, 2013, 08:28:22 AM
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I really dont get it. Doctors thinking they know everything. Ok, yes you went to school specifically for this problem, BUT this is MY body. I may not be the cookie cutter person you are used to, ever think of that???
Thursday, dialysis, worst yet. I ended up being taking out by ambulance.
They claim it was a panic attack. I thought it was the end. Maybe it ended up in said panic attack, but that wasnt the case to start with.
So here is what happened.
For the past few weeks, Ive been coming in at under 1 kilo over my dw.... But I have NOT changed anything about how much fluid or anything like that and typically ill have 3 kilos over the weekend... not the case lately.
Ive been having a lot of trouble breathing too. (sign of fluid overload, yes?)
On the other hand, when we try to challenge I do cramp. BUT I cramp at home just as often as I do there, and my old dr did not think it was dialysis causing my cramping but something else entirely. Well, this clinic and dr wont hear it. they dont believe me and treat me like im an idiot.
My bp was extremely high yesterday too (another sign, no?) and they asked if id taken my meds, I said "YES but I need a refill because im almost out, had to go to walgreens and get a few to last until you guys give me a scrip!"
Somehow that statement was relayed to my dr as I havent been taking my bp meds...........wtf?!?!
So im pretty frustrated already. They only took .6 off during my treatment, so the breathing was no better. I was getting ready to leave and I was crying. two of the gals came in and started talking to me about everything, Id try to explain but they think they know everything so they would interupt or tell me straight up that im wrong.
I dont doubt that at that point it became a panic attack. I really thought i was going to die, and they were being so rude. still talking down to me while im fighting to inhale. thats not nice. the dr was there but he REFUSED to come out and see me!!!!
That ambulance was called, i didnt really want to go but i did. They were being so snotty and rude when they were talking about me to the emts. i couldnt believe it. ive never been so upset. it was absolutely making things so much worse!
When they get me in the ambulance the guy tells me he is glad i chose to come so he could get me out of that situation. (that kind of tells me he also noticed how they were treating me)
the hospital was really kind to me. they got me something for my severe nausea, and took some blood, xrays, you know the usual. they said my potassium was a bit lower than they prefer and told me to go eat a banana when i get home. LOL a banana! (btw, it was heavenly, i hadnt had one in like 2 years!!!)
They sent me home and said if anything else arises to come straight back. I was relieved that I wasnt dying (i sure thought I was lol) but frustrated that im going home without anything being done as far as the dialysis goes.
now i have to go back to dialysis and face those rude people. I do not want to. i know i know i "have " to but jeez, that was horrifying and they made that happen! if they had just opened their damned ears and closed their mouths for a minute, i highly doubt this would have happened. they all think everyone is cookie cutter, and we arent! Ive had this happen before, dr didnt want to believe i had 50 some odd lbs of fluid on me, but i sure did. i had no fluid in the "normal" places. it was alllll in my tummy area. none on the lungs, and my ankles werent all that swollen either. but i knew how i felt, and low and behold i was right. so it really irks me that they wont listen. I KNOW MY BODY
what the heck can i do? the clinic manager, my dr, and a tech were the ones involved yesterday.
who wants to put their life in the hands of people like this????? i dont. i really do think they will kill me, if they dont listen to me. i cant breathe. my tummy is huge (just like last time) and i have been sooo nauseated and vomitting too.
im really scared. someone please help me.
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I'm so sorry. That sounds awful. I wish I knew what to tell you. Is there a different doctor you can go to and say I can't breathe? Maybe a pulmonologist or a cardiologist? Someone needs to investigate this. You need some other tests.
As far as dialysis, it must be scary but not going isn't an option. Stick up for yourself as calmly as possible and get your treatment over with. I don't know if it would help but you could complain to your area network.
Anytime you think your breathing is too scary, go to the ER. Take care of yourself. Maybe someone else has better advice. We want you to be ok. :grouphug; :grouphug;
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I'm so sorry you are going through that. I truly know how your feel when it comes to the staff. They can be very insensitive when it comes to the patients as if we don't have enough problems. Anyhoo, is it possible to get a hold of your results? See what the numbers are as your nausea can come from low numbers. Also, if you are filling water overload, is it possible to ask your doctor for some water pills so you can get some of the water out? It is normal to feel scared as you don't know what's going on with your body as this point. You have to take control of your health and not leave it up to the nurses and technicians. However, I was always told to go with your instinct. If you feel something is wrong go to your primary doctor and see what he or she tells you. Sometimes the kidney doctor cannot determine what's wrong when he or she really does not want to be bothered. He should have came out of his office to see if you were alright. I would be very nervous to know he doesn't really care based on his actions. When in doubt go check it out. :cuddle;
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I am so sorry about how you were treated. Not all of us are like that in the medical profession.
My first thought is asking if they checked your urine (if you have any) or looked for a urinary tract infection. Your symptoms can sometimes be caused by a UTI. It can effect the whole body and cause nausea and cause mental changes including panic. It can also raise blood pressure.
The fluid around your belly can be from fluid overload. I have seen the same in my wife. She never swells at the ankles or hands but with fluid overload her belly distends like yours. It often happens when she has an infection. so again I have a concern about an occult(hidden) infection such as a UTI in your case.
I would try talking to your social worker about all this if possible. See if she/he can be of help. Your treatment by these people was nasty and you deserve better.
Any chance of switching to home hemo where you can control your own treatment? It would give you a sense of empowerment.
Let me know if I can help any more.
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Write up what happened and how it made you feel. Give it the coordinator of your clinic. They will have to respond to it in 72 hours.
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im pretty sure it was the coordinator, or maybe manager im not sure what her title is but she was the problem. her and a tech
i may have to do HH as an option, even though id prefer not to. there isnt another d near here, it would be an hr drive there and an hr back...
ive been to er about this a few times, they dont seem to want to do anything since they think its fluid overload.
last time i saw the dr (i see him once a month) i told him i thought my dw needed changed, the er dr said i have congestive heart failure and need fluid taken off to be better, they cant do anything... the neph said, "But do you? really?" Um, Idk jackass, im not a dr, but thats what the er dr said... *shrugs*
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Do you have a primary care doctor?I found the neph sometimes wont treat you for something not kidney or dialysis related.
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yes i do, and hes working on my non dialysis stuff, but my neph isnt doing HIS job either!
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First of all.....
:grouphug; :grouphug; :grouphug;
Perhaps, if you can find some documentation that fluid buildup can go to your abdomen and give it to them??
I hope you can get this sorted out.
:cuddle;
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i may have to do HH as an option, even though id prefer not to. there isnt another d near here, it would be an hr drive there and an hr back...
Just curious - why would you rather not do home hemo?
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my house is kind of small, and if its anything like the supplies for pd, it will be a tight fit lol and i really really really do not like the idea of sticking myself at all.
and lastly, having someone here with me presents a problem...
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If there is a chance of congestive heart failure, its time for a cardiologist. Maybe that would help sort this out. A cardiologist can test your heart and look from a different perspective then nephrology.
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:grouphug; I'm so sorry you had such a shit time gothic.
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All I can say is I can totally relate. I've dealt with similar issues and whenever I ask questions I get treated like I'm not complying. The nurses exaggerate or sometimes even outright lie in their reports. It's so aggravating and if you speak up they make YOU out to be the liar or treat you like you are crazy.
One particular situation I had was I was taking a over the counter medicine called Prilosec for severe heartburn. After a few days I had no acid reflux. My doctor prescribed me a generic version of this medication and my heartburn came back. There wasn't one single day where I wasn't in severe pain. When I told my doctor this she said it was impossible because both medications are exactly the same. She tried to say it was all in my head. Well 2 weeks ago I went out and bought the more expensive Prilosec and guess what? My heartburn went away completely again. It's my damn body for crying out loud. I don't care where she went to school.
I don't have any advice because I'm still going through pretty much what you are going through. I wish I had good advice. Hang in there. You are not alone. We all need to stand up for ourselves. It doesn't help when these medical professionals aren't taking our complaints seriously.
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All I can say is I can totally relate. I've dealt with similar issues and whenever I ask questions I get treated like I'm not complying. The nurses exaggerate or sometimes even outright lie in their reports. It's so aggravating and if you speak up they make YOU out to be the liar or treat you like you are crazy.
One particular situation I had was I was taking a over the counter medicine called Prilosec for severe heartburn. After a few days I had no acid reflux. My doctor prescribed me a generic version of this medication and my heartburn came back. There wasn't one single day where I wasn't in severe pain. When I told my doctor this she said it was impossible because both medications are exactly the same. She tried to say it was all in my head. Well 2 weeks ago I went out and bought the more expensive Prilosec and guess what? My heartburn went away completely again. It's my damn body for crying out loud. I don't care where she went to school.
I don't have any advice because I'm still going through pretty much what you are going through. I wish I had good advice. Hang in there. You are not alone. We all need to stand up for ourselves. It doesn't help when these medical professionals aren't taking our complaints seriously.
I am a doctor and I agree on Prilosec. I tried the generic also after years on the name brand and it didnt work as well. I think we all assume generics are just as good but perhaps on over the counters they arent. It could be all generics are suspect but I hope not . Interesting point though.
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All I can say is I can totally relate. I've dealt with similar issues and whenever I ask questions I get treated like I'm not complying. The nurses exaggerate or sometimes even outright lie in their reports. It's so aggravating and if you speak up they make YOU out to be the liar or treat you like you are crazy.
One particular situation I had was I was taking a over the counter medicine called Prilosec for severe heartburn. After a few days I had no acid reflux. My doctor prescribed me a generic version of this medication and my heartburn came back. There wasn't one single day where I wasn't in severe pain. When I told my doctor this she said it was impossible because both medications are exactly the same. She tried to say it was all in my head. Well 2 weeks ago I went out and bought the more expensive Prilosec and guess what? My heartburn went away completely again. It's my damn body for crying out loud. I don't care where she went to school.
I don't have any advice because I'm still going through pretty much what you are going through. I wish I had good advice. Hang in there. You are not alone. We all need to stand up for ourselves. It doesn't help when these medical professionals aren't taking our complaints seriously.
I am a doctor and I agree on Prilosec. I tried the generic also after years on the name brand and it didnt work as well. I think we all assume generics are just as good but perhaps on over the counters they arent. It could be all generics are suspect but I hope not . Interesting point though.
I was thinking the same thing. How many other medications aren't working as well because they are generics? It's kind of scary to think about.
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There are some meds, such as cyclosporin, that you can either do the brand or the generic but once you pick one you have to stick with it. They can adjust your dose for that brand or generic. But you can't switch back and forth or your dose will be screwed up.
On the other hand, some drugs are pretty easy to duplicate. I worked at a generic drug company for 15 years. Some things were easily replicated, tested, submitted to FDA and approved. Others we struggled with for years trying to get an equivalent. It's complicated. Sometimes the generic works great, others not. Often it's how it works in YOUR body that makes the difference.
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the last hour of my treatment i start feeling really crappy and weak, and my head starts hurting.
im so miserable, and the ones who actually do seem to care and want to help, cant. it makes me feel bad for them too...
i just dont know what to do
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I had trouble finding a gyn who would listen to me about cramps in the past. What finally worked was writing down each symptom, what I do about it, and how it affected me. It worked!
Have you tried this already? It takes the emotional part of it out of the picture so they have to react to your words instead of the emotions and it puts it in your record that you are compliant and you're asking for their help in finding an answer. Keep it short and simple, just a bulleted list that hits the issues and questions you know they'll ask about, like:
I a very frustrated and I am asking for your help in resolving these issues:
I take my blood pressure medications as prescribed. My blood pressure is still too high and spiked to xxx/xxx on date.
I regularly have difficulty breathing. This is very uncomfortable scarey. I feel it has triggered the panic attack that sent me to the hospital.
I drink xx amount/day and I am xx over my dry weight. Only x amount of fluid was pulled off during treatment, leaving me x-amount over my dry weight.
Cramping is an issue, but my neph does not believe it is due to pulling off too much fluid. The cramping also happens at home during normal daily activities.
I'd leave their *sshole-ness out of the letter, no matter how tempting it probably is to lay into them. At least I'd want to :Kit n Stik; severely! Bite your tongue and keep your goals in mind. You might get better results by trying to gain their empathy.
I hope you feel better soon! It sounds miserable.
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GLM - I am so sorry you are having all these problems and all of the pain, stress and worry they are causing. :cuddle;
I agree with Deanne that you need to submit a letter addressing your concerns about your symptoms and the care you are (or are not) receiving at your center. Make sure you keep a copy of the letter for your own records.
I am seriously concerned that you have been told you have Congestive Heart Failure but were not referred to a cardiologist. This is not a diagnosis that should be thrown around or taken lightly. If the ER doc told you he thought you had CHF it should be recorded in the record of that ER visit. Call the hospital and request a copy of the record. Ask your primary care doc to refer you to a cardiologist. You are describing some classic CHF symptoms that need to be investigated.
Ask your primary care doc to test you for a UTI. As obsidianom said UTI's can cause symptoms that would seem totally unrelated to your urinary tract.
Please be proactive about this, no one is going to fight for you if you do not fight for yourself. You have some really good things happening in your life right now and you deserve to be able to enjoy them!
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im so sick of feeling like this and nothing happening, i tell the doctors everything and they do nothing.
not to be disgusting but i havent even consumated my wedding yet because of how i feel!!!! Thats horrible!!! I cant breathe at all... i am afraid to risk even trying.
why does this have to be so hard????? why cant they just listen to me and trust that i know my own body?????
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im so sick of feeling like this and nothing happening, i tell the doctors everything and they do nothing.
not to be disgusting but i havent even consumated my wedding yet because of how i feel!!!! Thats horrible!!! I cant breathe at all... i am afraid to risk even trying.
why does this have to be so hard????? why cant they just listen to me and trust that i know my own body?????
You have gotten some good advice from a lot of people here and based on your last post its time for action.
You need a cardiology consult NOW if you are that scared and cant breathe. In our hospital if you come to the ER with chest pain or any question of a heart problem they get you in immediatly and get cardiology involved. If you cant get your own doctor to get you to a cardiologist or cant get an appt on your own quickly, then go to the ER and claim chest pain and difficulty breathing. Tell them you are concerned about your heart. Focus on that when you get there and ask to see a cardiologist on call. This is something you can do TODAY.
Edited: fixed quote tag error- kitkatz, Admin
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:'( I think it's time you find a Dr who will listen to you. When Otto waas doing home-hemo and having problems no one wanted to listen it was HORRIBLE, they treated him like he was doing something wrong. But we have a GREAT GP who listened and ran some test's and realized Otto's heart was the problem, we switched back to in-center and also now also have a GREAT heart Dr who has put the in-center Dr in his place who no longer can touch any of his bp meds. Otto say's he always felt like they looked at him with 1 foot in the grave and he was doing everything to keep both feet out. Otto's staff at in-center is AMAZING (except for the Dr) Hope this gets worked out for you :cuddle;
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So sorry Goth, that you had to go through such an ordeal! It just isn't right.
Yes, the doctors and nurses and Techs go to school to learn their trade, but we do know our bodies better than they do, and they SHOULD listen to us. If I were you, I would really raise a stink about it to the Facility Admin; or the Medical Director. If they were treating you that rudely and with disrespect, then by all means...BITCH about it! Even if you were 100% wrong, they should still listen to you, and act as if they care about you....!
Good luck! In fact, switch clinics, and come down to Florida....we'd love to have you!
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When you feel sick, everything can seem so hard. But please do whatever you have to to find a cardiologist. I think you really need some different advice. Your nephrologist just can't help with this. Do you have a primary care doctor? Call for an appt and that doc can test for the UTI and refer you to a cardiologist. If you don't have one, call a cardiologist's office and talk about your ER visit and ask for help. It's also easy to get a UTI test at your local urgent care.
Please get help. Don't wait for your nephrologist. He won't know what to do for your heart anyway.
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Just an update. GLM is in the hospital for her heart. I hope they get it all sorted out for her....
:cuddle;
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I am glad she went in. I sent her a private message practically begging her to go to the ER and ask for cardiology immediatly. She was actually scaring me with her symptoms which suggested cardiac issues. Remember everyone, just because you are on dialysis or have renal disease, dont forget there can be other issues superimposed over that. Cardiac problems are very common with renal failure/dialysis.
I hope she is getting a good thorough work up. I wish her the best.
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I hope they can figure things out. She sounded like she was really suffering.
