I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: F.A.Q. (Frequently Asked Questions) => Topic started by: PKDSTGV on August 13, 2011, 10:19:39 AM
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Hi everyone! Monday is my first day in the chair and I was wondering what to expect? I'm pretty nervous and scared, but information makes me feel better. Thanks!!! :flower;
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PKDSTGV Welcome to the site :welcomesign; Husband is on PD but there are lots of people on heamo will give you the low down.
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Go into the clinic early you will have to sign paperwork and may watch a video. Afterwards you will be escorted to a scale and your weight recorded. Next stop to your machine and chair. They will put a BP cuff on you and take a standing, then sitting blood pressure. After that they clean your arm and stick the needles in one at a time. Take a breath you can do it!!
Stuff to bring: headphones, laptop, blanket, airplane pillow, book, crossword puzzles, water bottle, cell phone, and anything else to keep you entertained.
Hang tough!
xo,
R
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great stuff rsudock :) I was thinking that mabie PKD....your still using the cath?? At least you wont have to start right off with the needles which sort of eases you into it. But!! you'll be so glad to be using your fistula? graft? soon as that cath becomes a hastle soon. OUr center was great and friendly which is such a pluss at this point.. I actually miss the techs and friends we made while there and i do hope your clinic is welcoming and helpful. Let us know how it goes :welcomesign;
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Thanks for the info and suggestions. I made a list and will look like I'm moving in when I get there tomorrow! lol I have a functioning fistula so it will be needles for me on the first day. They're starting with an 18 gauge and then moving up to the 15 gauge. I will be transitioning to home hemo with NxStage, but I have to sit the chair until my equipment comes in! I've been preparing myself as much as anyone can, for the past few months but it's so nice to know what to expect on the first day. Will I feel ill from the dialysis process? How tired will I be afterwards? I'm not driving myself because I want to see how I feel afterwards, but I'm hoping by the start of week two I'm able to manage getting there and back on my own. Will they numb my arm first? This whole needle thing stresses me out.......but I'm not going to be a baby about it, I know many people here are going thru it as well and everyone had their "first" time.
Just as a side note....I really want to cry, it's so sad knowing that I'm at this point already, it seems just like yesterday when I was diagnosed with PKD. I know I will be emotional tomorrow, I just hope I bounce back quickly and get my head straight so I can dialyze to live and not live to dialyze.
Thanks again all! Wish me luck!
Tami
Diagnosed PKD 1988- Age 21
Transplant List Mayo and Emory 2010
Upper Arm Fistula 2010
Dialysis Start August 15th, 2011
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Here's my story of my first day, in excruciating, sarcastic detail...
http://ihatedialysis.com/forum/index.php?topic=2004.msg27718#msg27718
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Cry, if it makes you feel better-don't fight it. Lord knows I've done a lot of it in the past. I have PKD too and I'm on hemo.
I hope tomorow goes well for you :cuddle;
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A week before I started D I had a meeting and met the staff, signed all the papers etc. at that meeting they gave me a scrip for Emla cream to numb my arm it really works. I hope you decide to do buttonholes. Mine were started the 4th week and I've been using them for 18 months. You will have to ask them to start them. I don't know why but very few units don't push them. If it weren't for this site I wouldn't know a thing about buttonholes.
On my first day I told them I wanted the best tech they had. The RN sat with me the entire time. Told me step by step what was going on and what the alarms etc ment. I started to get a head ache after about 1 1/2 hrs and they stopped pulling fluid.Dry weight is the tricky part. I have days that I'm wiped out and tired but not sick.
The most important thing is to be as educated as you can. Ask them a thousand questions! This is just my opinion but I think the more you know and the more questions you ask the better care you will get.
Good luck hope your first day goes smoothly.
