please help me im scared

[gothiclovemonkey]

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.

[jeannea]

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. 

[cdwbrooklyn]

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.   

[obsidianom]

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.

[kitkatz]

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.

[gothiclovemonkey]

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*

[iketchum]

 Do you have a primary care doctor?I found the neph sometimes wont treat you for something not kidney or dialysis related.

[gothiclovemonkey]

yes i do, and hes working on my non dialysis stuff, but my neph isnt doing HIS job either!

[willowtreewren]

First of all.....

 

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.

 

[Simon Dog]

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?

[gothiclovemonkey]

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...

[obsidianom]

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.

[natnnnat]

  I'm so sorry you had such a shit time gothic.

[BattleScars]

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.   

[obsidianom]

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.

[BattleScars]

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.

[jeannea]

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.

[gothiclovemonkey]

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

[Deanne]

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  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.

[MaryJoe]

GLM - I am so sorry you are having all these problems and all of the pain, stress and worry they are causing.   

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!   

 

[gothiclovemonkey]

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??

[obsidianom]

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

[lola]

  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 

[Hazmat35]

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! 

[jeannea]

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.