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:grouphug; :grouphug; :grouphug;
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GLM, hope you recovery very soon, be strong , fighting.:grouphug;
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;D you have all the right to control your treatment and I mean every aspect off your treatment I have bad cramps to so when I feal just the slightest twing I tell them to slow it down and I have learned about the machine so I know what buttons do what and I watch them very close specially if a new hire starts they think they everything iv only been doin this for 11 months now I have also figured it out that being loud not rude but you better lisen to me loud lol will hurry them up don't worry its all about you but you also have to have the same attitude at home by changing every bad diet habit you have diligence is the OUR only key to life im scared to as a lot of us have been and still are I think..... I only 45 yrs young I sure hope I have helped an some sort of a way ....I not to good at this typing stuff
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GLM - I'm sorry to hear you are I the hospital, but glad that your symptoms will be investigated and hopefully resolved. I've got my fingers crossed, have thrown salt over my left shoulder, rubbed my lucky rabbit's foot, sent positive, healing energy your way and offered up a prayer or two that the tests will give you a definitive answer about what is causing your symptoms. After all that activity I'm exhausted, but I hope you are feeling better!!!
:cuddle;
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She has 8 kilos removed in 2 days. She says she will be there for a week as they continue to remove the fluid around her heart. I think she is feeling some relief.
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wow, 8 kilos in two days, that is an awful lot. That is a lot of wear and tare on one's body.
We wish you the best and pray from a quick and speedy recovery. Maybe when you go back to your clinic, they will listen to you this time.
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:cuddle; Get well soon, GLM!
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im baaaaaaaaaaaaaaaaaaaaaack!~
Thank you all for the well wishes!
I did go to ER at the urging of a few fine folks here, and they transfered me to a bigger hospital.
I have had 12.5 kilos removed,
they said i had a lot on my heart. i still have some but not much left
i am hopefully getting a new set of drs (the ones i had at the hospital) i just have to tell me current idio... i mean dr that i dont want him anymore.
had davita listened to me, this wouldnt have happened. im pretty irked at them.
im definitely filing a complaint, some people think i should sue... but im not really the suing type. but i tell you, if they give me ANY crap when i go in thursday, i think ill probably consider it...
they do NOT want to irk me further. they nearly killed me.
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I'm very glad and relieved to see you back! It sounds like you feel better overall. :clap;
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Yay! GLM is BAAAACK!
:2thumbsup; :2thumbsup;
I'm glad you are out of the hospital. And I bet you are feeling much, much better!
Aleta
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When I was in center and left to do NxStage, 20 pounds of water was removed and my blood pressure dropped. I was taken off of blood pressure pills and praise God I have not taking them since. Its now going on three years since I’ve joined NxStage. I believe that in-center machine sometimes does not remove all the water and it starts to accumulate. I’m not suggesting that you do NxStage, I’m just saying that for me Nxstage really help me remove a lot of water. I now can remove water five times a week instead of three times. Also, I felt a lot better and wanted to sue the center but I’ve already left to do NxStage. Anyhoo, I very happy that it was just water and you are doing well. :clap;
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So happy you are feeling better. We know our bodies and we have to speak up.
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:bandance; :2thumbsup;
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I am so glad your feeling better :cuddle; :grouphug; :grouphug;
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holy crap i slept throughout the entire night! i havent done that in soooo long! (without medicine assistance that is!)
I cant believe how well im breathing, sleeping, feeling!
Im planning on taking full advantage of feeling so nice very soon! I am going to go to the ymca and hopefully get set up with them. Im still a bit weak, and the weather is not so kind to the RA but other than that, im feeling FANTASTIC compaired to the last year!
Thank you all for the kind thoughts and prayers! <3
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I am sooo glad you went to the ER and that you are alright and feeling better!! It is important to listen to our bodies, especially if you had the same problem before of gaining fluid not in the usual/visible places. A few months back I went from always seeing flud gain in my ankles, to ending up in the hospital because of fluid overdose that never showed up where it usually did.... so I didn't realize I had it until it was becoming a problem.
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Oh glm, I was so happy to see your posts! Glad they were able to figure it out, and that you are feeling so much better. Follow through with your plan to join the Y. Some mild activity will actually help the RA, and you'll feel a wonderful sense of accomplishment each time you go. My Y has a program called Joints In Motion that's done in a therapy pool 4 ft deep with 95* water. It focuses on range of motion, balance and core strengthening. Very gentle and the warm water is heavenly! I told them if it hurt I wouldn't stay with it and so far I've been able to increase my activity level gradually and comfortably. I hope it works as well for you.
Anyway, welcome back! Now you can start to really enjoy your new married life! ;D
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:bandance; :cheer:
Welcome back to 'normal'
Love, Cas
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I went through a similar episode a few months ago. My problem was constipation. Once I had an enema, and cleaned out my stomach with lactulose (diarrhea) therapy, I felt fine. For me, I was full of fluid, and had a hard time breathing, and it felt like my stomach was going to burst. Tonight, I dosed away at my chair, and woke up in a panic. My hearing was gone. Once I drained (I do home machine dialysis), I was back to normal, but it was scary. You don't realize how much you enjoy sound until its gone.
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glad to hear you`re doing better. i`ve only been doing this for 6 months and i`m starting to think the nature of these places is for the staff not really fr us, the patients.
good luck!!
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I had a similar issue awhile back.
The issue was a balance between fluid removal and BP medicine. I couldn't take fluid off because BP during treatment was dropping too low. Trying to force it off wasn't working and I felt awful. I too ended up in the ER for breathing issues and that was a mess. They thought it was cardiac issue even though I kept telling them it was fluid overload. It was 6 hours before they agreed to let a nephrologists see me. She agreed it was fluid overload and convinced them to dialyze me. It took another 5 hours till they got that set up. Afterwards I felt better but but had to argue to let them release me. Grr.
Long story short, I got a new nephrologist and she is wonderful. New center and new nurse too. All are awesome. The nephrologist, nurse and I work together to plan my treatment.
We ended up lowering my BP medicine to allow me to get more fluid off. Less fluid meant lower BP and feeling a whole lot better. Ultimately my DW is 5k less than before and I am off 2 meds, down to only one.
So very glad you're back and feeling better. Hopefully with new Dr's you can come up with a regime that works for you.
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Jesus ... i feel sorry for you. i know exactly how you feel ... ive had it for 10 years. It got so bad for me i felt i could no longer face "those people" .... i moved to a different dialysis unit .... problem is the next dialysis unit also has some of "those people".
The only way to dodge it all is to do your home training and get set up at home so you can dialise at home and be in control of your own treatment .... with no nasty/irrelevant/incorrect/offensive comments flying at you.
I wish you all the best gothiclovemonkey!! stay strong, don't talk to the people who are bad ... just those who are good.
I have moved round 6 dialysis units in 10 years due to "those people" making me feel too uncomfortable to stay there.
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my husband and i start home hemo training in july. i absolutely cannot wait!
Yesterday was hell. They had trouble sticking me, after 4 sticks in the new graft, they went to the old fistula. at that point i was already pretty emotional (partly because there has been a screw up over my meds and i havent had my antidepressant in nearly a week...) then I get a horrible cramp.
Let me rewind a lil bit... a few weeks ago, the dr was in, and we agreed that I could get my blood back to stand, if my cramps get too bad (i cramp, and it isnt dialysis related sometimes, so giving fluids does nothing... only walking them out helps, and my center doesnt allow anyone to stand while on the machine) Apparently NO ONE got the memo, and they didnt believe me, and argued with me while im in pain- i wont deny that i can get fairly upset when im being accused of lying, so they finally call the manager, who informed them that I am telling the truth, finally giving blood back so i can walk around.... at that point i am in a panic attack and cant stop crying (again, mostly probably due to the lack of meds... but i was upset) So i opted to just say screw it and sign ama and go home. I have been told I am disruptive to others when i cramp, because i start crying (it frickin hurts! i cant help that!!!) and id rather not disrupt everyone. Of course this means i have more fluid than i should, so i have to be super careful. boo
I know I am young, but i am NOT a liar, so it really irks me that they question me like that. Especially when im in pain... and i can tell them til im blue in the face that the cramping isnt from the fluid remova, they STILL try to pump me full of fluids when i cramp and shut UF off... THen when im still cramping after that, they continually say, "You shouldnt be hurting, we shut ur UF off and gave you fluid." *rolls eyes* I feel like screaming at them with some choice words. Ive been back here since OCT and still have this issue. Of course, the last time i talked to the doc he acctually laughed at me. When I told him AGAIN that these cramps just wont stop til i get up and walk them out, and i really really do not think they have anything to do with D, he laughed at me. Thankfully he and the manager did agree to allowing me one "get off" per treatment, if needed, but ask that I try very hard not to. WHich i havent since we talked about it nearly a month ago. DEAL! Ive cramped but managed to stay calm through the rest of the treatment (typically happens when i am about to come off anyway, so i just wait it out if its not too bad) I just cant seem to sit for that long without cramping. Happens at home too (even since before i started D 7 years ago, part of the reason im pretty sure it isnt D causing them)
The reason this time though, i believe has a lot to do with how hard i pushed myself this week to get some things done, so my body is angry lol Seems when I do more physically, i get more cramps and restlessness, i was only about half way thru my treatment when the cramp hit, and it wasnt a small one i could just ignore, it was a screaming-crying-omg-im-dying type of cramp. the kind that they would call me disruptive for...
I dont try to be loud and cry when it happens, but how can i help that?!? when I hurt I make noise, its soothing for me. I tend to do a low hum if its not horrible, but if its bad i get louder ( i guess inmy mind i think that helps? and it does keep me from screaming loudly lol)
On top of that, because i exerted myself this week, im in a ton of pain with my RA, im still not used to having it, i dont know what my limits are, but im fairly certain ive surpassed them days ago, and still have a big day today... i feel like my toes and fingers are broken into a thousand peices... but 'ya gotta do what ya gotta do' right?
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GLM, I believe you!! I reallly do!! I have a condition that causes pain/stiffness and get cramps all the time and I'm not even on dialysis! My husband is the one on dialysis and altho he doesn't normally cramp up during dialysis, he does get leg cramps at other times. He gets them in his calves and on the inside of his upper thighs. One thing his center taught him (when he was doing incenter) was to drink tonic water that has quinine in it. In fact, they keep it handy for patients who get cramps. We get the one made by Canada Dry. It tastes horrible but I have to admit, it works very very fast for cramps. Faster than water and even faster than walking the cramping off. If you haven't already, hopefully you can give it a try. Tastes nasty but not as bad if you chill it in the fridge. By the way, before I used the tonic water trick, I had to walk off cramps in my legs or "stomp" or "jiggle" my legs to work off the cramps. I'm sure it would look hillarious to people but gosh darn, I don't care, gotta do whatcha gotta do!
I absolutely hate to hear about people having pain and no one helping them with it. If walking off the cramps helps you, then that is what you need to do and they shouldn't argue. Of course, they are concerned about you getting a full dialysis treatment so that you don't end up keeping too much fluid onboard but hey, when a person is in agonizing pain and knows what helps, they should trust that we know our own bodies and let us deal with it in whatever ways we know works. I am so sorry you go thru all this with them over and over again. That reallly burns me up that you are dealing with a staff that doesn't listen to you because if they did, maybe they'd learn something that could help you and other patients too. Oh, believe me...been there, done that and I hate it when people don't listen, especially medical staff. We cannot all be lumped into one category, everybody is different and some more than others! By the way, I understand about your "humming" through the pain, they should empathize with you on the fact that YOU are just trying to work through the pain! Whatever breathing or techniques work for you to get through pain is what you should do and they should be empathizing with you on it. They should just be glad that you are trying to help yourself.
Good luck on your training for home hemo! It might be exactly what you need! That is what my husband and I do (I am his care partner). We use the NxStage System One Cycler and the Pureflow machine to make his batches of dialysate. I will be honest tho, it is a lot of work (setup, clean up, supplies inventory and maintaining an area of your home that will never again look or be quite normal and more like a medical clinic). BUT....the beauty of it is that you get to be with your family and can do it whatever time of day/nite you want to do it, just so long as you do it as often as the doctor tells you to and stick to the treatment plan. I'm the one who does the setup/cleanup and takes care of ordering supplies, etc for my husband. For me, especially since I'm 50 and have a form of arthritis and do all the regular household chores/cleaning, it is hard on me. So, I have to pace myself and go slow and start setting things up early every day. Some days I hate it, sucks the life out of me and I feel burnt out but on the otherhand, at least I know that here at home he is getting looked after every single minute, I stay right by his side and I'm here to make him comfortable during his treatments with anything he needs...big soft oven mitt for a hand warmer, heated rice bags for his neck or arm or legs, remote for the TV or we listen to music and just talk and I also like that he's not having to be around the germs of dozens of other people at a center, etc...We are in the privacy of our own home (small apartment) and not having to rely or waiting to get the attention of a staff member to get help. What I've read from your posts tho, my concern would be how your son would handle having his mommy on a machine at home and...the risk that he may get curious and want to start touching buttons on the machine or touching things and possibly contaminating them or pulling or touching your blood lines during treatment, which could be dangerous to both you and him. Would it scare him? And what about your husband...would he have the time AND energy to help you setup/cleanup and be your care partner during treatment because in all honesty, if he's already tired, home hemo will tire him out even more. NOW, with that being said, I just wanted to be upfront and blunt...doing home hemo is not a walk in the park HOWEVER, depending on your abilities and willingness to commit to taking it on, home hemo will probably be healthier for you and you will end up feeling better and probably getting better labs AND...you will have a peace of mind just from the fact that you won't be dealing with uncaring medical staff anymore like you have been. The first several months are the hardest but...YOU will get to be in-charge of your own treatments! No more waiting for a tech or nurse to come help you, your care partner (hubby) will be there and ha, I suppose you could make demands and boss him around all you want during treatment (joke) "honey get me this, honey get me that" haha... So it might definitely be worth a try and besides, if you don't like it or it doesn't work out, you can always go back to the center. Just be prepared that there is a lot to learn, a lot to do, it will be scary at first but you will never be alone because the NxStage company has a 24/7 number just for people to call if you have problems during treatment -they will actually walk you thru an alarm or problem while you are on the phone, they are some great people!
Long post, I know but...good luck! So sorry you have been put thru hedoubleL but I notice that you are a "go-getter" and being proactive in your own care and should be applauded! It's good to be fiesty but of course they say you catch more bees with honey...or however that saying goes. So sometimes we just have to suck it up and go with it. Hopefully tho doing home hemo will be worth it for you and the end of your nitemares with that staff!
Best of luck, PT
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The problem with that more bees with honey is, bees have stingers... i think ive given them 'honey' for too long, time to bring MY stinger. Typically I try not to bother them or anything if i can get away with it, but those cramps can be killer...
I am nervous about home hemo, ive done PD but i still imagine its going to be harder... i figure ill know as we are training, if we can do this or not.
ive heard about the quinine, havent tried it yet, is it safe for us?
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The quinine in the tonic water must be safe for dialysis patients because my husband learned about it at a center but of course, I don't want to be naiive and assume it's okay for everyone. I suppose like anything else we've got to ask the Nephrologist but my husband is a diabetic on dialysis and it hasn't affected him negatively. My concern would be if it's okay to take with any of the meds you are on...might want to ask your Neph for that reason. Whenever I have needed some, I only pour a small amount, not even a cup's worth, into a glass and drink it slowly (mostly because it tastes so nasty) but I'm also afraid it may make me barf. But...I've discovered that I only need a small amount anyway for it to get rid of my leg cramps, so that's good!
I imagine tonic water is used to mix alcoholic drinks. I don't know but when I was younger and could still drink, I sure as heck didn't use tonic water. That would have been too "uptown" for me and my pals. I guess the booze would kill the bad taste but I'm too tired nowadays to even think of having a drink (I know one drink would put me to sleep or make me barf) and my husband (having ESRD) certainly can't drink! Heck, just a glass of water is a "celebration" for him now! :beer1;
And yes, yes, YES! When you sting, remind them that you first tried "nice" and "nice" didn't work. Just don't get yourself kicked out. Hopefully home hemo will work out for you.
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Im very surprised they havn't tried treating your cramps with quinnine!!! .... idiots! Surelly it should of been tried by now in your case.
In the UK its one of the first medications they give dialysis patient who suffer from cramps.
Personally i only tend to suffer cramps when my base weight (dry weight) is a little low .... this dehydrating me somewhat during treatment.
I used to get lots of cramp all the time, this was before i started dialysis and early stages of dialysis ...... training in the gym was responsible. i was ok training untill i stated losing kidney function, then the cramps started. I had to stop training in the gym to stop my cramps :(
At the start of my haemodialysis there was so much trouble with nurses needling my fistula, they were doing so many failed attempts, making a right mess of my arm and making the whole experience rather horrific for me. i suffer anxiety and panic issues .... people hacking at my arm with massive needles and not getting anywhere was too much to deal with.