Pam
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if your a bit freaked by the needlees, using a numbing agent about 90 minutes before d, as long as the needles go where you've put the cream, should'nt feel much :2thumbsup;
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Your in my prayers tonight and want to send you some peace and comfort with it all. It is a big step but soon, like others said, it'll become your new normal. We're nxStage users too(hubby the on on the D) and there's lots of info here on that too. Well, :cuddle; heres wishing you a great start tomorrow and come let us know. Im glad your having a driver to start. Some do great right off and some take time to adjust. Nice to see a familiar face anyway :) :grouphug; :pray; and :flower;
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I don't need a script for Emla cream. It's behind the counter, but I can still buy it. It's pricey, though. It's around $10 for the 5ml tube and the patches (only 2 patches in the box) and it's around $50 for the 30ml tube. I go through one 30ml tube every month and a half or so.
I like the patches. I think they're really neat. You just peel the back off them and stick them on, no messy fingers from spreading the cream around. If I ever have the money, I plan on buying 10-12 boxes of the patches, and leaving them at the unit. I think they'd be great for those who are just starting to use the fistula, and are only going to be using one needle.
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patches sound like a good idea!
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Awww :cuddle; I'm going to be in exactly your position in the not too distant future, so I really feel for you. I can understand entirely what you must be feeling. I'm wondering how well you are sleeping tonight. I've been crying for a long time now, so I can just imagine what it will feel like when that first day finally comes. You hear from people whose first day was just awful, where everything seemed to go wrong. And then you hear from others who discovered that the anticipation was much worse than the reality and that everything went without a hitch. It is such an enormous change in your life, and there's nothing that can truly and completely prepare you for it. All the information in the world will not give you a crystal ball in which you will be able to see how your body will cope. But knowing that you will be transitioning onto NxStage does give you so much control over your treatments, so if you can just hang onto that thought, than your time inclinic is temporary.
Please come back asap and report to us all how your day went. We all will be eager to hear that you're OK.
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I don't remember my first day on hemo, but then, I was so ill, I was lucky to have survived the infection that put me there in the first place. I hadn't dialyzed in 2 days, and up to that point, I had dialyzed every day for nearly 5 years. I know that my first hemo was on a Sunday, and it was the Sunday before Christmas, which was a Thursday. I don't remember anything between that Friday, when I had the central line put in and the PD cath taken out, and Christmas morning. My first treatment at my home unit was New Year's Eve. I slept through that treatment, but I think it was mostly because I had been transferred from the hospital in Halifax to the hospital in Charlottetown and made the trip by ambulance. It was a long, bumpy ride, and we didn't get into Charlottetown until after midnight, and I was in dialysis at 9am. I did get to open Christmas presents when I got home that afternoon, though.
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Wondering how that first session went???
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was just searhing for this thread and hoping we had heard something... Hopfully soon :)
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:welcomesign; it is not as bad as your mind thinks it will be. button hole is the way to go. i never used anything to numb my arm; best in my mind to just get used to the needle. all the best to you.
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Hi all! It's been a rough week, to say the least. I started anther thread about the experiece, but I wanted to update everyone here. You know, because I'm like the luckiest person in the world.....NOT.....my first day in the chair just went supper......(sarcasm). Actually, I was infiltrated right off the bat and the worst thing abou it was the tech didn't realize that it was infiltrated until it was bad. We pulled that needle and the RN came over....after some hesitation on her part, she got me cannulated and hooked up......the dialysis process was fine, they started me out at a rate of 200 with the goal of bring my weight down from 73.3 to 73.....and actually, in the end I dropped to 72.5 without any problems.
When I went home I applied ice to my arm, but it was pretty swollen and sore so on Tuesday I went by the Vascular Surgeons office to have them look at it (I was scheduled for a fistulagram today and wanted to make sure that was sstill a go). He said it was okay to proceed with the intervention and to switch to heat for the swelling. The heat worked so much better and on Wednesday, it was still swollen but not as painful.......and then they infiltrated me again! Twice! So I went home to my heating pad with dialyzing!
