I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kitkatz on July 30, 2014, 08:29:48 PM
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There are new members and people who are just starting dialysis. Sharing experiences can be helpful to everyone.
What are your first memories of beginning dialysis?
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My husband started dialysis this past September doing in-center before we began Home Hemo in December. I'd go with him to the center and sit beside him during treatments. It really hit me hard that first day to see him being hooked up to a machine via a chest-cath. Needless to say, I cried watching him go thru all that. He was very brave, not even nervous. Well, I thought I was brave too, but turns out that I am not. I knew from that moment on, our lives were forever changed and well, literally just prior to that we had gone thru some other major depressing life-changing events. So, to next be hit by "dialysis" was like being hit by the bus. Two of them. After that, you just get thru each day with the hope that for as long as you can withstand it, you will at some point start to see that things may get a little easier.
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My first experience was at the hospital with a chest-cath. It seemed surreal. I couldn't quite believe what was happening to me. The first few treatments were absolutely awful for me. I would be so wiped out and have major headaches after the treatments. It was honestly terrible. I remember having to get 4 back to back day treatments in the hospital each for 4 hours. It was just a nightmare. After I left the hospital and started going to a nearby clinic, it was still awful. But after a while, I guess my body finally got "used" to the dialysis treatments. So yeah I've been on dialysis for almost 2 years now. And I guess you could day it's now just a way of life and it's something that I've just gotten used to now. Now days, the treatments aren't as bad as they were when I first started. I know it sounds terrible, but eventually I guess you do just get used to the routine of going to dialysis and getting your treatments every week.
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My wife had been hospitalized 3 times in 4 months and I felt I was losing her. The final hospitalization she was really out of it mentally for a week . She lay there in bed not connecting with me . I stay in the room each time she is hospitalized and cared for her there. It was very depressing and frustrating as the idiot doctors couldnt seem to agree on what was causing the problem. Her kidney labs werent yet as bad as most dialysis patients so they dint think it was that.
Finally after a week of getting nowhere I pushed and they agreed to start dialysis . She was brought down for a catheter , which I watched being put in.
Then immediatly after we went up to the dialysis unit and hooked her up. I admit I was fascinated by the machine and watched eveything and had a lot of questions for the tech.
Within 2 hours I had my wife back. It was an amazing transformation. She came out of her fog and began to talk with me and connect again. It was like a miracle.
So I never have hated dialysis . It brought back my wife.
We did in center for 2 months which we didnt like at all as we had no control, but then brought it home on Nxstage and have been doing that for just over 2 years now. She has a good fistula which required 2 surgeries to get to full size. She doesnt mind dialysis at all as she reads or uses her computer to write.
Yes its a lot of work, but worth it to keep her going. She gets off the machine and walks on the treadmill . Unlike in center dialysis , she feels better after nxstage dialysis . We do 5 days per week for 3.5 hours.
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My first memory was terrible. I went to the hospital for my normal appointment, the Neph doctor sent me down to the dialysis clinic. I assumed I was going down there to get an idea how dialysis is done. I had my catheter put in a couple of days before this and I got to the clinic and was told to sit in the chair, they started prepping me for dialysis right then and there. I started balling my eyes out, I was tottally not prepared to start at that moment. When the dialysis was finish, I could not walk, i was so exhausted and felt terrible. After a few treatments and after watching the techs, I learned very quickly that the reason I was feeling so bad was because they were pulling too much fluid off me. I finally got them to listen and they adjusted pulling so much fluid off me. After that, dialysis became easier, however, I did not like sitting in that chair. I convinced the Neph to change me from 4 hours to 3, still had problems sitting. Then I heard about PD and I have been on PD for about 2 years and I enjoy PD.
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I woke up from a coma to find I was on dialysis. They had been doing 24 hour dialysis with my central line but they wanted my permission to put in the permacath. I was pissed because I didn't want dialysis and my family knew that. Well, while they were waiting for my parents to get there to give permission, I must have been conscious sort of but I don't remember. I told them I was old enough to sign if I wanted to and they let me. So that story left me confused a little. I consented to the surgery the next day but spent that day really confused. Finally the following day I had a treatment that I remember. They brought the machine to ICU and the tech was very nice, explaining everything. After that treatment I stayed conscious but I was still very confused about a number of things that had happened during my illness.