After 6 months of nurses causing me stress and discomfort i decided to take things into my own hands ...... i told the nurses i believe i could do better myself and i dont want them to needle me anymore. I started needling myself at this point ..... i have now needled myself 3 times a week for about 9 and a half years, in total i have only ever had around 6 or 7 failed attempts!!! ...... the nurses were having 6 or7 failed attempt over a couple of sessions when they were needling me.
Best advise i can give you for haemo is start needling yourself ..... even in hospital on the dialsysis unit. Let the nurses do everything as they do apart from needle you ... do that yourself.
Its scarey at first needling yourself but once you have done it .... your dialysis experience becomes easier, less stressfull, less painfull and more comfortable.
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That's shitty the way you are treated at your dialysis.. Something you need to remember is that at your dialysis the highest trained person is the nurse. Everyone else is just a regular person. Techs, dietician's, social workers, they don't know shit.
You know more about your body than anyone else there.. Don't be afraid to tell them to shut the hell up or to piss off. You have the final say on everything. And if your Doctor doesn't want to listen to you tell them to their face that they don't listen and you can easily replace them if they don't take you more seriously. All of those people are paid by your insurance company to render a service. If the service isn't up to your standards take your business elsewhere. It's your body and nothing happens unless you give the go ahead. and sometimes people refuse to listen so you have to get frank (shitty and in your face) to get your message across.
This just happen to me.. I was having a high potassium for a few weeks.. My doctor told the nurse to tell me to make an appointment to have a fistulagram. They said that I'm "probably" not getting good dialysis. Here's the thing. they only drew blood pre-dialysis.. I told the nurse to draw a pre and post too see if dialysis was working and I was just over doing it at home. Pre was 7.1 post was 3.4.. My Doctor got her ass reemed by me for being lazy and not thinking to do a pre and post, before suggesting that I go to the hospital to be cut.
You're the boss... take charge and let those people know that they work for you, and if they can't listen you don't need them.
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I would be careful coming on with too much attitude, when push comes to shove, staff and these dialysis companies can usually push back much harder. In a lot of these cases it might be best to find an advocate who can do your heavy lifting while you play the wonderful, compliant patient - a relative, a minister, or other. I was my daughter's advocate years ago when I became upset about reuse (http://www.dialysisethics2.org/forum/index.php?board=4.0), lack of use of crit-lines, no home dialysis option, and her short treatments. But I found I also needed someone to back me up - found that with Arlene Tinker and friends from Dialysis Advocates so many years ago. Larry Hall (http://dialysisadvocates.com/patient-stories/) is one person who I've talked to over the years, said after finding DA he was able to sit back and smile at staff who tried to bait him and get him to blow his top.
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my clinic has reuse (ew!) they get on me about my filter being so clotty....
im pretty fed up with everything right now, but still pushin on.
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Hello gothic,
I am very sorry for what you have to go through
and I do hope your dialysis-routines get better soon...
Best wishes from Kristina.
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Let me get this straight the morons that run your dialysis clinic think you have control over the clotting of your blood. Where did they hire these people from Ringling Brothers Clown College.
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You don't have to accept reuse! I provided some very reliable sources concerning reuse (see below), but if you have more questions about this or things such as clotting filters and cramps, feel free to contact Dialysis_Advocates (http://dialysisadvocates.com/)! After more than a decade of doing this, DA is knowledgeable and has been the only help so many patients (http://dialysisadvocates.com/patient-stories/) have found.
Reuse, parts A and B
http://www.dialysisethics2.org/forum/index.php?board=4.0
Problems DA can help with (and links to contacting):
http://dialysisadvocates.com/assistance/
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they claim that when its all clotty it means ive eatten bad foods, like fast food or something... (and yes occasionally i am guilty of that lol)
this clinic isnt exactly.... a good one. i actually had started d here, and ended up quitting, iy totally gave up, thinking i cant live if its like this forever, no way. ended up in a hosptial and the clinic who did it there was sooo much better, so i moved lol but i ended up back at this crap hole last year. new building mostly new staff and its still a crap hole. maybe even worse.... ya know what they say, you can polish a turd, its still a turd.
thanks you for the info plugger
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The more I read about your clinic the more moronic they seem. I googled fast food effect on clotting and found nothing. I think when Bozo retired from his TV show he must have gotten a job at your dialysis clinic. If you are clotting your filter tell them to not reuse your filter. They have more control with the Heparin then you have with a fast food lunch. If your blood work is ok ignore the morons oh wait to call your center staff morons would be a insult to morons around the world. I just asked the nurse here at my clinic and she said if you over indulged whit thing like spinach but that isn't a fast food.
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they claim that when its all clotty it means ive eatten bad foods, like fast food or something... (and yes occasionally i am guilty of that lol)
this clinic isnt exactly.... a good one. i actually had started d here, and ended up quitting, iy totally gave up, thinking i cant live if its like this forever, no way. ended up in a hosptial and the clinic who did it there was sooo much better, so i moved lol but i ended up back at this crap hole last year. new building mostly new staff and its still a crap hole. maybe even worse.... ya know what they say, you can polish a turd, its still a turd.
thanks you for the info plugger
I thought you were going to do dialysis at home??? You really need to. It is a far better world and you have control.
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On the way out of my clinic this morning I stopped and asked the dietician, head nurse and doctor about fast foods causing clotting. Basically tey all laughed and said it was the dumbest thing they had heard in a long while. I would check with my doctor about any thing these people tell you, they seem to be living in a othe world.
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I would check with my doctor about any thing these people tell you, they seem to be living in a othe world.
Also maybe ask them nicely for some pamphlet on the subject so you can educate yourself on what fast food to avoid ;-) This would be especially helpful if your nephrologist is spouting that type of information.
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Reguarding home dialysis they told me id start train in July, then i had issues with the fistula and they wouldnt train me while i had the cath, but thats was taken out like really fast, i asked again they said someone was training, i asked last week and they said oh theres still two people ahead of you. (i think they forgot and just put me after the people who asked after me...)
ive been to three other clinics, and all three were much much better than this hole!!!! i dont get it. how they can be soooooo much worse.
i kid you not, i have to tell them every single time tat id prefer ONE peice of tape per needle removed, and every single time they try to put more, which i understnad most people want more, but some of them argue with me and refuse to only use one strip....
i have to constantly try to explain, mid cramp, that this cramp is most likely not dialysis related, but they stop my UF and give me fluid anyway...
when all that crap went down last year, we had a meeting, the neph, myself and the manager.... we agreed on two things, one that if i cramp they would give my blood back and let me stand. (they dont) and that id meet with doc off the machine rather than while im on it, that happened ONE TIME.
i do truly believe that if i die, its going to be because of them. i dont trust anyone there at all. they actually ignore me now days, seems most treatments are poor... either cramps or bp dropping low, so i call out for them, they just completely ignore me. no words, no acknowledgement at all!!! they say "we dont know what to do for you" often times asking if i want to come off, because im being sooo disruptive to others. (thanks, make me feel worse about an already crappy situation, guys)
i have another issue going on right now where my body is moving uncontrollably, some days they dont want to stick me, fear ill infultrate, but then they get bitchy with me when i have the same concern. that makes sense.
they are also very condesending. ive been on d for over 7 years, and when my labs arent great, they act like im brand new to this. I know the consequenses of eating stuff i shouldnt. they just get angry because they actually tell us when labs will be so they look good on paper. none of the other clinics ever did that. My issue with this is, when i try to be good with what i eat, and drink, i tend to do a really horrible job, if i dont try i do well... i have no idea why this is, but it is. its always been this way. if i try not to drink much, i end up with a ton of fluid on. it makes no sense, but i think its because im thinking about it, makes me want it more, or something like that?
its so frustrating. idk how long it takes to train for home hemo, but im assuming at least a month or longer, so i hope that by spring ill be training.
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oh and as far as the fast food, yea occasionally we do, but typically i do cook at home.... now occasionally that includes convience meals, simply because they are super cheap and easy to fix and quick. as im sure most of us do, have a limited budget.
if i had my way, id eat mostly salads and raw veggies. thats my favorite foods. i have food issu es, textures are my enemy. a lot of meats gross me out. i eat them, and sometimes i love the way they taste, but almost always i will be enjopying some form of meat, and the texture will change, there will be a peice of grissle or a vein and then i cant finish. i know im weird.
im a weird fat person, i dont care for sweets at all (except the one kind we arent supposed to have, chocolate on occation, melty creamy goodness) and idk if anyone has noticed our diet is mostly meat and sweets. the two least favorite ugh
and most of the veggies and fruits i love are no-nos. so i find it hilarious that they are constantly assuming i eat out so much.
One time id mentioned how i could easily become addicted to some thai food, because we had went to a place that just opened up. so like, a few days later the dietician came out saying something about i need to stop eating that because its very bad for me. i should limit it to once in a while, like maybe once a month... i said um ive only had it one time. she said, oh they told me you were eating it a lot, and you were addicted to it.
(not the first time they have made assuptions and put words in my mouth.... they are like highschool b******. its rather distrubing.)
sometimes i feel like my son is more mature.... and thats really saying something
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thanks you for the info plugger
You're welcome! Worries me they are starting to ignore you.
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Reguarding home dialysis they told me id start train in July, then i had issues with the fistula and they wouldnt train me while i had the cath, but thats was taken out like really fast, i asked again they said someone was training, i asked last week and they said oh theres still two people ahead of you. (i think they forgot and just put me after the people who asked after me...)
ive been to three other clinics, and all three were much much better than this hole!!!! i dont get it. how they can be soooooo much worse.
i kid you not, i have to tell them every single time tat id prefer ONE peice of tape per needle removed, and every single time they try to put more, which i understnad most people want more, but some of them argue with me and refuse to only use one strip....
i have to constantly try to explain, mid cramp, that this cramp is most likely not dialysis related, but they stop my UF and give me fluid anyway...
when all that crap went down last year, we had a meeting, the neph, myself and the manager.... we agreed on two things, one that if i cramp they would give my blood back and let me stand. (they dont) and that id meet with doc off the machine rather than while im on it, that happened ONE TIME.
i do truly believe that if i die, its going to be because of them. i dont trust anyone there at all. they actually ignore me now days, seems most treatments are poor... either cramps or bp dropping low, so i call out for them, they just completely ignore me. no words, no acknowledgement at all!!! they say "we dont know what to do for you" often times asking if i want to come off, because im being sooo disruptive to others. (thanks, make me feel worse about an already crappy situation, guys)
i have another issue going on right now where my body is moving uncontrollably, some days they dont want to stick me, fear ill infultrate, but then they get bitchy with me when i have the same concern. that makes sense.
they are also very condesending. ive been on d for over 7 years, and when my labs arent great, they act like im brand new to this. I know the consequenses of eating stuff i shouldnt. they just get angry because they actually tell us when labs will be so they look good on paper. none of the other clinics ever did that. My issue with this is, when i try to be good with what i eat, and drink, i tend to do a really horrible job, if i dont try i do well... i have no idea why this is, but it is. its always been this way. if i try not to drink much, i end up with a ton of fluid on. it makes no sense, but i think its because im thinking about it, makes me want it more, or something like that?
its so frustrating. idk how long it takes to train for home hemo, but im assuming at least a month or longer, so i hope that by spring ill be training.
Thts B. S. about the catheter. We started home hemo for 5 months with a catheter. Many people do it at home with a catheter. Those people are idiots!
You will feel SO much better at home as it is gentler easier diaslyisis and YOU have control of it.
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Hi Gothic, have you started needling yourself? If not, start doing little things like preparing your needles and stuff.
Stay string girl, love, Cas
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i have not, and scare to do so haha my husband said hed be my needle poker
its at such an odd place i dont even know that i can. its nearly the back of my arm! and my hands arent being too kind right now, i cant grasp things to save my life.
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Sorry they are putting you thru so much h-e-double heck! Wish you had an advocate that could actually be with you during your treatments so they could see for themselves what is going on. As for cramping, I drink the kind of tonic water with quinine in it. We get the cheapest we can find at the grocery store. I'm not on dialysis (my husband is and we do home-hemo) but when he was in-center, they would give him tonic water for cramping. Well, I tend to get awful leg cramps at night in my calves and the backs of my upper thighs (if I didn't drink enough water during the day). The only thing that use to help them was getting up out of bed and shaking my legs out or even smacking them (they get THAT bad). But, the tonic water works SUPER FAST, in under a minute. It tastes awful but I don't care anymore, it's worth the bad taste to get rid of leg cramps. If it's okay with your neph, maybe you could carry some with you and next time you cramp and they take you off, you could drink some down to get rid of the cramps faster. In either case, sure hope they start treating you like an individual instead of putting you and everyone else there into one box. If they need to spend a little more time dealing with your unique issues, then that is what they need to do! Lawdy!
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Hey goth girl! Hope you are feeling a little bit better today! I really feel for you and all the crap you have been going through. Wish I had a magic wand to make the bad stuff to go away - but I lost that wand.:) Dang it!
I am keeping you in my prayers. Hugs to you my dear! :cuddle; YOU ARE A FIGHTER GIRL!!!
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:grouphug; :flower;
Love, Cas
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Hey GLM,
I'm sort of new here but have been catching up on some of the threads. You and I are around the same age and seem to have experienced some similar problems. I was laughing about the part where the nurse told you to stop eating Thai food. Did she tell you to eat white bread slathered with Splenda and 'whipped topping' instead? Maybe with a side of 'gelatinous dessert'? As long as you don't eat Thai dishes that have very much coconut in them (like panang curry or tom kai soup..also avoid massaman if potassium is an issue as it has lots of potatoes), it's a fairly healthy type of cuisine overall to treat yourself to. Spicy chiles are good for ya. Keeps parasites away. Rice is low in phosphorus and most Thai dishes are served over rice or with a side. You can usually get a dish with whatever your meat preference and could always ask to leave out high potassium veggies. So, I'm not sure what that person was talking about or if they even had any concept. Gawd, I wish every dietician at the d-clinics were required to follow the dialysis diet for a month so they could even remotely empathize.
But seriously, you have to be really careful what you say around clinic staff. I have to remind myself that even though my treatment at home is in my hands, they still have control over the crux of it all. You could say one little thing they dislike and even if its meant completely as a joke, it can have an impact on your transplant status. Sometimes I find it hard to believe how many unintelligent people have been in control of my survival and it just reminds me to grit my teeth, bare it and try to think of it as a temporary annoyance. All you can do is rise above them...or file grievances until something happens. xD
PS- Have you started home hemo? Why did PD not work out for you, if you don't mind my asking?
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:rofl; picturing u locked away with mounds of watermelon going to town!
PD and my body didnt like each other... i guess my body rejects the plastic? got baaad infection both times (they said its likely the cath and my skin just did not want it there.... im like that with tape too, among other things)
nope, they keep telling me im next, but that was how long ago now???
they dont give two shits about me. which im about to express in another post. *not too happy* lol
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If your dialysis center is oppressive, you are in the wrong place.
I had a dialysis nurse who farted, how bad can your treatment be?
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well, the wont allow me to even train for home hemo, saying im not mentally stable... which is BS. The only say that because around the time I last posted on here, I wrote a note to the head nurse, saying that I really want to be a better dialysis patient, and I need help to figure out whats wrong with my body, so I can stay my full treatments, as a good patient would......... I ended with "Please, help me. I cant live like this." SOOoooo they took that as a suicidal letter..... (really?! i mean, i guess I can see how that last sentence does sound SOMEWHAT like that, but as a whole, asking for help to be better? how is that suicidal?!?)
Anywho, since then, its been a losing battle. And im so sick of my dr laughing at me when I make suggestions.
Gerald, I had a nurses nose run all over my arm when she was sticking me once.
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Rules for coping:
1. It's your body.
2. Never beg.
3. For policy questions see the doctor, not the nurse.
4. Gather all the information you can find on your condition to prepare yourself for the Doctor.
5. Be intelligent about it. No attempts at sympathy, it won't work.
6. Hang in there for you are a child of the universe and you have every right to be here.
7. If you cannot find compassion, find me.
8. Then you can wash the dishes and mow my lawn. Remember this, your entire body was originally built to be a hedonistic searcher. Consider your dialysis an intrusion.
9. Take my advice as a suggestion, I am not a doctor. I only pretend to be one.
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well, the wont allow me to even train for home hemo, saying im not mentally stable...
One patient I met at the local clinic is now a successful home hemo patient. He told he the neph at his previous clinic was excellent, however, she considered him "unsuitable" for home hemo and told him he could transfer to a clinic that would allow that, assuming he could find one. He did. Vanessa Evans (a NxStage hired evangalist) states that the biggest requirement for home hemo is "the want". You seem to meet that requirement, so start looking.
You might see if your MD will let you train for self canulation, and re-evaluate your suitability once you have mastered this skill.