Today, I went to the Vascular Surgeons office for my fistulagram. The Angio Tech came to talk with me before my procedure and saw my arm (she was a dialysis tech for years prior to going to Angio tech). She said it was the worst infiltration she had ever seen! The doc came in to look at it and he was without words. He decided right then to rest the arm, place a catheter and do the fistulagram in a week and a half. He said he's surprised they had any problems because it's a great fistula......however he did add that sometimes with new ones, there are complications like this. He was calling the unit to talk with the staff so we'll see how that goes. I don't want to be an ass to people there, I'm a nurse and I understand, but I can't have them destroying this fistual either.
Now I'm home, worrying about the cath and the risk for infection....so I'll be paranoid for the next few weeks until the fistula is okay to use again. I don't want them to pull the cath until they've accessed the fistula succesfully at least three or four times. Anyway, that's my update......pretty sad, I know. I'm trying to keep my chin up, but it's hard!! Man this crap sucks!!
Tami
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OMG! :o your poor arm!
I don't know how you guys on hemo do it. I have been on dialysis twice and it was PD both times. I only had to do hemo for very short times and then I had the cath in my neck area.
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Oh dear Lord...that's awful. I just can't believe it! Yes yes yes.,..you need to do everything you can to keep them from destroying your fistula. Oh Tami, I am so very very sorry this has happened. It will eventually be resolved, but for now, it is well and truly sucky. I would be interested in knowing what your vascular surgeon is going to say to the staff. What is he going to tell them...go home and practice your cannulation skills on an orange? Actually, maybe that's exactly what he will say!
Keep us posted on this because I am really very interested on what the staff will do to protect your fistula. Now comes the obvious question...do you think you would consider learning to self cannulate?
Edited to add; OK, I've been thinking about this all evening, and I told my husband about it to illustrate that you can be well prepared for D and do all the stuff you need to do to stay healthy, but it can all so quickly go to hell in a handbasket because some tech can't do his/her job, and the next thing you know you've got a cath in your heart on your very first week of D, so what's the next 5 years gonna be like, blah blah blah. My husband is an attorney...NOT a trial attorney or anything litigious like that..., but he did wonder if what happened to you could be classified as "unreasonable" and negligent. Since your vascular surgeon was "without words" and plans to talk to the clinic, I have to wonder if you could sue for negligence. Now, I know that sound overreactive, but when you think about it, is it "reasonable" to expect the clinic staff to infiltrate you to the point where you are injured and your fistula is rendered useless? You are now at added risk for having to have a catheter. How can staff get away with this? And that's not a rhetorical question. How many "complications" are acceptable?
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I've seriously considered my options and that's been on the list. The problem is that I want to do home hemo with NxStage and they are the ONLY ones close to me that offer it! I can do home hemo with FMC, but the NxStage is portable and traveling is important to me. I had hoped my FMC clinic would get authorized to use NxStage, but half way through their process, FMC pulled the plug.
I don't want to piss them off and end up with worse problems, but at the same time, I can't afford for them to ruin this fistula!!! You're right though, I can't afford to be passive about this either. There are other DaVita's and I do believe that they offer NxStage as well, but they are 45 minutes away, without Atlanta traffic.
I'm beside myself over this and I'm scared......and in pain. I don't understand how this kind of thing can happen! My concern is that a lot of new fistula's are infiltrated so I'm not sure if these infiltrations are outside of the expected infiltration rate under the circumstances?
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I certainly understand wanting to keep your clinic cooperative since you want to do NxStage. You will need their support, so I can see why you wouldn't want to antagonize them.
I was about to write that I understand that a certain "infiltration rate" is to be expected, but then I stopped to consider, "Why?" Why do we "expect" to be infiltrated? Why this, "Well, sh*t happens!" attitude from both staff AND patient? But what caught my eye was the reaction from your vascular surgeon and his nurse. Both seem to be so very shocked by the state of your arm, and the fact that the surgeon is actually going to call the clinic makes me think that what happened to you is well beyond any reasonable expectation.