The most surprising thing about dialysis for me was it wasn't as bad as I had dreaded. I couldn't really tell what symptoms were from dialysis and which were from my illness. I didn't mind sitting there that much because my illness had left me weak. To me though, it was very odd that they were pushing me to make a decision between HD and PD when I knew nothing of either and I was to weak to care.
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I remember being in the pediatric ward quite well, and talk of 'station 22' which meant nothing to me, but I knew that was where I was headed and that the slightly older girl in the room, the only other renal patient there, was going to get sent there first.
Station 22 was where the renal patients were sent for dialysis and to wait for a transplant. Dialysis was pretty brutal I'm sorry to say. I just couldn't tolerate it - I broke out in a horrible rash all over my body, suffered from splitting headaches and threw up during every run. I was not in the best condition before I started dialysis but in my memory I went from being somewhat functional, to being in constant pain for about 8 hours per dialysis day. I think I did 8 hours a day 3 days a week - but perhaps it just seemed that long back then. I weighed all of 14 kilos (pre-dialysis when I was massively fluid overloaded and couldn't wear shoes anymore because of it) so I guess it doesn't make sense that each run would be even close to that long.
No one explained anything to me, and it didn't occur to me to ask. I don't think I wanted to know anything because I would have seen curiosity about the procedure as flattering to the doctors whom I felt nothing but blind rage toward. I have no memory of learning the word 'dialysis' or 'kidney' and I would mix up the words 'fail' and 'flunk' so when someone would ask me why I was in hospital I would answer 'my kidneys flunked'.
34 years later I revisited dialysis. Headaches were still there, but I think it was because they (well, 'he', a single, inexcusably horrible nephrologist) tried to take off fluid that wasn't there. I had hemo through a cath and was the only alert patient there. With the exception of that one nephrologist, the staff was all lovely. I remember how much it hurt having the tape taken off the cath site and then having it sterilized. One tech saw how much pain I was in and said "This isn't working. Let's try another method." I didn't even have to ask. She switched the sterilizing agent and it made a world of difference. I try not to look back but when I do look back I keep those little moments close at all times.
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First dialysis was through a cath several hours after my chemo. They actually brought the machine to my room, which was good because I had major diharrea. They brought in a portable potty thing so I could use it while hooked up. I remember being so embarassed doing this (the tech had to stay with me the whole time).
And the headaches, man were they aweful. I was having bad headaches before hand, and the dialysis only made them worse. I threw up everytime, and honestly, it was a relief because while I was throwing up my head didn't hurt.
I am thankful I only had 5 days of this. On the morning of the 6 day I remember waking up clear headed and thinking, "Hrm, this must be what it feels like when your blood isn't full of toxins".
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Cariad, that sounds like something out of a bad movie. "Take this girl to Station 22!" Noooooooo......
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I had to start dialysis on an emergency basis because my creatinine went from 1.2 to 9 in the space of six weeks after being stable for the previous 10 years.
The weekend prior to January 25, 2011 was particularly horrible. I was so nauseous all weekend that I didn't eat and I was so fluid overloaded that I could hardly walk.
I called the nephrologist on Monday morning and told him how horrible I was feeling. He told me to meet him at the emergency room in the hospital at 9 AM the next day. I had my chest catheter placed on a Tuesday and I was in the hospital for two days while they did dialysis and found me a chair at the dialysis center closest to my house.
In center dialysis was brutal. I would leave work at 2:00 PM, get there at 2:30, get hooked up by 3:00 and be off the machine by 7 PM. It took me five minutes to drive home and then I would crash on the couch until the next day when I would have to get up again for work.
I despised everything about dialysis. The staff treated me like I was a particularly slow three year old, even though I was a 40 year old professional woman who spent her time at the clinic working on her laptop to keep up with her job duties. The clinic was a pit. The TVs barely worked and the wi-fi was nonexistent. The chairs were uncomfortable and I was always freezing cold.
After nine months of this BS, I had it. I was sinking into a depression and had to get out. No one ever told me about home hemo, PD or any other option than sitting in that damn clinic. I finally found this site and found out about home hemo with the NxStage machine. I was out of that clinic immediately and into another clinic that taught home hemo. I trained for five weeks and then did hemo at home five days a week for three hours each time on my own schedule until I got my transplant in April of 2013.