One needs to be able master self canulation, and understand a few basic things to be successful at home hemo. I don't think "mental stability" is on the checklist of requirements :rofl; You could contact some other clinics and set up an interview with the home care RN (not sure an MD would spend time with you without a billable visit).
I told the people at my clinic I am planning on discontinuing dialysis, and they seemed somewhat concerned until I told them "at age 85, if I make it that far".
This worry about D patients becoming suicidal is ridiculous, since we all have the option of discontinuing, and no one can legally stop us. At that point, the MD's job becomes assisting the patient with a peaceful death within the limits of state law, not trying to stop a suicide.
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This suicidal excuse is bs. If they truly thought you were suicidal they would be required to notify your doctor and he would have to refer you for a psych consult. So they are either full of it, or completely incompetent. As SimonDog has pointed out every dialysis patient can just stop treatment, so for some reason these quacks don't want you to do home hemo. Go elsewhere.
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I agree. I have read your posts and do not think you are mentally unstable. If the social worker thought you were suicidal, he/she definitely did not respond correctly. You should meet one on one with the patient and evaluate suicide risk. Some clinics will say that patients are not eligible for home hemo due to noncompliance with in center hemo, but I don't agree with that. If the patient is noncompliant, the center should look for alternative treatment options to help the patient become more compliant. GLM, I am so sorry you are going through this!
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Some clinics will say that patients are not eligible for home hemo due to noncompliance with in center hemo, but I don't agree with that. If the patient is noncompliant, the center should look for alternative treatment options to help the patient become more compliant.
My home care RN told me one of her compliant home care patients was a non-compliant in-center patient.
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Exactly, Simon Dog! I have a fairly new patient who was not compliant with peritoneal dialysis and great with in center hemo. It depends on the patient and it is the dialysis facility's job to get the patient the best treatment possible. If the patient is noncompliant or unhappy, a different mode of dialysis needs to be tried.
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well the problem now is i dont have anyone who can be my partner. they wont allow me to do it alone...
but at the time, i did have someone...
im looking into finding someone, when i do, then ill absoultely revisit the idea!
I may be crazy but im not suicidal. if i was, why the hell would i go to dialysis?! lol
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There are some places that do not require a partner, in Saratoga Springs there is a place that does not. This is on the edge of the Adirondacks and some patients I have met travel 90 miles each way for in center treatment. The center in Saratoga Springs requires a Internet connection so you can be remotely monitored and I think the local rescue squad needs to be able to access your abode in case the center detects a emergency.
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unfortunately, here, they require it, or you cant do it.
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The center in Saratoga Springs requires a Internet connection so you can be remotely monitored and I think the local rescue squad needs to be able to access your abode in case the center detects a emergency.
I think NY State requires remote monitoring as a condition for home dialysis, which forces the home support teams to offer the structure that will support solo. I did hear talk of on patient who listed his dog as a care partner.
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It's a upstate New York problem. I have a house in the Adirondacks and the nearest dialysis center is about 30 miles each way. And I am a close patient one of the people I met comes 90 miles each way. Because of the distance and cost, a patient requiring transport is over a thousand dollars for each treatment. I understand that besides remote monitoring the local rescue squad needs access to your home, if anything goes wrong the center shuts the machine down and dispatches the rescue squad to go to your home, it seems to work ok. I plan to move up to the dacks come spring and what scares me is a 30 mile trip in a blizzard.
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Lucky, you don't get to choose.
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Lucky, you don't get to choose.
Pity I don't get to choose. Why let people who can't even follow a diet care for themselves. They will make a p*ck out of it. Then it'll be everybody's fault but their own
Obesity is much more complicated than just "not following a diet" or "lack of self discipline".
A really big man in dialsyis (probably the biggest in my clinic - 160kg) transitioned to home and from what I hear, he is doing well. He has the assistance of an RN wife to make sure the procedures are followed. And this is an individual who is so large he is delivered to his monthly neph appointment by ambulance on a stretcher.
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Just out of curiosity why shouldn't fat people. Be allowed to do home dialysis. For the record many do very successfully. Life is tough enough without judgemental people trying to decide rules for every one.
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Some people can rise to the occasion. Home Hemo training included doing treatments while an RN is watching, then a treatment or two at home with the RN watching as well. It is possible to flunk home hemo training, but it's not exactly brain surgery. I've met some fat surgeons, and they are successfully responsible for other people's health. Fat does not mean stupid.
And, not all pog's (people of girth) are that way because of diet. Metabolism differences can make it impossible for some people to lose it - a fact easily lost on those who deal with minor mass problems that respond to diet. That's why there is an entire industry centered around bariatric surgery.
Remember, there are risks and benefits to home or in-center. The fact that home patients tend to live longer happier lives tends to get lost in the discussion. I've gone from my MD having a talk about that phos level than starts with a 7 to having my binders discontinued because of home hemo.
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i am no longer married. my ex husband moved in feb... havent seen him since. he lives in another state lol
also, I am obese. I've lost 100 lbs without help. im still losing. i follow the diet, for the most part, otherwise id be a heck of lot thinner. id be happy eating nothing but raw veggies, if i could lol I may be fat as all get out, but considering, i am relatively active. I go to the ymca for water aerobics 3 days a week, for 2 hours. and sometimes more than once a day, if i can find the time. (and looking into buying a treadmill so I can walk while i relax at home)
Not all obese folk are unheathy and cant follow a diet. I got fat that way, sure, i ate a TON of food in one sitting, i used food as a coping mechinism (now i chew gum a lot lol) and i never really did anything exercise-wise. not a good combo, but NOW, i am doing the right things, yet im still rather huge... does that make me any less worthy of the choice? i get my fat ass up and go to treatment, even when that place is horrible. i KNOW id do much better on home d.
Just because someone looks glutonus doesnt mean they are. they may be trying to better themselves. if i didnt have the RA issues, i think id probably be much smaller by now, but it does hold me back a little, unforteunately.
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The reason must people come hear is to express the fears and concerns the kidney problems they face, who belongs on home hemorrhage is a matter best left to the people who are responsible for the training and vetting patients, some ones weight or current problems is a matter for the team at the center that is providing evaluation and training. It isn't helpful to pick your favorite problems and decide that some one should not get a treatment. That type of pronouncement discourages people from asking for help and support. Personally prior to dialysis I was about 160 kilos sine then I am down to 130 kilos and hope to continue. I am absolutely compliant , blood work always perfect, never missed a treatment, never even been late and never put on more then the allowed fluid. But your opinion is I would be a poor candidate based on your personal bias of people with weight. Some how I don't think the evaluators at my center agree with you. Since I have been offered home hemorrhage several times.
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In my center we had a individual who constantly consumed too much fluid and his lab work was all over the map. He successfully transitioned to home hero and because he does dialysis more often, 5 or 6 days a week in the evening he has no problem with fluids, and his lab work is always ok, some people do better on home hemp, some don't. It's impossible to decide who will be good on home hemp and the results are always surprising . Nitpicking some ones problems does not provide support for the person it just adds to the load they are already carrying. Professionals are the ones who need to provide the yea or nay on home hem not interested by standees. My feeling is everyone who wants to do home hemo should be in outraged to try, not to be put down. If she's selected and passes training the results could make her life easier. I am glad you have a weeks holiday, I am retired and my whole life is now a holiday.
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I'm 122kg Michael. I don't think hemorrhaging at home would be a good idea, the blood loss would likely kill you.
Also I was not referring to you, gothicmonkey has started in many posts she can't eat healthy as it's too expensive, which is bullshit and laziness for not prepping her own food, she talks about enjoying takeaways which basically are a no-no for us patients who care about our health. Also she's up 8kg or so between treatments and talked about sometimes missing sessions, disrupts other patiensts (her words) and has panic attacks on dialysis so you really cannot compare your situation to hers, but if you have nothing to do but argue with me then that's fine I'm on a weeks holidays from work and have plenty of time.
I think that you have misunderstood me. which happens often, i notice.... I actually DO eat healthy. I prefer raw produce over pretty well any other thing there is to eat. But thats not exactly "dialysis healthy" I dont really care for most meats, chicken is my go to, grilled. Also, make most things from scratch. It really IS too expensive, I was bitching about it because i think its ridiculous how expensive most things can be. Especially produce, and meats...
Yes, I do treat myself to take out ONCE a month, IF my labs are good. A sort of reward for doing well.
IN THE PAST I was non-compliant. ive been on dialysis 8.5 years, the first two years I WAS a horrible patient, but since then I have been good. I dont miss sessions...and if for some reason i have some reason i cant make a treatment, i reschedule for the following day. sometimes they make me come off the machine because they say i am disrupting patients, because when i get the full body cramps, I tend to be rather vocal and cry because it is very painful. They arent dialysis cramps, as it also happens at home. they have yet to find why this happens.
Also, ive never stated ive had 8k on between treatments. typically its 1-3k over what they have my DW set as....the only time ive ever had that much on was because THE CLINIC refuses to listen to me. When I come in with 1k on because I am actively losing weight, they refuse to change my dry weight, When I cramp they want to pump me full of fluid, even though Ive told them several times that does not help these cramps.
Sorry you seem to have misunderstood me. The reason I want to do home hemo is because this clinic is a peice of crap.
Two years ago, from october to dec, I told them repeatedly that I had more fluid on than they are taking off. They didnt believe me, told me i was crazy, it was panic attacks IT WASNT and I spent 2 weeks in the hospital in dec because I WAS RIGHT they took off over 20 lbs of fluid TWENTY lbs lower than what they had my dw as!!!
And now, two years later, the same damn thing is happening and again they arent trusting me that I know my own body and can feel the fluid.
Edited: Fixed quote tag error-kitkatz,Admin
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i am no longer married. my ex husband moved in feb... havent seen him since. he lives in another state lol
also, I am obese. I've lost 100 lbs without help. im still losing. i follow the diet, for the most part, otherwise id be a heck of lot thinner. id be happy eating nothing but raw veggies, if i could lol I may be fat as all get out, but considering, i am relatively active. I go to the ymca for water aerobics 3 days a week, for 2 hours. and sometimes more than once a day, if i can find the time. (and looking into buying a treadmill so I can walk while i relax at home)
Not all obese folk are unheathy and cant follow a diet. I got fat that way, sure, i ate a TON of food in one sitting, i used food as a coping mechinism (now i chew gum a lot lol) and i never really did anything exercise-wise. not a good combo, but NOW, i am doing the right things, yet im still rather huge... does that make me any less worthy of the choice? i get my fat ass up and go to treatment, even when that place is horrible. i KNOW id do much better on home d.
Just because someone looks glutonus doesnt mean they are. they may be trying to better themselves. if i didnt have the RA issues, i think id probably be much smaller by now, but it does hold me back a little, unforteunately.[/color]
I'm impressed with how physically active you are and your attitude but also by the fact that you are an active participant in your own health care. You obviously have willpower and that's bonus! Personally, I think we'd all prefer to be healthy AND slim but I remember reading once that the important thing is that a person is physically able to do the things they want/need to do despite their size. Staying as mobile as you can, up on your feet and moving around I think helps the body AND the mind. You seem to be doing good, hope it continues to get better for you and that easier days lay ahead. Lord knows, we all deserve easier days!
I meant to add that I have Fibromyalgia and recently went back to being on an anti-depressant (serotonin). I not only need it to help with depression but for PAIN (and who wouldn't be depressed when they are living with chronic pain?). The more pain I have, the less I feel up to being active and the less active I am, the worse it is on my body and the more depression I feel. It's a vicious cycle and lately I've really taken a slide. So...back on meds and already I am wanting/starting to do more. Hang in there, attitude is everything, willpower is a lifesaver and you've got willpower!
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GCM the only one who should decide if you are a canadate for home hemo is the professionals who are responsible for the selectoon and training, one thing here is people's opinions often color their comments filter the negative remarks and keep on trying to reach your goals, ESRD is hard enough if you trust yourself. I have read your posts and you seem a resonable and sane young lady. I will say I think you may have hit a unlucky streak but things like your husband leaving say more about him the you. Have faith in your self and keep up trying to reach your goals. I have faith that you will end up where you want to be.
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Please watch the personal attacks. I have given warning to a few members about this before. I have also been contacted about swearing in posts. This has been addressed through PMs.
Please read our rules once again.
Play nicely on this forum.
If anyone is confused about the rules please feel free to contact me.
Thank you all for your support of other members.
kitkatz-Admin
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it has been a tough year,but honestly, things are starting to look up... i wish my doctors would take me seriously, otherwise life is actually sooo much better these days. Not to speak ill of my ex, but he wasnt exactly a helpful person, i felt like i was raising two boys. its nice to have money for a change, since mine was the only income for out entire marriage. when he left, he told me the entire relationship was faked, he never loved me. it was out of left field, i had no idea. I asked him why he seemed off that night, and he said some very hurtful things, including he has never been attracted to me, due to my medical stuff. (I would have rather heard him say, due to my size, because thats soething i can actually fix.)
SO, for the week that was happening, i did have a small breakdown. but most people didnt even notice, it was that small. Anyway, yes at that time, i probably shouldnt have started training, but to completely say no... thats what bothered me. Plus, im sure having that on my record will go against any hope i may have for being listen in the future....
as far as being active... I have rhuematoid arthritis that they arent treating at the moment (due to other health issues, its 'too dangerous') so i have these giant lumps forming all over my hands and feet. very painful. Thats why I only do the water classes at this time, instead of some land classes too. I can handle the treadmill. It would be better if I could afford the special shoes they want me to buy, but insurance doesnt cover them, and they are $597.00 lol
i have that "move it or lose it" attitude right now. I know that without treatment this RA business will only get worse, so I am doing what I can while I can!
UNfortunately, winter is really rough, i usually end up with a walker... hoping for a mild winter!!!!
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It's good you seem to be doing better, please remember that people who judge other people with out being in there shoes should be ignored. That being said ESRD is not for the faint of heart and try to give yourself some slack, your ex was and is a moron don't let his bile bring you down. Living well is the best revenge. Since I have been reading your posts you seem to be doing better. But still remember to treat yourself well. A walker is not the end of the world use it if you need it a broken nose would be worse. Finally it's a El Niño year and weather geeks are calling for a mild winter north of the mason Dixon line and snowy down south.
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Keep up the 'good' work honey. I'm sorry your suffering with your RA again, but like you say, keep moving.
Sending you lots of positive, and healing vibes, love, luck and hugs, Cas
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thank you guys
All we can do is keep moving, keep trying.
i really do love that water class. Its called Gentle Joints, geared to folks with arthritis and pain and such, so it really works the joints, but... gently. (water walking, while doing hand exercises, water weights) the second class is a higher intesity workout, gears to get your heart rate up. (water running, 'jumping rope', jumping jacks, its awesome and i really enjoy it, even on my bad days, while im in the water, if feels ... oook until i get out. and i love swimming. they have multiple times during the day one can go just to do laps. or water exercises. i take advantage of that when i can. I hate missing classes, I only miss if I have drs appointments. (this monday i have 2 in a town about an hour away, so ill miss :thumbdown; darn drs )
and i really really want to get a treadmill for my house, that way, i can walk on it without shoes! shoes kill my feet lumps. and the YMCA doesnt allow you to be shoeless..
I also just started going to a group, that specializes in helping folks cope with things better. Its called DBT - dialectical behavior modification. I tend to hold it all in, then explode over something piddly. and ive been known, in the past to do some very stupid things when i finally do explode. (part of the reason it drives me nuts when people say that im not "psychologically sound" because at one time -most of my teen and young adult life, i wasnt psychologically sound and had a horrible addiction to self injury since i was 11... and Ive worked very hard to get better. without medication!!! -- nothing seems to work on me. if anything, it did the opposite and made me worse...Ive had one relapse in 8 years. and dont intend on having another, ever! ) so im pretty excited to be doing this. ive been wanting to for about a year now, but it was always during dialysis.
It really sucks when people can only remember how you were in the past. Ill always have a crazy label. it can be difficult when you put so much work in to bettering yourself and you dont really have any one to back you up, or encourage you... So I really do appreciate you all so much!
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They make moldable shoe inserts for a fraction of the cost of custom orthotics. I looked online for heat moldable shoe inserts and found a bunch under 30 dollars.
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very nice!! THANK YOU!
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Absolutely UNACCEPTABLE.
Write a complaint letter and give it to your coordinator, with a cc to the headquarters of the Company that runs that center,and your state Board of Health. You should absolutely not be treated that way. Even if it WAS a panic attack, that can kill you! That should be taken VERY SERIOUSLY. I know an hour round trip to another center is terrible, but you really should look into it. Also, check and see if any other centers have opened up nearer to you recently. Centers are opening up all the time--they are profitable! If not, maybe really seriously consider Home Hemo. I do it with a NxStage machine, and although its a lot of paperwork and medical equipment, it is not hard at all, once you get the hang of it. Since its more frequent dialysis (6 days instead of 3) it might help alot with the swelling and the nausea.