I think you might want to start looking for another clinic that offers NxStage. I know that there are Atlanta traffic problems, but if your fistula is destroyed, you won't be doing NxStage any time soon! If the only clinic you find is just too inaccessible, then so be it, but it might be worth it to start investigating.
What do you think the surgeon was calling the staff for? Really, I'm very curious about this. What he has to say to them will be hugely influential. If HE, in his considered professional opinion, thinks you have been unreasonably harmed, then you have a reason to litigate if that's what you want to do.
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He was trying, in a politically correct and polite way, to tell me that it was a "technique" problem.....his words. He asked if I had the most experienced person available sticking me and I told him the RN was sticking me and she said the only other person she could get to do it would be the Clinic Manager. He knew I was reluctant to point blame because I have to go back there tomorrow, but he was crystal clear that he felt it was the clinic's fault.....as did the Angio/Dialysis Tech. I think if I had been irate, he would have been all over that too. And I think he was calling the clinic to jump their ass (to be blunt). It's hard when you're a nurse because I know mistakes happen and I don't think it was malicious, but I do think that they aren't experienced. As a matter of fact, they are a new clinic and their numbers (as posted on here) were really pretty bad for morbidity......but there was only data from 2010 so if you take that into account, I don't think their outcomes were really as bad as the data showed.
I don't know.....all I know is that I'm scared to go back there tomorrow. I think I'm going to call the DaVita that's further away and see if they do home hemo (that's been another issue as well, lots of DaVita's with Nxstage, but limited number that do home hemo).
Thank you for your advice and concern. I really appreciate knowing that I'm not flying in the dark! I wish my husband was more educated about all of this and then he could raise hell and I wouldn't look like a troublemaker. I know that's kind of lame, but I've already dealt with so much crap, it would be nice to not have to always do it alone.
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When I first started dialysis (hemo for a short time) back in 1990. All of the dialysis techs at my clinic seemed very skilled. I figured they were all nurses.
Then when I had to start dialysis again (hemo before my 2nd transplant 2010) the dialysis techs all seemed as professional and knowledgeable as fast food workers. :blank: No offence to those who work in the fast food industry. I began to wonder if any of them even had a high school diploma. My how things have changed.
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Once you start on blunt needles, bring something in to pass the time.
When I first started training on CVC, i brought in my psp so the 4 hours wouldn't seem so long. They had tvs there, but i wound up playing games for most of the 4 hours. I also took a nap too (to try to acclimatize myself to the noise of the dialysis machine) PS : I had a bed during training, so that helped !
btw, when I first started sharp needles (for buttonhole development), my entire left bicep bruised, something like yours but way worse. I told people that I got the bruise from a UFC match :rofl; :rofl;
home hemo is the way to go; that is what I'm doing right now (the hospital called is nocturnal hemodialysis, i don't always do it at night though).
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PKDSTGV, of course it wasn't malicious, but it is still unacceptable. And of course "mistakes were made", but that doesn't reduce the severity of the harm done to you. My worst fear, and I think yours is too, is having that cath and getting an infection. All of that could have been avoided if the people sticking you had been more skilled.
It's a money problem as much as anything. Dialysis providers want to make money because they are profit-oriented like any other business, so what do they do? They do what they can to cut costs (no one in this country seems to want to invest in ANYTHING anymore; we seem to have lost sight of the difference between "spending" and "investing", but that's another rant), and labor is going to be one of the first things whose cost they cut. They don't want to spend the money to get the best people and to train them and then to pay them a good wage. That might be a fine way to do business if you own a lawn service but NOT if you run a dialysis clinic where people's lives are at stake.
I don't understand the problem with finding a Davita clinic with NxStage that lets you do home hemo. I thought the whole purpose of NxStage was to DO home hemo...are you saying that there are a lot of Davita clinics who have patients using NxStage inclinic? I'll be eager to know what you find out, so let us know, OK?