But send those letters! People shape up REAL QUICK when they realize you ain't playin'! :boxing; :boxing; :boxing;
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thank you guys
All we can do is keep moving, keep trying.
i really do love that water class. Its called Gentle Joints, geared to folks with arthritis and pain and such, so it really works the joints, but... gently. (water walking, while doing hand exercises, water weights) the second class is a higher intesity workout, gears to get your heart rate up. (water running, 'jumping rope', jumping jacks, its awesome and i really enjoy it, even on my bad days, while im in the water, if feels ... oook until i get out. and i love swimming. they have multiple times during the day one can go just to do laps. or water exercises. i take advantage of that when i can. I hate missing classes, I only miss if I have drs appointments. (this monday i have 2 in a town about an hour away, so ill miss :thumbdown; darn drs )
and i really really want to get a treadmill for my house, that way, i can walk on it without shoes! shoes kill my feet lumps. and the YMCA doesnt allow you to be shoeless..
I also just started going to a group, that specializes in helping folks cope with things better. Its called DBT - dialectical behavior modification. I tend to hold it all in, then explode over something piddly. and ive been known, in the past to do some very stupid things when i finally do explode. (part of the reason it drives me nuts when people say that im not "psychologically sound" because at one time -most of my teen and young adult life, i wasnt psychologically sound and had a horrible addiction to self injury since i was 11... and Ive worked very hard to get better. without medication!!! -- nothing seems to work on me. if anything, it did the opposite and made me worse...Ive had one relapse in 8 years. and dont intend on having another, ever! ) so im pretty excited to be doing this. ive been wanting to for about a year now, but it was always during dialysis.
It really sucks when people can only remember how you were in the past. Ill always have a crazy label. it can be difficult when you put so much work in to bettering yourself and you dont really have any one to back you up, or encourage you... So I really do appreciate you all so much!
I have Fibromyalgia and Depression. How are you feeling with your water classes? Has it helped your pain, your mood, energy level or outlook on things or has it helped all these things or just one? What specifically do you like about it the most? Am curious because I sometimes think of joining a swim class too. Keep up the good work!
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I must apologize for not keeping current with your thread. I haven't for months and now see that I have missed an awful lot. Thus, I am Sorry.
He was a turd. Plain and simple. Initially he did think far better of you, but then He more or less wore out. And rather than admit his problems and deficiencies, he attempts to blame you. You haven't changed. You haven't hid anything. You've been upfront and open with him throughtout. He is afraid that he would seem weak so instead he goes on his rampage and starts laying all blame on you.
It hurts, alot. but once you understand how truely immature he is, and why he tries to lay it all on you, then you begin to understand how it is NOT your fault.
So much for that.
Your RA. I worked with an Old Man, Heavy Equipment shop. He kept a jar of UN-heated honey next to the coffee pot. Every morning he would put a tablespoon of honey in his coffee. 2 cups every morning, never fails. Told me about his RA. How he couldn't work, couldn't even wipe his butt, is would get so bad.
I don't remember how he found out about it. The only thing I do remember is it had to be UN-heated. Spun out of the comb. Heating kills all the natural enzymes.
Even if you are diabetic you can figure out how to substitute the honey in for something else.
Give it a couple of weeks.
I hope it makes as much improvement for you as it does for him.
Take Care,
Charlie B53
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Another treatment proven effective yet BANNED by the FDA. Cocaine.
I don't remember the medical facility or when. But... Double blind studies were done with twins with debilitating RA. Each were given identical appearing 'capsules'. One obviously a placebo, the other very small doses of cocaine. And by small it was so small is to have no noticeable effect as in getting high.
Over the period of the study the swelling and pain of those receiving the drug vastly improved, not just a reduction in swelling and pain but improved range of motion and function.
The study continued and reversed the groups,, those that WERE receiving now didn't and those that didn't now did.
Over the next period of time the symptoms switched. Returning to those that had remission now again suffered and those previously untreated now went into remission.
The FDA REFUSED to agree and allow the drug to continue to be used. Would NOT allow Dr's to prescribe. Claiming the possibility for abuse too great they refuse to reschedule cocaine in in way to allow treatment.
Simply rude, knowing there is a drug that can be used responsibly to allow so many people relief and quite possibly the ability to return to the working world, yet the FDA continues to refuse.
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I cant do home hemo, the dr put it in my file that i am "not psychologically sound" enough to do home hemo (he of course did that the day my husband left me...)
The water classes were helping very much, i cant wait to go back! ive had one thing after another lately preventing me from making it to class, but I am hoping to return this week! It really did help me feel a lot better!!! I would have to say the water itself, i feel better when im in the water, the weight is lifted so the pain is less. also its usually really warm, which feels great and i actually am a weirdo, considering im obese i actually love working out. always have. i feel better mentally too
i just wish my doc believed me. hes now accused me of being bulemic because i throw up an awful lot, not on purpose mind you, and ive asked him to help me figure out why... (um.. i am fat, dude, no.. and if i were, would i be asking for help?! ) and an alcoholic because my brain scan showed atrophy (i dont drink, i can seriously count the times ive drank on my hands) He can be such a jerk.
Im really just in a bad place with all this right now... too much going on medically. waaay to much
if i didnt have my boy to think about, id stop this stuff. he keeps me going.
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Ha...I know what it's like when people think they know everything about you and they don't even know or want to understand the truth. I've yet to figure out how to deal with these types. Hang in there. Hope you can get back to enjoying the water again soon. Of course you have to put your son first but be kind to yourself so that you have the strength to be there for him. ;)
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Definition (psychological terms) - Enabler
1. Tacit Enabler - Supports another's bad habits by staying silent.
2. Overt Enabler - Supports another's bad habits by providing assistance such as money, transportation, approval, etc...
A person who supports another person's bad or dangerous habits.
Enablers tend to fear calling others on their destructive habits because these "others" tend to be friends, family or others close to the enabler.
Thus, rather than risk losing the love, respect, friendship or contact with the person, the enabler chooses instead to play it safe and watch the other slowly destroy themselves or others through their own actions.
Enabler (psychology) - one who enables another to persist in self-destructive behavior (as substance abuse) by providing excuses or by making it possible to avoid the consequences of such behavior.
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Definition (psychological terms) - Enabler
1. Tacit Enabler - Supports another's bad habits by staying silent.
2. Overt Enabler - Supports another's bad habits by providing assistance such as money, transportation, approval, etc...
A person who supports another person's bad or dangerous habits.
Enablers tend to fear calling others on their destructive habits because these "others" tend to be friends, family or others close to the enabler.
Thus, rather than risk losing the love, respect, friendship or contact with the person, the enabler chooses instead to play it safe and watch the other slowly destroy themselves or others through their own actions.
Enabler (psychology) - one who enables another to persist in self-destructive behavior (as substance abuse) by providing excuses or by making it possible to avoid the consequences of such behavior.
I am sorry PatDowns,...Who are the enablers? Are you saying it's us? Gothiclovemonkey? The waterclasses???
I might be dense, but I am still very confused as to what you mean.
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Gothic--may I call you Gothic?
I think that Dr. has some sort of agenda regarding you. I don't like how any of this sounds. He sounds like a real jerk and now it sounds like it is putting you in jeopardy. Please send those letters. The ones going to the people at the clinic and the managing company are really just for formal notice. It's the one to your local Health Department that really matters. And if they don't respond, write a complaint to the governing state medical board that issued your Dr.s' licence. Just keep writing until somebody listens. Some may think this is overkill, or too much drama, but I'm telling you from experience, it works! Even if it just puts people on notice that they can't just keep ignoring your issues. Even that can help a great deal.
Take names and kick butts! :boxing; :boxing; :boxing;
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drawingdami spelled it out. Document, Document, document. Names, dates, places, etc..
IN WRITING, to the governing boards and Licensing agencies.
When a serious problem is brought to the attention to those at the top, it soon becomes a landslide buy the time it gets near the bottom.
The local Dr and clinic should have listened and handle it professionally instead of ignoring you.
They have jeapardized YOUR health and safety. Which by law is their responsibility to take care of.
Warm up that pen and get busy. Keep copies of every letter you write. Especially those to the locals as they will claim you never told them anything in attempt to cover up for their negligence.
Take Care,
Charlie B53
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I am sorry PatDowns,...Who are the enablers? Are you saying it's us?
Yes!
GLM has been on IHD for years now and dialysis even longer. Go back and read the posts she starts. This is nothing new. The medical world is against her, yet, GLM has NEVER followed up on the excellent advice from many on here who have been supportive and tried to help - both on the forum boards and in PMs. She's ALWAYS coming up with a "yes, but" reasons why the suggestions not apply to her. Example: GLM has been on hemo for over 5 years now. I'm sure this isn't the first time her machine has acted up on her and needed to be moved to another one. She knows that low dialysate temperature makes her knees ache. So, why couldn't she have said to the techs, "please be sure the temp on the other machine is set to at least 36.8 because my body reacts poorly to low temp. Thanks!" NO, she waits and says nothing until experiencing the pain.
I have no reservations that GLM is in a lousy center, yet on only one occasion can I remember her ever standing up for her rights. And the results? In less than a few months she's back in this same victim pattern. Yet, how much of this shit is due to her own making? I'm sorry, but given all I've read from her, if I was a medical professional from her current clinic, home hemo would be the last modality I would prescribe for GLM. She couldn't handle the responsibility. Besides, again, from what I have read, she really wouldn't do it unless a professional aide was assigned to help. Conveniently, her ex left just as they were supposed to begin training. But she knew all along he never was trustworthy enough, he was almost as childish as her 10 y.o. in accepting responsibility.
At the minimum. she needs to be in therapy (it's not for this only, bad family problems and personal relationships as well). And then, along with her therapist's support, find another dialysis center while no longer sabotaging good life choices. However, I don't feel so optimistic for her. No, GLM embraces the drama queen role and unfortunately, is her own worst enemy.
So yes, all you newbies who have responded to her by saying how awful she's being treated, are enablers. If you will notice, no long term IHDers - active on the boards for more than a couple of years - have posted to this latest addendum to her thread.
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I am sorry PatDowns,...Who are the enablers? Are you saying it's us?
Yes!
GLM has been on IHD for years now and dialysis even longer. Go back and read the posts she starts. This is nothing new. The medical world is against her, yet, GLM has NEVER followed up on the excellent advice from many on here who have been supportive and tried to help - both on the forum boards and in PMs. She's ALWAYS coming up with a "yes, but" reasons why the suggestions not apply to her. Example: GLM has been on hemo for over 5 years now. I'm sure this isn't the first time her machine has acted up on her and needed to be moved to another one. She knows that low dialysate temperature makes her knees ache. So, why couldn't she have said to the techs, "please be sure the temp on the other machine is set to at least 36.8 because my body reacts poorly to low temp. Thanks!" NO, she waits and says nothing until experiencing the pain.
I have no reservations that GLM is in a lousy center, yet on only one occasion can I remember her ever standing up for her rights. And the results? In less than a few months she's back in this same victim pattern. Yet, how much of this shit is due to her own making? I'm sorry, but given all I've read from her, if I was a medical professional from her current clinic, home hemo would be the last modality I would prescribe for GLM. She couldn't handle the responsibility. Besides, again, from what I have read, she really wouldn't do it unless a professional aide was assigned to help. Conveniently, her ex left just as they were supposed to begin training. But she knew all along he never was trustworthy enough, he was almost as childish as her 10 y.o. in accepting responsibility.
At the minimum. she needs to be in therapy (it's not for this only, bad family problems and personal relationships as well). And then, along with her therapist's support, find another dialysis center while no longer sabotaging good life choices. However, I don't feel so optimistic for her. No, GLM embraces the drama queen role and unfortunately, is her own worst enemy.
So yes, all you newbies who have responded to her by saying how awful she's being treated, are enablers. If you will notice, no long term IHDers - active on the boards for more than a couple of years - have posted to this latest addendum to her thread.
Um, how do you know that I havent taken anyone's advice??
I am in therapy. and im in a class specifically to work on my 'interpeersonal relationships' because, yes i suck at that sort of thing.
And actually this IS the first time they have ever manually put my blood back in me, in the almost 9 years ive been on D. Also, I was asleep, and USUALLY do ask that they check the temp. SO it has never been an issue before.
Of course i have had other machine issues, but not this specifically.
I am very aware that my ex husband was a childish idiot, and I would have done home hemo just fine without him, thing is, someone has to physically be here for the "just in case" bs... No one makes me go to the center, I go on my own tyvm. It would be no different if i had to do it myself. I did PD by myself no issues. (went really well to, I might add, but my body doesnt like the plastic tubing, unfortunately!)
And I wont lie, I am a bit of a pushover and confrontation scares the crap out of me, so I do tend to let a lot of crap happen before I finally say something, but I kid you not, when I wrote those letters to the clinic manager and my doctor, the clinic mgr called my therapist and told them I was suicidal (which I was not, and I am not sure why they would take it that way. I said I need help, I cant keep living like this, I am asking for you all to take me seriously here, listen to my concerns help me come up with a plan, and help me to help myself! that to me is not saying im going to commit suicide, but that I want to live and live well as possible.... maybe I am wrong there, but i dont think i am?!)
I really dont even give a crap anymore... my god, ive got more crap going on health wise than i even ever post about... im waiting on test results for lymphoma because the first one came back abnormal, my brain scan (i had to beg for, because the damn drs keep telling me all these odd symptoms are from dialysis) also came back wonky, so now i have to see a neuro to find out why. they still arent treating me for the RA because i have to wait for the results of the lymphoma crap.. plus other random stuff, so honestly, this is almost pointless to me. my body is falling apart, I dont really have a "support network" except my father who is aweosme but married to a psycho and lives in another town. And yea i have mental problems too, but at least i try...
think what you will of me.
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Id also like to add that I did not know that the temp on my machine would cause my RA to flare....
And I dont really see why anyone would call me a drama queen? I actively try to avoid drama. I dont even leave my damn house unless its for drs or medical crap... I dont have any "friends" that I see on a regular basis, and I dont get mouthy with people even when they probably deserve it. The reason I posted about things here is because its all I HAD. my therapist of 10 years died last year, and ive had 2 fill in therapists since, they finally got me a permenant one I just started seeing. I dont have the kind of friends I can talk to when I need a shoulder, either. SO I came here, thinking, ahhh these folks at least know what its like, but I guess I was wrong.
Sorry If ive bothered anyone, or caused anyone else to feel as PatDowns feels about me. (as they stated "If you will notice, no long term IHDers - active on the boards for more than a couple of years - have posted to this latest addendum to her thread.")
Thank you all for the kind words and advice.
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I am very aware that my ex husband was a childish idiot, and I would have done home hemo just fine without him, thing is, someone has to physically be here for the "just in case" bs... No one makes me go to the center, I go on my own tyvm.
Do you self cannulate? Because you're statement above is total BS, if you're not at the least capable of doing this. Besides, these panic attacks have been going on for years when something goes wrong with the machine while incenter. Maybe one day you'll develop positive coping skills to do home hemo. But right now, you haven't shown any reason why you could handle the responsibility.
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Dear Gothiclovemonkey just because one person says horrible things about you (and us) doesn't mean that everyone does, nor that it's true. On this page alone you have quite some long - termers giving you positive feedback, so don't get yourself worked up about PD's rather insensitive post.
However, do write those letters.
Love, luck and strength, Cas
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Dear Gothiclovemonkey just because one person says horrible things about you (and us) doesn't mean that everyone does, nor that it's true. On this page alone you have quite some long - termers giving you positive feedback, so don't get yourself worked up about PD's rather insensitive post.
However, do write those letters.
Love, luck and strength, Cas
Cas - I have no problem with you or anyone else calling my remarks insensitive. I'll stand by them. Unfortunately, sometimes the truth isn't so pretty.
Keep passing the open windows. - PatDowns
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I am very aware that my ex husband was a childish idiot, and I would have done home hemo just fine without him, thing is, someone has to physically be here for the "just in case" bs... No one makes me go to the center, I go on my own tyvm.
Do you self cannulate? Because you're statement above is total BS, if you're not at the least capable of doing this. Besides, these panic attacks have been going on for years when something goes wrong with the machine while incenter. Maybe one day you'll develop positive coping skills to do home hemo. But right now, you haven't shown any reason why you could handle the responsibility.
I would self cannulate if they would allow me to at this clinic, but they dont. Im not afraid of needles. I am afraid of idiots who dont know how to cannulate. I gave myself my allergy shots when I was 9 yea i know its different, but im fairly sure I could do it with a lil training...
So, yes, your right, total BS on my part, because Ive never been taught how to do it, That being said IF I had the training I could do absolutely ANYTHING (especially without him.)
Dont pretend to know me just from reading some posts on here... Half of the time I am posting because I am scared, or upset... so you're only seeing that part of me. I am more than that. So instead of judging me, maybe realize we are all here for the same damn thing. helping others, and supporting each other!
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I would self cannulate if they would allow me to at this clinic, but they dont. Im not afraid of needles. I am afraid of idiots who dont know how to cannulate. I gave myself my allergy shots when I was 9 yea i know its different, but im fairly sure I could do it with a lil training...
So, yes, your right, total BS on my part, because Ive never been taught how to do it, That being said IF I had the training I could do absolutely ANYTHING (especially without him.)
Dont pretend to know me just from reading some posts on here... Half of the time I am posting because I am scared, or upset... so you're only seeing that part of me. I am more than that. So instead of judging me, maybe realize we are all here for the same damn thing. helping others, and supporting each other!
Ah. another "yes,but" response. It is your right for the clinic to teach you how to self cannulate. If you are truly serious about wanting to learn how, then write a letter to the clinic administrator and forward a copy to your ESRD Network. Putting in your needles would be a fantastic confidence builder. One less reason, a major one at that, to have to rely on dialysis staff. Follow through.
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ok do me a favor and explain how this particular "yes but" comment is in anyway MY issue? I have asked, they tell me that only one damn woman in the area can train that, its the HH lady... and she only trains one person at a time, apparently. (which is the whole reason i never got to train for HH, if you remember...) I am not joking when I say this clinic is tiny, and ridiculous. And its also way under staffed. our social working is one that visits like 3 other clinics, the HH lady is only there once in a blue moon, i hardly ever see her, and we have 3 rns (one is brand new) and 5 techs (3 of which are new) the secretary and the clinic mtg. Come to think of it, I dont think they even do button holes here... There are only 2 shifts, maybe 20 chairs...
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If I may be the small voice of reason.
PD, please choose your words carefully. I is possible that it could be interpretted by Administration as an attack on GLM which could be responded to by sanction or locking of this thread.
GLM, one person's opinion is only that person's opinion. Your choices were to ignore it or to respond. You responded. You could have NOT responded. If PD made any further posts, meet them with the same simple 'no response'. Game over.
There is another way of taking this. By PD challenging you, he has stirred you up and you are attempting to prove yourself. Prodded your self-determination such that you are ready once again to fight the good fight.
Follow through on a few things and one day realize how PD HAS help make a difference.
Til then, Children Play Nice!
Charlie B53
Moderator
EDITED: Corrected spelling - she/he
Charlie B53
Moderator
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GLM - the RNs and techs on the floor are not equipped or allowed to teach self cannulation without an MD order. Talk to your doc about it, and if training is not supported at your clinic, ask about a temporary transfer to another clinic until you have mastered the technique.
Once you learn self canulation, you will always have the same idiot putting in the needles. :2thumbsup; The leap to home hemo is smaller and you might find it easier to get into a program.
A benefit is that the skill is totally transferable. I've dialized in many clinics as a vagrant (er, transient), and I have never received any resistance to self canulation - even at clinics that do not support home programs. If you use buttonholes, you should always bring your own needles since you can't count on clinics without home programs stocking them. The staff at the hospital where I had my transplant (hip, not kidney) had no problem letting me self puncture, though they were a bit apprehensive when I violated hospital policy by using my own needles. The scab picker in the JMS and Medisense needles are different, and I prefer the JMS since the poker is longer and I sometimes have to dig a bit to get out the scab. Fresenius tends to use JMS and DaVatia seems to use Medisense (NxStage). Medisense needles are also polarized and packed in pairs - only one has a backeye, and that should go in the arterial.
My doc took a transfer who was denied home treatment as "not a capable candidate" at another clinic. Last I heard he was succeeding at his home treatments. I suspect motivation and willingness to learn is more important than anything else when it comes to home hemo success.
It is your right for the clinic to teach you how to self cannulate.
This may depend on the state. I know that the DPRM (Massachusetts) has a requirement that any clinic not offering home dialysis have an affiliation agreement with one that does (MA 105 CMR 145.34), as well as a s-load of other requirements (such as having a backup generator and testing it under load quarterly).
The "catch" is the MD has the right to make a medical determination "not a candidate for self cannulation".
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PD, please choose your words carefully. I is possible that it could be interpretted by Administration as an attack on GLM which could be responded to by sanction or locking of this thread.
Charlie B53
Moderator
As I stated to Cas, I'm standing by my comments. Plus, I don't take to threats very well. So if you, as a moderator, feel my comments are an attack, then do what you must. NBD. - PatDowns
(BTW, I'm a male, not female as you referred to me in your post - unless the sexual orientation icon has changed!
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PD, I corrected my error she/he, I never looked at the symbol, my bad.
I wasn't threatening to do anything, merely pointing out that Administration may not take the same view as I do.
What I see by your posting as you are actually attempting to prod GLM into improvement, challenging her to action. It doesn't matter what your perceived intent is/was. If it results in favorable action then it can be construed as a good thing.
Some may call it constructive criticism.
If you really didn't care about GLM you never would have posted at all.
'Nuff said.
Charlie B53
Moderator
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What I see by your posting as you are actually attempting to prod GLM into improvement, challenging her to action. It doesn't matter what your perceived intent is/was. If it results in favorable action then it can be construed as a good thing.
Some may call it constructive criticism.
If you really didn't care about GLM you never would have posted at all.
'Nuff said.
Charlie B53
Moderator
Nope, I posted so newbies wouldn't waste their time responding to GLM. There are many others more deserving and needing support and help that would actually follow up on good advice. I gave up on GLM over 2 years ago. My continued posting on this thread was only to prove my point. Now, 'nuff said.
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Pat - GLM made a very critical statement - she would do self cannulate if allowed.
If she is anywhere near the pain in the butt I am, she can take that as a goal and not stop until she gets it. The key is not taking no for an answer unless there is a medical indication why it is inappropriate.
It does not matter if you give up on her - as long as she does not give up on herself.
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PatDowns,
No, not 'nuff said. I wasnt going to jump in until you made the "others more deserving" remark. Seriously? Who the hell are you, anyway to judge who is deserving? Admins, if you want to sanction me, go ahead. People like this and the general downhill course of this forum are the reasons I rarely log on anymore, and I am really sad for it. Was this the intention when this forum was created? I think not. Easy to be nasty when you have keyboard muscles. :(
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Pat - GLM made a very critical statement - she would do self cannulate if allowed.
If she is anywhere near the pain in the butt I am, she can take that as a goal and not stop until she gets it. The key is not taking no for an answer unless there is a medical indication why it is inappropriate.
It does not matter if you give up on her - as long as she does not give up on herself.
Let's see....GLM has been complaining about her clinic for YEARS now- everything from no staff members, including her nephrologist, ever listening to her, to rude treatment and inadequate/dangerous care.. Yet, she stays there! Is this normal behavior for someone who has a good sense of self to stay in a bad medical situation?
Yet, according to GLM, the next closest center is an an extra half hour away (but hasn't checked lately to see if any clinics have recently opened that are closer by). As has been suggested to GLM before, she can transient dialyze at another area clinic to get a feel for the place - CMS allows for this - before deciding to transfer. To a rational thinking person, wouldn't it be worth the extra 30 minute or so drive to receive better and more compassionate care? Oh, but I guess you look upon this behavior as "not giving up on herself!"
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PatDowns,
No, not 'nuff said. I wasnt going to jump in until you made the "others more deserving" remark. Seriously? Who the hell are you, anyway to judge who is deserving? Admins, if you want to sanction me, go ahead. People like this and the general downhill course of this forum are the reasons I rarely log on anymore, and I am really sad for it. Was this the intention when this forum was created? I think not. Easy to be nasty when you have keyboard muscles. :(
Frankswife - Thank you for jumping in. I appreciate your input and in no way feel the admin. should "sanction" you!
And, you are absolutely right about anonymous posting. Since I've stated twice now that I'm standing by my comments, then I shouldn't be adverse to including my real name. Unfortunately, I can't change my ID and use my real name like Bill Peckham does. So, I'll do the next best thing. Like "Hemodoc," I'll include my name in the signature section of my forum profile.
About my "more deserving" comment. Maybe "more appreciative" would have better represented my feelings. I probably would have backed off some if GLM had responded at some point with something of this nature, "thanks to all who have shown an interest in my situation by taking the time to give me really good advice. Although my goal is to better take care of myself, I'm just not at a place yet to move forward." If she would just take responsibility for her situation as opposed to always blaming others. A true sign victimhood mentality.
Please continue posting! - PatDowns
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Let's see....GLM has been complaining about her clinic for YEARS now- everything from no staff members, including her nephrologist, ever listening to her, to rude treatment and inadequate/dangerous care.. Yet, she stays there! Is this normal behavior for someone who has a good sense of self to stay in a bad medical situation?
I guess I'm a newbie here because I don't post that often and just lurk. I've actually been a member for 5 years. So yes, I have seen Gothic's previous posts.
Everyone has their own way of coping. What may seem like griping may just be...well, the actual reality for that person. It just is. Or maybe it's not. None of us have any way of knowing what each of us are really going through. Every problem is different, and our ability to deal with it is different day to day, week to week, year to year. Someone else's very best effort might be your version of coasting along in your life. A problem that you could fix in a matter of days might take YEARS for someone else. So many things can get in the way of progress--lack of money, lack of access, lack of education, where you live, who's around you, what's around you--the list goes on and on. But that doesn't mean GLM or anyone of us aren't trying. But no one should feel like they have to justify their situation to anyone.
I think everyone has the right to use these forums in the way that they need to -- unless it is abusive to others. A lot of times the forums are just a place to vent. To tell someone, anyone, how you really feel, how you perceive your situation, to talk about all that is going wrong with your life. The struggle is real!
That's my :twocents; .
Maybe we are here to advise, encourage or kick each others butts, but I think most importantly we are here to listen and bear witness to each others journey.
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Let's see....GLM has been complaining about her clinic for YEARS now- everything from no staff members, including her nephrologist, ever listening to her, to rude treatment and inadequate/dangerous care.. Yet, she stays there!
That's what this site is for! So you're really saying she's using the site as intended. Well done, GLM!
This is the place to come to for venting, complaining, asking for help, encouragement, whatever. Each person here might be here for a different reason. No one comes here to be judged, and I don't think any of us here can know true state of mind, physical condition, life circumstances, or anything else of others here. We only know what is said in just a few paragraphs. We don't see the pain or joy any of us feels when jumping (or crawling) from bed each morning, the smile and love on each other's faces when they look at their children, the laughter at a joke. Without all of this knowledge, we don't *know* each other. For all any of us know, the wrong statement could be the thing that pushes someone into giving up. The right response might help someone try for just one more day.
Maybe Pat Downs lashes out at GLM because he sees something in her that causes him to relive his own pain. It doesn't make it right for him to hurt GLM. Maybe GLM comes here because she has no one to listen to in her day-to-day life. She's had some very sucky things happen to her. It isn't for me, or any of us, to call her a drama queen - that's a judgement, not a fact. Do we know if she's stating only facts? No. Is it better to give her the benefit of the doubt - yes.
Is it that hard to be nice to each other? We each have enough to deal with in "real" life. Why make it difficult here, too?
(edited to fix typos)
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Maybe we are here to advise, encourage or kick each others butts, but I think most importantly we are here to listen and bear witness to each others journey.
All of your comments here are very valid.
Its probably best to remember "if you don't have something nice to say don't say it." Now we completely disregard that when we talk about care providers and our health, but we should try to follow that with other member's lives.
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:beer1; When I read all the posts on this thread I am thinking, "Wow. Aside from obvious health issues, it's awful how kidney disease takes it's toll on people".
I wish everyone a brighter and happy day! :)
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The only thing i have left to say thats been brought up since I last posted is this
I DO thank people in my threads, for helping me and giving advice. I appreciate all of the people who care enough to post. It means the world to me.
I dont understand why this person assumes I take no advice, either, because I do,and have, on many occassions.
Yea, I am still at the same clinic, and YES I have checked to see if anything new is available. In fact one closed. I cant really see spending that gas to go out of town, PLUS if I did do that, Id also need to pay for child care for my son after school. possibly even before, depending on what time theyd have for me... I absolutely cant afford bthat. It has absolutely nothing to do with my self worth. Or wanting to be drama queen. I just dont have that kind of money. Its hard enough keeping all of my appointments with the cost of gas and most of them being about an hour away. (5 times for this jan that i have to go there! and already 2 for next month)
You DO NOT know what I do with my life, and How DARE you think I have given up. I still go, dont i? If i gave up, I wouldnt go. its quite the opposite actually. and I sure the hell wouldnt waste anyones time asking what they might do in my situation if I had given up! I want to be here for my son, even though my quality of life is considered very poor, due to my OTHER health issues. I still get up every day, I still make breakfast and do some light chores (granted I could do more there HA) and I still get my son to school, get my arse to D or the YMCA on my off days, I stil go to all the appointments, therapy AND group therapy, I still come home and put dinner on the table and help my son, play with him... HOW IS THAT GIVING UP!???!?
I dont know what I did to irk you so badly, Perhaps I didnt thank you enough for your liking?! I really honestly from the bottom of my heart appreciate the USEFUL comments that I have received over the years here at IHD from some truly amazing folks! But to say I dont deserve to have a place to vent or that I dont appreciate it is just plain hurtful.
And just for the record, I am not the only one who thinks this clinic is horrible. But their numbers are good so they can get away with saying they are the best "in the area" (only in the damn area...)
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:beer1; When I read all the posts on this thread I am thinking, "Wow. Aside from obvious health issues, it's awful how kidney disease takes it's toll on people".
I wish everyone a brighter and happy day! :)
No doubt!
I know, for me, it saved me in many ways. I used to have a very bitter outlook on life, now I am fairly easy going. Just need to vent it all out occassionally, and I feel loads better.
About my "more deserving" comment. Maybe "more appreciative" would have better represented my feelings. I probably would have backed off some if GLM had responded at some point with something of this nature, "thanks to all who have shown an interest in my situation by taking the time to give me really good advice. Although my goal is to better take care of myself, I'm just not at a place yet to move forward." If she would just take responsibility for her situation as opposed to always blaming others. A true sign victimhood mentality.
Please continue posting! - PatDowns
I dont understand how you say I dont take responsibilty for my situation and "always blame others" Im not blaming anyone, I am simply stating that my clinic sucks, and this is what i dealt with today... thats it. venting basically!
Because I dont have people I can talk to abot this... not really... not anyone that understands it all. Sure, I can talk to my therapist in the whole 30 mins i see here every other week, but I am also dealing with other issues that need dealt with. and again, she doesnt understand what its like. so I came here.
I dont have a victim mentality. I know, that in the past (when i first started D, for about a year) i WAS a crappy patient, and fully admit that, but its been 8 freakin years, and Ive lost weight, Ive taken the pills, made my treatments, and all that jazz. so im sorry if i dont understand why you would think so poorly of me.
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Maybe Pat Downs lashes out at GLM because he sees something in her that causes him to relive his own pain.
And in your mind, what might that be Deanne?
I was 22 when starting dialysis in 1978. The clinic staff was supportive and gave me good education about how to live well with kidney failure. After about a year I earned the privilege of being on the evening selfcare shift - the only one in Atlanta at that time (just 13 clinics total in the Atlanta metro area). During that time I started going out with one of the evening shift techs. I would stay late after treatment to talk with her. She was responsible for reprocessing the dialyzers from the shift. Ever heard of dialyzer reuse? It was a nasty procedure involving packing the dialyzers in formaldehyde between uses. That's human pickling juice! I did research. Basically, the only reason to reuse was to maximize profits. So I decided I no longer wished to use reprocessed dialyzers and went to the head nurse/administrator requesting a new one each treatment. That was my first experience being labeled a troublemaker.
I was immediately taken off the night shift and put on days. I was told either accept reuse or go somewhere else for treatment. Remember, this was in 1979 - there weren't dialysis centers on every corner and I was only 23 years old. In an effort to make sure the other patients would know what happens to "troublemakers," the HN/Admin. came out on the floor while all were dialyzing. In a loud voice for all to hear, she said to me that until I found another clinic, I would only be dialyzing twice a week, even though my prescription was for 3 times. Without even a blink I shot back just as loudly, if she tried to unilaterally change my nephrologist's orders, I would have my lawyer contact her immediately. I received 3 weekly treatments until leaving a few weeks later.
My new clinic was hospital based and did not reuse. When I went to visit, the tech I was dating accompanied me. I wasn't yet sufficiently knowledgeable about what to look for in a clinic. She was my experienced eyes. I switched to them. Even though they offered a 3rd shift, I had to be on the machine by 4:30 pm instead of 6:30 like the other center. Plus, I lost autonomy because the clinic did not allow for selfcare beyond selfcannulation. However, it was a choice I was willing to make because not reusing dialyzers was more important to me.