As for your husband, I don't think he needs to be educated about "all this" to raise holy hell. Anyone taking a look at your arm and hearing your story would thing, "I'm gonna go kill someone!" :rofl; The arm speaks for itself. And that's what husbands are for, to raise holy hell on your behalf. :2thumbsup;
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Hi PKDSTK and welcome to the wonderful world of dialysis. :cuddle; What you're going through sounds a lot like what I experienced when I first started D over a year ago. My first day I had a huge infiltration, but when the alarm kept going off they would just shut it off without really checking what was wrong because another patient was having an emergency, and I didn't know enough to say anything. I ended up with a chest catheter which kind of gave me the creeps because I was afraid it would get infected. It was a rather stressful two months, but once the catheter was removed my access functioned well with just a few minor post-treatment bleeds at first.
I guess the moral of the story is -- hang in there. Things will get better. Also, once your access is functioning, tell them to start buttonholes. The needles go in easier with less bleeding.
:cuddle;
It will get better!
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I made the decision yesterday morning to not go back to that unit. I just lost any trust I had in them and if I don't feel like they know what they're doing, then why put myself in any more jeopardy. I contacted my previous neph (she doesn't do dialysis) and we got me set up at a different unit, with a different company on Tuesday morning. I know the doc who runs that unit and I know Emory's reputation so while it's further to drive there, my piece of mind is worth it. Hopefully I will be able to start my home hemo training as soon as this arm is better and we can pull my cath. I just can't believe that I've started this process with so much drama! Couldn't the drama god's spread it out a little bit?
Thanks for all your posts, suggestions and support. I really appreciate it!
Tami
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Tami, several of our members go to Emory, one being noahvale. Here is a link to his thread about that clinic. Apologies to you, noahvale, for jumping in on this discussion. Maybe you can tell Tami a bit more.
http://ihatedialysis.com/forum/index.php?topic=19692.msg367390#msg367390
Good for you for changing clinics. I'm sure you hated having to do it, but I think you will be much happier. I am pretty confident that it will be worth the extra investment of your time up front so that in the long run, you will have access to the best treatment for you. Good luck, and tell us how it all goes. I'm very interested to know.
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I have a question. My nephro finally admitted that my Stage 5 diisease was going to result in dialysis or transplant. He's recommending I train for home dialysis, which I agree with. BUT...... how does a home dialysis patient know how to adjust things so I'm not sucking out too much water, electrolytes, or leaving in too much sodium, creatinine, etc? Is is better to start at a clinic where feedback would seem to me to be more readily available? Thata's my question.
I'm asking because I remember all the fooling around with blood tests I needed when I started on thyroid pills years ago and all the adjustment in dosing of insulin when pills no longer worked to control type 2 diabetes. I felt bad for long periods of time, and I'd prefer to avoid that if possible this time around.
Or do clinics keep you at least until private insurance is exhausted once you start with them?
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Hi all! It's been a rough week, to say the least. I started anther thread about the experiece, but I wanted to update everyone here. You know, because I'm like the luckiest person in the world.....NOT.....my first day in the chair just went supper......(sarcasm). Actually, I was infiltrated right off the bat and the worst thing abou it was the tech didn't realize that it was infiltrated until it was bad. We pulled that needle and the RN came over....after some hesitation on her part, she got me cannulated and hooked up......the dialysis process was fine, they started me out at a rate of 200 with the goal of bring my weight down from 73.3 to 73.....and actually, in the end I dropped to 72.5 without any problems.
When I went home I applied ice to my arm, but it was pretty swollen and sore so on Tuesday I went by the Vascular Surgeons office to have them look at it (I was scheduled for a fistulagram today and wanted to make sure that was sstill a go). He said it was okay to proceed with the intervention and to switch to heat for the swelling. The heat worked so much better and on Wednesday, it was still swollen but not as painful.......and then they infiltrated me again! Twice! So I went home to my heating pad with dialyzing!
Today, I went to the Vascular Surgeons office for my fistulagram. The Angio Tech came to talk with me before my procedure and saw my arm (she was a dialysis tech for years prior to going to Angio tech). She said it was the worst infiltration she had ever seen! The doc came in to look at it and he was without words. He decided right then to rest the arm, place a catheter and do the fistulagram in a week and a half. He said he's surprised they had any problems because it's a great fistula......however he did add that sometimes with new ones, there are complications like this. He was calling the unit to talk with the staff so we'll see how that goes. I don't want to be an ass to people there, I'm a nurse and I understand, but I can't have them destroying this fistual either.
Now I'm home, worrying about the cath and the risk for infection....so I'll be paranoid for the next few weeks until the fistula is okay to use again. I don't want them to pull the cath until they've accessed the fistula succesfully at least three or four times. Anyway, that's my update......pretty sad, I know. I'm trying to keep my chin up, but it's hard!! Man this crap sucks!!
Tami
Sorry to hear about the experience. But unfotunately, this is far to commoon ffor those starting dialysis for the first time.
Tip#1... If you are new to dialysis and this is your first few treatments... DO NOT LET A TECH INSERT YOUR NEEDLES....
Insist upon a trained RN that has experience.
This is the last thing you need done to your fistula. Your fistula is very fragile when first using it. I hear of this happening all too much.
You have the right to deny a particular person put your needles in despite what they may tell you.
Have you thought about sticking yourself? I know it sounds harsh and stressful, but once you do it, you will feel the freedom and not let anyone else touch it.
The brusing will go away. Why did they decide you needed a fistulagram? Anytime you are infiltrated, your arm is more than likely going to look like that. It will take a few days to heal. Are they starting you out with 17guage needles? Also, make sure they run you at a lower blood fllow for a while until your fistula gets used to higher pressures.
Also, I would look into getting buttonholes. This is where you use the same two spots over with dull needles. Needles slip right in. They may say that they dont use them, but if you learn to stick yourself, again, this is your right to learn to stick yourself.
One thing I suggest is to learn as much as you can about dialysis and the machine. Pay attention to how they set it up and program it. Read your chart on a regular basis. Make sure they wirte in your chart that they infiltrated you.
Learn what your labwork means and what the normal ranges of your blood tests are. And by all means...do not be afraid to question your medical team including nurses/techs and even your nephrologist. You should all be working together as a team. Do not accept that your blood results are "ok" or "good". Ask for a copy of them and learn what they are and how each result affects you.
Have they ever informed you about Home Dialysis?
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Malaka, when my husband was first diagnosed, we chose PD to start with. Home hemo was not available at that time. That being said, I now wish home hemo had been available because we do it now at home with nxstage and it is so worth it.
Now it is my understanding, if you are going for a transplant, then PD is a much easier type dialysis. They say it is much easier on the body than hemo, but honestly, it requires so much sterile conditioning that the slightest slip up, well you got an infection! It worked for us 5 years and we were greatful for that, but hemo at home on NxStage just worked for us.
Going in-center to learn more about it is just not going to fly, IMO. If we had gone in-center when he had to have D. he probably wouldnt be alive! Im sorry folks, but that 1 year after PD failed for him and he went in-center, was just awful! And if I were in Novel mood, I could list a lot of reasons why we hated it, but for now, just learn to do it at home!
Do you have a partner, malaka? That will be extremely important for backups. Most clinis that train this stuff will prefer that you have another person to learn with you.
Look, the worst that could happen is that you cant learn it, and they send you In-center anyway. Try it, what have you got to lose?
PK, smart move on your part! Once that fistula matures and grows, you are going to be glad you went that route!!!! I understand the fear of infections w/ cath, but just be mindful of what u are doing, and u should be fine.
Tami
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Have they ever informed you about Home Dialysis?
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It would be so worth it if you did D at home, IMO.
lmunchkin :kickstart;
:flower;
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Thanks. Since I'm using insulin to control Type 2 diabetes, I'm not needle phobic. But I was concerned about inability to recognize signs of trouble doing it at home. That sort of happened to me when my sugar went out of control thanks to steroids. I was sick and didn't realize it, and ended up in the hospital for several boring days.