It was not long after this experience that I became involved in NAPHT, the national kidney patient advocacy organization (now known as AAKP) and the ESRD Network as a patient representative. About a year after that I became a full time employee of the NKF of Georgia. For the next 11 years, one year post transplant, I dedicated myself to patient advocacy and helping patients and their families learn how to lead better lives with renal failure.
When I had to (reluctantly) go back on dialysis after losing my transplant in 2004, I once again had to watch out for bad care. I left the first clinic after a year. I ended up at a DaVita clinic about 30 minutes from home. Although a good friend, another patient who was more of an advocate than myself, advised me to stay away from this provider. I thought this clinic would be different because the administrator's background was as a dietitian, I knew the center's dietitian from 30 years before, and one of the techs from my former center. Plus, it was new and small. Unfortunately, the honeymoon lasted less than a year. Davita let the administrator go due to profit issues. You see, 99.9% of clinic administrators are RNs. The reason? If short staffed, they can go out on the floor and no PRNs needed to be hired. Not the case with a dietitian admin. Quality care issues quickly arose for numerous reasons. A patients spouse and I tried to work within the system to get things changed to no avail. We even had a meeting with 2 ESRD Network reps, the regional head of CMS, and DaVita's regional VP.
About 20 patients and family members attended with many of the patients coming in on their day off. One patient was disabled with a leg amputation and a few others used public transport benefits to get there. I was so proud of this group because I understood what it meant to fight the status quo - I wanted to cry. As I write this a huge lump is in my throat. Unfortunately, even with the CMS and Network reps there, the only thing the DaVita rep would agree to was get a new cleaning service to make sure the floors are mopped and waiting room chairs cleaned. Over the next 3 years I had the State come out numerous times and inspect the place. Administration tried their best to intimidate me. The medical director even said I was not complying with HIPPA rules! Patients are not subjected to HIPPA. However, this med director was either dumb or arrogant enough to honor my request that he put down in writing that I couldn't talk with other patients about what was going on in the clinic.
Some of what I had to go through
* Caught the clinic forging signatures on a patient education forms. Remediation - clinic got a fulltime admin. to oversee these activities.
* Found someone elses blood on my set up tubing a few times. Remediation - I was allowed to begin doing station/chair cleaning and set up from then on.
* Nurse forgot to add calcium packets to my dialysate bath 2 treatments in a row. Wasn't until the second time that I figured out the problem. Staff had no clue. Remediation - going forward I would be responsible for mixing my bath.
Yes, I was taking care of myself, but I still saw and reported horrible things happening to others. Finally, I could no longer take being in that toxic atmosphere and left for my current clinic. Been here for 5.5 years now. It's not perfect, but for the most part staff and my neph listen.
So Deanne, if you consider standing up for my rights or not allowing dialysis staff to run roughshod over me, "reliving my own pain," then guilty as described. However, I'm 60 years old now and still alive. If GLM continues on her current path, she won't make it another 5 years.
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The purpose of this site is too support people not to down them. It is a site for vending your frustrations and feelings and hopefully getting support. From the looks of it "Gothic" has a lot more health issues besides kidney failure.
The old saying "If you don't have something nice to say, keep quiet" might apply here.
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It sounds like you're saying "I could do it, she can, too." It seems like you're comparing yourself to her. Here's what I see:
You talk a lot about how other people helped you. They were there in-person to be an extra hand for you. You're 60 years old and it sounds like you're well-educated and probably highly intelligent, maybe indicating that you had good family support, and possibly lived most of your life with a good job or another source of regular income. You don't mention other medical or psychological / psychiatric issues. You don't mention extreme financial struggles. You don't mention having been a young single parent to a special needs child. From what I've read of GLM's posts, these are parts of her life. I don't know her and as I said in my earlier message, all we know of people is what we read here, so I am acknowledge making assumptions.
It just doesn't make sense to me that you'd waste the time and energy it requires to come back to repeatedly bash someone, especially someone who has absolutely nothing in common with you. It's nothing to you if she lives for another five years, so what's your agenda? Mine is that I sometimes have a lot of fun figuring people out and arguing with them. I try not to argue too much with my friends. They become un-friends if I do that too often! So here I am, arguing here instead!
One of the things you said is that you've offered GLM advice before and it was disregarded. I had a friend ask me for advice many times in the past and I ended up frustrated and angry because I thought I was giving him great advice and he didn't once do as I suggested. I finally realized that an offer of advice does not equal "ownership" of the problem. Maybe the advice I gave was fine... for someone else. I wasn't walking in his shoes. I only saw a tiny part of his picture. I bit my tongue when I talked to him and we're still friends. Over time, I came to see that he's a highly anxious person and probably couldn't leave his comfort zone to do anything that I suggested. It's the old adage "You can lead a horse to water, but no matter how much you berate and beat that horse, it doesn't mean it's going to take a drink." If you get upset because that horse doesn't want that water, it's your problem, not the horse's problem.
GLM has a choice to do as you tell her to do or not. You have the choice to keep trying to tell her what to do even though it should be obvious by now that she won't or CAN'T do what you're suggesting. She isn't you. I choose to believe that she, and everyone else here, does the best she can with the resources she has available to her, both physical resources and emotional/psychological resources.
If we (any of us here) can't provide the resources to go along with the advice, then it's possible that the most we can do is listen so she doesn't feel quite so alone in her battles. I can't relate very well to many people here because I've always been one of the lucky ones. I have a great job that offers financial security and insurance benefits. People tell me I'm bright. I have local friends. I'm physically fit. I have good health overall and no psychological issues (don't ask my friends or they might say differently about that!), etc. I think many here struggle with each of these things every day. I'm not going to pretend I know what their lives are like, so I can't usually offer advice about how to deal with their struggles. I don't have the experience needed. What I *can* offer is kindness. I'm just trying to do my part - someday I might need the same from someone else.
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It sounds like you're saying "I could do it, she can, too." It seems like you're comparing yourself to her. Here's what I see:
You talk a lot about how other people helped you. They were there in-person to be an extra hand for you. You're 60 years old and it sounds like you're well-educated and probably highly intelligent, maybe indicating that you had good family support, and possibly lived most of your life with a good job or another source of regular income. You don't mention other medical or psychological / psychiatric issues. You don't mention extreme financial struggles. You don't mention having been a young single parent to a special needs child. From what I've read of GLM's posts, these are parts of her life. I don't know her and as I said in my earlier message, all we know of people is what we read here, so I am acknowledge making assumptions.
It just doesn't make sense to me that you'd waste the time and energy it requires to come back to repeatedly bash someone, especially someone who has absolutely nothing in common with you. It's nothing to you if she lives for another five years, so what's your agenda? Mine is that I sometimes have a lot of fun figuring people out and arguing with them. I try not to argue too much with my friends. They become un-friends if I do that too often! So here I am, arguing here instead!
One of the things you said is that you've offered GLM advice before and it was disregarded. I had a friend ask me for advice many times in the past and I ended up frustrated and angry because I thought I was giving him great advice and he didn't once do as I suggested. I finally realized that an offer of advice does not equal "ownership" of the problem. Maybe the advice I gave was fine... for someone else. I wasn't walking in his shoes. I only saw a tiny part of his picture. I bit my tongue when I talked to him and we're still friends. Over time, I came to see that he's a highly anxious person and probably couldn't leave his comfort zone to do anything that I suggested. It's the old adage "You can lead a horse to water, but no matter how much you berate and beat that horse, it doesn't mean it's going to take a drink." If you get upset because that horse doesn't want that water, it's your problem, not the horse's problem.
GLM has a choice to do as you tell her to do or not. You have the choice to keep trying to tell her what to do even though it should be obvious by now that she won't or CAN'T do what you're suggesting. She isn't you. I choose to believe that she, and everyone else here, does the best she can with the resources she has available to her, both physical resources and emotional/psychological resources.
If we (any of us here) can't provide the resources to go along with the advice, then it's possible that the most we can do is listen so she doesn't feel quite so alone in her battles. I can't relate very well to many people here because I've always been one of the lucky ones. I have a great job that offers financial security and insurance benefits. People tell me I'm bright. I have local friends. I'm physically fit. I have good health overall and no psychological issues (don't ask my friends or they might say differently about that!), etc. I think many here struggle with each of these things every day. I'm not going to pretend I know what their lives are like, so I can't usually offer advice about how to deal with their struggles. I don't have the experience needed. What I *can* offer is kindness. I'm just trying to do my part - someday I might need the same from someone else.
No psyche issues? I lost my father at age 8 from a heart attack, while my mother was in the hospital dealing with breast cancer. She comes home with a mastectomy and no husband. My mother died from bone cancer 5 years later - on Valentine's Day - when I was 13. Now orphaned, my sister, 14 years my senior, divorced with a young child of her own, became my guardian. While I was appreciative, our relationship was hardly ideal. She sold the only home I knew and moved us to the other side of town. A year later, she shipped me off to boarding school. Six months after that, we moved to Atlanta. And then after waiting a dozen years or so for the inevitable, I lost my kidney function. Talk about abandonment issues! I started therapy at 16 after trying to commit suicide on a new years eve, then stayed with the therapist for good for 27 years - from age 18 until his retirement when I was 45. Group therapy was my saving grace from 1993 until about a year ago
"One of the things you said is that you've offered GLM advice before and it was disregarded. " - Not just me, many others from the boards as well. It's not my position to say who, but I personally know of 4 (women) IHDers who contacted GLM through PMs and offered their help/support. It didn't take too long for them to become frustrated with her.
"You don't mention extreme financial struggles." - In 2000 my business started heading south and it became a burden to even pay for my transplant meds. I was living off credit cards, but couldn't get any financial help because I was considered too wealthy if having credit cards to rely on! At the time I went on home hospice in 2004, I had lost condo and had to declare bankruptcy. Since then, my lifestyle has changed, but with hard work, while on dialysis, I've built my FICO score back to respectability. And, BTW, I don't blame our medical system. It was MY CHOICE to leave a decent job to start my own business. I knew the rules of the game.
"It sounds like you're saying "I could do it, she can, too." It seems like you're comparing yourself to her. " - not in the least. Nowhere in my posts over the last couple of days have I stated that. You are once again projecting. Read my posts with a little less anger.
"One of the things you said is that you've offered GLM advice before and it was disregarded. I had a friend ask me for advice many times in the past and I ended up frustrated and angry because I thought I was giving him great advice and he didn't once do as I suggested. I finally realized that an offer of advice does not equal "ownership" of the problem. Maybe the advice I gave was fine... for someone else. I wasn't walking in his shoes. I only saw a tiny part of his picture. I bit my tongue when I talked to him and we're still friends. Over time, I came to see that he's a highly anxious person and probably couldn't leave his comfort zone to do anything that I suggested. It's the old adage "You can lead a horse to water, but no matter how much you berate and beat that horse, it doesn't mean it's going to take a drink." If you get upset because that horse doesn't want that water, it's your problem, not the horse's problem. " - I wrote this in response to Frankswife: I probably would have backed off some if GLM had responded at some point with something of this nature, "thanks to all who have shown an interest in my situation by taking the time to give me really good advice. Although my goal is to better take care of myself, I'm just not at a place yet to move forward." If she would just take responsibility for her situation as opposed to always blaming others.
When I was president of the Atlanta AAKP chapter, one of the first things I did was move the meeting location from the "rich and lily white"north side of town, to a well-respected hospital in mid-town Atlanta. With 65% of esrd patients being black and financially challenged, I wanted to make it easier for them to come to the meetings. I learned from an older black gentleman who was on the ESRD Network and a transplant recipient, how to "hear with my eyes" when going into majority black Southern clinics in the 1980s. He taught this well intentioned, but experience lacking young white boy why black folk address each other as Mr. and Mrs./Miss (not Ms.). He explained to me the reason why black women, especially those 50+, wore "fancy" hats. But his greatest lesson was teaching me to understand the concept of "hearing with my eyes."
EDIT: Forgot to mention, I worked in an addiction treatment center for 5 yers before leaving and starting my own business. I worked with alcoholics, drug addicts, and both female and male (very under publicized, even to this day) anorexics/bulimics.
And, my only agenda was to call out GLM. Obviously it's not something easy to do, but....someone had to do it. Folks can disagree with me and call me mean spirited. I'm fine with that. I'm not running for president. Now, I'm off to dialysis.
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No psyche issues? I lost my father at age 8 from a heart attack, while my mother was in the hospital dealing with breast cancer. She comes home with a mastectomy and no husband. My mother died from bone cancer 5 years later - on Valentine's Day - when I was 13. Now orphaned, my sister, 14 years my senior, divorced with a young child of her own, became my guardian. While I was appreciative, our relationship was hardly ideal. She sold the only home I knew and moved us to the other side of town. A year later, she shipped me off to boarding school. Six months after that, we moved to Atlanta. And then after waiting a dozen years or so for the inevitable, I lost my kidney function. Talk about abandonment issues! I started therapy at 16 after trying to commit suicide on a new years eve, then stayed with the therapist for good for 27 years - from age 18 until his retirement when I was 45. Group therapy was my saving grace from 1993 until about a year ago
"One of the things you said is that you've offered GLM advice before and it was disregarded. " - Not just me, many others from the boards as well. It's not my position to say who, but I personally know of 4 (women) IHDers who contacted GLM through PMs and offered their help/support. It didn't take too long for them to become frustrated with her.
"You don't mention extreme financial struggles." - In 2000 my business started heading south and it became a burden to even pay for my transplant meds. I was living off credit cards, but couldn't get any financial help because I was considered too wealthy if having credit cards to rely on! At the time I went on home hospice in 2004, I had lost condo and had to declare bankruptcy. Since then, my lifestyle has changed, but with hard work, while on dialysis, I've built my FICO score back to respectability. And, BTW, I don't blame our medical system. It was MY CHOICE to leave a decent job to start my own business. I knew the rules of the game.
"It sounds like you're saying "I could do it, she can, too." It seems like you're comparing yourself to her. " - not in the least. Nowhere in my posts over the last couple of days have I stated that. You are once again projecting. Read my posts with a little less anger.
"One of the things you said is that you've offered GLM advice before and it was disregarded. I had a friend ask me for advice many times in the past and I ended up frustrated and angry because I thought I was giving him great advice and he didn't once do as I suggested. I finally realized that an offer of advice does not equal "ownership" of the problem. Maybe the advice I gave was fine... for someone else. I wasn't walking in his shoes. I only saw a tiny part of his picture. I bit my tongue when I talked to him and we're still friends. Over time, I came to see that he's a highly anxious person and probably couldn't leave his comfort zone to do anything that I suggested. It's the old adage "You can lead a horse to water, but no matter how much you berate and beat that horse, it doesn't mean it's going to take a drink." If you get upset because that horse doesn't want that water, it's your problem, not the horse's problem. " - I wrote this in response to Frankswife: I probably would have backed off some if GLM had responded at some point with something of this nature, "thanks to all who have shown an interest in my situation by taking the time to give me really good advice. Although my goal is to better take care of myself, I'm just not at a place yet to move forward." If she would just take responsibility for her situation as opposed to always blaming others.
When I was president of the Atlanta AAKP chapter, one of the first things I did was move the meeting location from the "rich and lily white"north side of town, to a well-respected hospital in mid-town Atlanta. With 65% of esrd patients being black and financially challenged, I wanted to make it easier for them to come to the meetings. I learned from an older black gentleman who was on the ESRD Network and a transplant recipient, how to "hear with my eyes" when going into majority black Southern clinics in the 1980s. He taught this well intentioned, but experience lacking young white boy why black folk address each other as Mr. and Mrs./Miss (not Ms.). He explained to me the reason why black women, especially those 50+, wore "fancy" hats. But his greatest lesson was teaching me to understand the concept of "hearing with my eyes."
EDIT: Forgot to mention, I worked in an addiction treatment center for 5 yers before leaving and starting my own business. I worked with alcoholics, drug addicts, and both female and male (very under publicized, even to this day) anorexics/bulimics.
And, my only agenda was to call out GLM. Obviously it's not something easy to do, but....someone had to do it. Folks can disagree with me and call me mean spirited. I'm fine with that. I'm not running for president. Now, I'm off to dialysis.
If you decide to rage quit IHD please don't delete all your posts
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Thank you PatDowns! It's great to meet you. You've endured awful struggles and came out on top. This is something that I bet GLM can learn a lot from. It isn't specific advice, but a show of strength, endurance, and courage on your part. I suspect many people are glad to call you their friend.