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Well, I've been trudging along with my in-center hemo. I'm so glad I switched to the place I'm at now, but I have been having lots of problems with low blood pressure. They switched me to an F160 dialyzer, are giving me 500cc bolus of normal saline before I start, I'm off all b/p meds during the week (and hypertensive as hell!) and we're not doing ultrafiltration. Yesterday I started having edema in my feet and ankles, first time for that, so we're gonna have to do something different, but what no one seems to know right now.
I was cleared yesterday to start accessing my fistula again.....single needle to start then work my way up to 15 gauge over the next two weeks. I'm hoping that with the route change some of my problems will go away.....probably wishful thinking, but I've gotta keep my chin up some how! On a positive note, accessing the fistula means I get this catheter out in a couple of weeks. It will be such a relief to have it gone.
I'm approaching the one year anniversary of my mom's death so the days are getting more and more depressing. I know everyone that has lost someone has had to meet this mile marker themselves, but damn it's tough! She hated dialysis so much and I didn't know enough then to ask her the right questions. I regret that....as a nurse and a daughter....maybe I could have made things better for her if I knew what was going on. I'll never know, I guess, but I'm comforted in the fact that she no longer has to go through it and that she's happy at my dad's side.
I hope everyone has a great week.
Take care!
Tami
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My mother died a little over a year ago, and I find that as time has slipped by, her death has become harder for me. At the time she died, there was just so much going on; she had suffered so much, and it was a blessing that she was finally at peace. But now, a year later, it feels like the trauma has just now hit me. I think about her all the time, and I feel such a profound loneliness that it hurts to post about it.
My mom was on dialysis for the last five years of her life. She had had abdominal surgery, and in the process, she lost her renal function. So, I saw the ugly side of dialysis, and I saw her struggles. So, I can understand how you must be feeling, and I am so sorry.
I am not on dialysis yet (but on my way!), so maybe I am talking out of turn, but my own treatment for pre-dialysis problems took a good while to streamline, and it strikes me that perhaps dialysis may be the same. I have always been told that the first few months on dialysis are the hardest, and I think you are finding out why. This is where medicine becomes art. Each body is unique, and it will take some time and effort and thought and experimentation to find what works best for your body. You are obviously an intelligent patient, and I am certain that your new center will listen to you and to your concerns, and together you will all finally discover the key to your unique "lock".
That's great news about your fistula. Having the catheter just adds to your woes, I imagine. Be sure to post how things are going once you actually start using the fistula again. I wish you all the luck in the world.
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You have certainly had a rough road so far.
I had a cath for exactly one year.(They removed it 1 year to the day it was put in.) I never had a problem with it.
I now have a fistula that they are starting to buttonhole.
I am glad to hear that you decided to go to another clinic. I live out in the country so the closest one to me is about 20 minutes away. I would not go to that one because I HATE the hospital that is near it. My husband & I had a bad experience there and will never let them take either one of us there. So I was going to one about 30 minutes south. I liked the people at the clinic but I did have 2 problems just before I decided to go somewhere else. The first was when a tech spilled bleach (at least she said it was bleach) on me and it ate my clothes! I had holes in my shirt & pants by the time I got home!! I took photos and called the "hotline" set up for complaints. Then the visiting dr. & I got into a disagreement over my treatment. I now go to a clinic about 30 minutes east of me and am much happier. There have been a few problems but they are open to discussion and don't usually take it "personally".
Stick to your guns and don't ever just accept things just because accidents happen. If you don't like something or you feel uneasy about something, speak up!
Good luck. I hate it when people say this but: It Will Get Easier!
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MOLLE and Maxpedition are cool, so are berets, BDUs and open carry but sometimes less is more. For example: "the less people notice you the more chance you have of making a successful get away"
Go with plain everyday hiking day packs from a cheap outlet. Buy two and replace the first when it starts to show wear and tear.