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A long long time ago I was a national/international track champion. One of my track coaches use to push me so hard, I hated him for it. Eventually I realized that the more he cared for someone, the harder he pushed them to realize their full potential (both on and off the track). But for so long I felt a resentment. My coach pushed me, my parents pushed me, the media pushed me and then out in the world, people, friends and employers pushed me. Everything I did I felt I had to do to perfection or else. Then I had financial issues (been laid off more than once), marriage issues (divorce) and health issues. I also went thru some over-the-top pretty darn bizarre scary stuff. Stuff you only see in movies or read about in headlines. More pushing...more feeling as tho I have to keep ahead of it all. But darn it, there comes a point when you don't want to be "the strong one" anymore. Just once you want to be weak and be able to say "I've had enough! I can't take it anymore!". And when you say that, everyone freaks out. And then you feel like dirt. I am sick of that. But that's my problem, not theirs.
A doctor once told me that depending on what we go through and the frequency of drama/trauma we go thru and the older we get, the harder it is to sometimes bounce back. And sometimes we don't always bounce back. At least not in the way we use to. But we learn coping skills and put into place mechanisms we hope we can rely on. Sometimes it's just about taking things by the day or literally by the minute. I don't think any of us were meant to be perfect. I don't think we have to be a champion at anything, either. We can "just be" and that's okay. Or it ought to be. When life gets you down or makes you angry or you feel you are being pushed over your limits...it helps to be able to come here and say so. It's also great to try to help someone else if you think you may be able to. Sometimes it's good to push someone, sometimes not. I think we all know what we can/cannot handle and speaking up goes a long ways towards helping ourselves. We each have our strengths and our weaknesses. Our silly side and are serious side. This is who we are and this forum let's us be.
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If you decide to rage quit IHD please don't delete all your posts
Thanks for your advice, Mr. Peckman. I'll take it with a "pinch" of salt. LOL
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We all have things that shape us into who we are. I try to look at my life with no regrets. everything ive gone thru shaped me into who i am otday.
Patdowns, I too lost my mother when I was 13. She had multiple health issues. I was late waking up for school, went in to tell her I was going to school, and she was dead. that kind of loss is hard to deal with. I am sorry for your loss and hardships.
I dont know why you keep saying i blame others? You keep accussing me of all these things but then dont tell me what you mean or how you figured? so please do. One cant hardly change if they dont understand what they are doing wrong.
So yall are frustrated because you think i didnt follow anyones advice? but how the hell does anyone know what i did or didnt do? just because I dont post about something doesnt mean it didnt get done.
And lastly, as many have stated, maybe I just wanted to vent to people who could understand whats going on. With the exception of talking to my 11 yo son, and medical folk : doctors/therapist/dialysis techs/nurses, I hardly have conversation with anyone offline.
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Pat - did you have to keep dating a tech a secret? Medical staff dating patients is considered a serious boundary violation, even when the patient consents, and can cost a professional his/her license.
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Let's see....GLM has been complaining about her clinic for YEARS now- everything from no staff members, including her nephrologist, ever listening to her, to rude treatment and inadequate/dangerous care.. Yet, she stays there! Is this normal behavior for someone who has a good sense of self to stay in a bad medical situation?
I guess I'm a newbie here because I don't post that often and just lurk. I've actually been a member for 5 years. So yes, I have seen Gothic's previous posts.
Everyone has their own way of coping. What may seem like griping may just be...well, the actual reality for that person. It just is. Or maybe it's not. None of us have any way of knowing what each of us are really going through. Every problem is different, and our ability to deal with it is different day to day, week to week, year to year. Someone else's very best effort might be your version of coasting along in your life. A problem that you could fix in a matter of days might take YEARS for someone else. So many things can get in the way of progress--lack of money, lack of access, lack of education, where you live, who's around you, what's around you--the list goes on and on. But that doesn't mean GLM or anyone of us aren't trying. But no one should feel like they have to justify their situation to anyone.
I think everyone has the right to use these forums in the way that they need to -- unless it is abusive to others. A lot of times the forums are just a place to vent. To tell someone, anyone, how you really feel, how you perceive your situation, to talk about all that is going wrong with your life. The struggle is real!
That's my :twocents; .
Maybe we are here to advise, encourage or kick each others butts, but I think most importantly we are here to listen and bear witness to each others journey.
Thank you for saying what you have said, drawingdami, it is very much appreciated !
... And it is very true: we all deal with difficult situations differently ...
For example, at one time (whilst I was still pre-dialysis), I had terrible problems with certain medics and I was shocked, devastated and - eventually - traumatized,
because my bad experiences with medics happened on the NHS (National Health Service in GB) and unfortunately it did not look as if there was any way out...
... After putting into place my complaints and going through all possible complaints-procedures without seeing any positive result,
my husband and I put our thinking-hats on and then we decided, that there was no other way out, except for me to get private health-care from then on
and in order to pay for my health-care privately (including blood-tests etc.), we had to cut down considerably on many basical things ...
... And so I was finally given a chance, to receive proper professional medical care from then on ...
... And then - all of a sudden - a private doctor referred me to an NHS-doctor and I have received the very best NHS-health-service (including dialysis !!!) ever since...
... To cut a long (and very sad) story short: Without letting us know, the authorities took our complaints very seriously indeed and they investigated thoroughly
and the doctors my husband and I did complain about, have eventually "been resigned" ...
... and it is good to know, that they have no longer a chance to traumatize any more patients ... :grouphug;
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Pat - did you have to keep dating a tech a secret? Medical staff dating patients is considered a serious boundary violation, even when the patient consents, and can cost a professional his/her license.
Hey Simon - here's the short answer...no, we didn't have to keep secret that we were dating.
The longer version...You have to understand, this was 35 years ago. The ESRD community was much different than it is today. Corporate dialysis, while firmly establishing a foothold, comprised only around 33% of clinic ownership, with National Medical Care as the leader. The rest were either hospital based or owned by the nephrologists . It wasn't yet considered a conflict of interest for physicians, in this case the nephrologists, to refer patients for treatment to a facility they personally owned.
The vast majority of these clinics were small operations, with maybe 10-12 chairs. In some ways, because the treatment was so new and clinics so few, there existed a "family" environment between patients and staff. Don't get me wrong, there was an understood hierarchy, starting with the nephrologist and administration including the head nurse. However, the lines were more blurred between patients and floor staff, especially with 3 day a week interaction. It wasn't at all uncommon for them to become friends, date and even get married.
I dated and went out with numerous nurses/techs from the clinics where I dialyzed during my first "tour of duty" on dialysis. The tech referred to in a previous post, and I dated for about 3 months or so and the relationship ended OK. However, a floor nurse I dated (coincidentally, we lived in the same apt. complex, a couple of buildings over from one other) didn't take it so well when I wanted to stop seeing her. I'll just say that I had to watch my back for awhile when she was scheduled on my shift. Sometimes the UF on my machine mysteriously was turned up. Others I went out with a few times was on a friends only basis. That was fine by me. I enjoyed their company and there was no pressure having to explain my on going medical treatment.
The bigger question is why would I want to date those who were responsible for my medical care?
I was engaged when starting dialysis. Although I was only 22 at the time, "E" and I had been dating since her senior year in high school. She even wanted to be my partner so I could do home hemo. However, we had a pretty volatile relationship and I wasn't all that anxious to having "E" a major part of my medical care. I figured going in for treatment and being done with it was the best way to go. Anyway, despite my best plans that dialysis wouldn't negatively effect our relationship, it did. I'll take the majority of the blame, but we were young and immature. I pretty much hijacked the relationship and we broke up for good a year and a half later. "E" related to me how her mother told her it was one thing to marry for better or worse, but why marry, especially so young, someone already with a chronic disease with a lousy mortality rate? I had the same feelings, but never expressed them to "E." Hearing it from her was devastating. From then on I never looked upon myself as marriage material, I was damaged goods.
Anyway, dating dialysis staffers helped me to get over my break up. I had nothing to prove - they knew about my illness - and there was no pressure. In the short term, I felt like I could still be desireable. Yet, there was the darker side of me, always wanting to ruin something good, saying they were only with me out of pity. I never allowed future relationships to go longer than 6 months. I always found a way to end them. Ironically, it took some 30 years later, after losing my transplant to finally realize how that way of thinking kept me from fully enjoying life.
Probably more info that you wanted! - PatDowns
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So you are the kind of person who will talk crap but not back it up. I see.
Thats cool. 8) so cool
:bandance;
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Seems in some ways those older days had many advantages over now. All the plastic, computers, corporate greed, depersonalization, doesn't leave much room for personality, compassion, friendship.
PD, have you shared all this with anyone here before now? Sorta feels right to better understand people don't it? I like it. Many of us don't even know our next door neighbors like we did when we were kids. Further proof of that 'Divided we fall' concept.
I don't know of any that grew up with the proverbial 'silver spoon'. Most appreciate every little thing that we have managed to earn, and hang onto. I, for one, still miss working,, being useful, self sufficient? Well, sorta. I'm still married. I can't remember what it was like (much) before.
Hope you decide to hang around, there are a lot of other people on these boards. We ALL need each other. Whether we are willing to admit it yet or not. None of us are getting off this rock alive. I might, I'm gonna jump up high at the very last second! May not get very far, but I'm gonna try!
Take Care,
Charlie B53
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It wasn't at all uncommon for them to become friends, date and even get married.
Wow - I learned a lot.
Nowdays, staff is even trained that offering a patient a ride home is an unprofessional "boundary violation", whereas, arranging an ambulance or a cab is not. Romance, like counting to five with the Holy Hand Grenade of Antioch, is right out.
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Thank you for sharing all of that PatDowns. I was diagnosed at 9 years old and grew up feeling like damaged goods, not worthy of even having friends. I didn't have anyone to call a friend from age 9 until I started college and didn't have emotional support at home, either. I learned very young to be very self-sufficient in everything.
I've never been able to have a long-term relationship. I freak out if a guy gives me a second glance. I was sure I'd be dead by 30 and didn't want anyone to waste his life on me. Here I am in my 50s! I sometimes wonder what my life would be like now if I'd had other people in my life at a young age. Mostly curiosity though. I turned out to be a survivor and someone I can be proud of.
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Further proof of the credits I have given you all that you are true Warriors. The common person hasn't a clue how tough you are.
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Further proof of the credits I have given you all that you are true Warriors. The common person hasn't a clue how tough you are.
MAkes me think of an old song, don't remember the artist.
Walk a mile in my shoes.
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Thank you for sharing all of that PatDowns. I was diagnosed at 9 years old and grew up feeling like damaged goods, not worthy of even having friends. I didn't have anyone to call a friend from age 9 until I started college and didn't have emotional support at home, either. I learned very young to be very self-sufficient in everything.
I've never been able to have a long-term relationship. I freak out if a guy gives me a second glance. I was sure I'd be dead by 30 and didn't want anyone to waste his life on me. Here I am in my 50s! I sometimes wonder what my life would be like now if I'd had other people in my life at a young age. Mostly curiosity though. I turned out to be a survivor and someone I can be proud of.
I get it, Deanne. For over 30 years my kidney failure was a road block from working on my underlying issues of inadequacy. In a perverse way, it provided safety. Yet, in my public persona, I was a success story - someone who was able to do and live well despite being on dialysis for a more than a dozen years, continuing to work full time, advocating for others with kidney failure and finally getting a kidney transplant that worked out so well with no side effects. Unfortunately, I had to find my rock bottom - the loss of my transplant and being so scared of going back on dialysis that I was on hospice care facing near death - before finding the courage of honest introspection.
And, you've put in a lot of hard work, self contemplation and growth to get to this point in your life. I'm sure it does feel like a good, safe place to be. However, there's one more plateau to reach, that of a THRIVER. Until conquering the fear of long term relationships, you'll never truly experience intimacy and happiness. That's when you'll be able to enjoy all that life has to offer. Have confidence in knowing that you have established a good foundation on how to put the worst that can happen into perspective. Then even if the relationship ends, knowing you are capable of putting yourself out there is quite empowering.
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Further proof of the credits I have given you all that you are true Warriors. The common person hasn't a clue how tough you are.
I vehemently disagree with you. That is a defeatist attitude. We are no more "warriors" than anyone else facing adversities in life. It allows for excuse making to just accept ones lot with no expectations to do better. Also, even the so called "common man" has trials and tribulations muddling through life. I could easily say I'd rather have kidney failure than being blind or a paraplegic, but it just isn't right to compare circumstances. Each of us lives life based on personal experiences, the ability to cope and the resolve to make the most out of our own situation.
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We are no more "warriors" than anyone else facing adversities in life.
Oh, thanks so much for posting this!
I have a son who is on the autistic spectrum, and when he was young and we were really struggling, so many moms with "neural normal" kids would tell me how brave I was. I so hated that that I really had to hold my tongue.
Just the other day I went to have my annual eye exam. I saw an optometrist I had not seen before, so once again I had to explain my meds and my medical history, and as I told her about my transplant and the drugs I take, she told me how brave (that word again) I was. I know a woman who is only in her 40s and is having to cut back on her work hours because her MS is worsening. She will never get better, only worse. I know so many people who have chronic problems of all sorts. We all have to be "warriors", but I can guarandamntee you that we all of us have our hours of despair, anger and fear. And if everyone could cope with what God gives us, there would be no suicide and no psychiatrists and no psychologists and no one prescribing anti-depressants. It is nearly impossible to be a tough "warrior" 24/7/365.
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And if everyone could cope with what God gives us, there would be no suicide and no psychiatrists and no psychologists and no one prescribing anti-depressants. It is nearly impossible to be a tough "warrior" 24/7/365.
I agree with all you have said except this. Psychiatrists, psychologists and anti-depressants are there to help some of us cope with life's ills. No different than a cripple relying on crutches or a wheelchair.
Reminds me of the joke:
A fellow was stuck on his rooftop in a flood. He was praying to G-d for help. Soon a man in a rowboat came by and the fellow shouted to the man on the roof, "Jump in, I can save you." The stranded fellow shouted back, "No, it's OK, I'm praying to G-d and he is going to save me." So the rowboat went on. Then a motorboat came by. "The fellow in the motorboat shouted, "Jump in, I can save you." To this the stranded man said, "No thanks, I'm praying to G-d and he is going to save me. I have faith." So the motorboat went on. Then a helicopter came by and the pilot shouted down, "Grab this rope and I will lift you to safety." To this the stranded man again replied, "No thanks, I'm praying to G-d and he is going to save me. I have faith." So the helicopter reluctantly flew away. Soon the water rose above the rooftop and the man drowned. He went to Heaven. He finally got his chance to discuss this whole situation with G-d, at which point he exclaimed, "I had faith in you but you didn't save me, you let me drown. I don't understand why!" To this G-d replied, "I sent you a rowboat and a motorboat and a helicopter, what more did you expect?"
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PatDowns, I agree with you. Perhaps it would have been better if I had said "If everyone could cope with what God gives us, there would be no suicides nor NEED for psychiatrists...".
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I am grateful that I don't have ALS, MS or any of the degenerative diseases where the only hope one has is for the degeneration to be slows. Us dialysis types have it easy compared to them.
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I am grateful that I don't have ALS, MS or any of the degenerative diseases where the only hope one has is for the degeneration to be slows. Us dialysis types have it easy compared to them.
This can be very true. My mother had MS. She got diagnosed at 44, and was dead by 49. It was a rarer form. Usually MS takes up to 20 years to completely incapacitate you. only a year after diagnosis, my mother was was almost a complete quadriplegic. Those f years were truly awful to watch and she suffered badly. She died 9 days before her 50th birthday, and two weeks before my 21st. She got sick a year after I got sick. You can imagine what my household was like those years.
I'm about to turn 43, and am thinking of her a lot.
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MS comes in 4 forms, some of which can mean minor disability for many years, and some which are much more tragic. All being said, I'd rather have dialysis than MS.
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But Pat dialysis is not the disease. It's a treatment. Kidney disease comes in many more shapes and forms and rarely merely involves just the kidney.
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But Pat dialysis is not the disease. It's a treatment. Kidney disease comes in many more shapes and forms and rarely merely involves just the kidney.
Cas - You have me confused. Please quote where I inferred that "dialysis" is a disease. Thanks - PatDowns
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Oops sorry Pat, you don't at all, I meant Simon. Forgive me, and don't be confused, I can only blame dialysis-brain-syndrom. So
But Simon, dialysis is not the disease. It's a treatment. Kidney disease comes in many more shapes and forms and rarely merely involves just the kidney.
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But Pat dialysis is not the disease. It's a treatment. Kidney disease comes in many more shapes and forms and rarely merely involves just the kidney.
Well said - thank you.
If this forum had a "reputation point" system, I would give you some. You'll have to settle for my thanks.
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Simon, I agree completely. Anytime someone tells me how sorry they are for my being on dialysis, I try to point out to them there are people with diagnoses for which there is no treatment or far more severe than dialysis.