I'm sorry to sound like a downer for the newbies, but I firmly believe that dialysis stole two and a half years of my life from me. It was as if I was in a holding pattern somewhere just waiting to move forward. Nothing would have changed if I hadn't fought tooth and nail to get on the transplant list then switch to a different center with shorter wait times, and to get on home hemo. The biggest takeaway that I had is that no one will do this stuff for you. You have to be your own advocate and develop the ability to put your own needs first of anyone else's ego, especially clinic staff who can be very negative against anyone who tries to show them that things can and should be done in a better way.
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My transition to dialysis was relatively painless.
Background - I have lupus damage to my kidneys from the early 1990's. around 2007 I was in the hospital for high blood pressure that was kidney related and started to see a nephrologist. I heeded his advice, slowly, and got my fistula put in two years in advance and got listed for a transplant. The lab work was getting worse and worse and I was told dialysis would be soon and I'd know it when it was time. I also went to a training session about the dialysis options with my wife.
Thanksgiving eve I recieved my first transplant call well on vacation in Mexico and it was not a good match. The next weekend I had black stool and was told to go to the ER, well in the ER I threw up red blood. As soon as I was put on Protonix and blood transfusions I started feeling much better and started the waiting for tests and the rest of the usual waiting process that you get when insurance per approves you for a seven day stay.
So my nephrologist said we should start dialysis. I was in hospital on a lovely liquid only diet but alert. The hospital dialysis center took a lot of time to explain things without much prodding on my part. The used my well developed fistula and when I started crampping the gave me saline and discussed the cause.
The most negative part of the experance was the hospital refusing to discharge me before I had my chair assigned at the dialysis. After wasting a day in the hospital doing nothing, my wife started raising hell and got them to set up the chair that I planned to take (earier in the week my nephrologist and I agreeded which I would go to).
I left the hospital positive, thinking I can deal with this and I should not let it impact me and my wife too much. (She picks me up after each session.) I've been happy that I can still travel and do in center dialysis at destinations including; Singapore, Austin, Boise and Kansas City. I'm feel lucky that I have a desk job where I've worked for 15 years, that is willing to work with me on my schedule. I appreciate that I'm still peeing so I have time to trasition to a full renal diet, and I'm close to getting a transplant call that will work out.
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My first day of PD was on Labor Day, 2013. I'd been on this board for several years before that and knew what to expect, so i really took it in stride and couldn't understand why my family and friends were being so dramatic about it.
Typing that date seems unreal to me. I've experienced a lot in one year. One year ago right about now, I was just returning from a trip to Minnesota to tell my brother "goodbye." He was dying from cancer. A few days after I got back, my PD catheter was installed. Three days after that I had a colonoscopy as a requirement for transplant testing. PD training started two weeks later until my transplant on February 11 of this year. Six weeks after transplant, my dog had a fatal seizure. No wonder I feel a bit crazy!
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My husband and I knew dialysis was coming. We were not surprised. We had a few years to prepare ourselves. Once my husband hit a GFR of 15 we had the PD cath installed. After it healed we started training. Everyone was so very nice and helpful. We did manuals for a bit and are now on the cycler. The actual dialysis was not a big deal. What got me was all the "what ifs". I was terrified because I did not know what to expect. I am so thankful to IHD. I stayed up every night while my husband slept and read and read and read. This site is a tremendous source of knowledge and support.
Justin is doing well. We have a living donor waiting to be tested. We are just going through all the insurance red tape and trying to find the best transplant center.
To anyone who is reading this and about to start treatment I offer the following advice; Try and relax. It will not be as bad as you have made it in your head. You will feel better as the toxins clear your body. I think anyone would be scared dealing with dialysis (I was a wreck. Go read my introduction and you will see!) but you have to take it one day at a time.
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My first day of dialysis was not my best day ever. I had know idea about what I was getting into. Looking back the only thing I can't relate to this is starting kindergarten when I was 5. It was stepping into a whole new life, and I kind of liked my current life. So basically terrified I set out to start my new life. However I grabbed my reading glasses when I left the house. I promptly got lost on the way to the clinic. I kept making wrong turns it was a nightmare. Finally I arrived to the center and started this phase of my life. I discovered that while dialysis was not what I had planned for my old age, it was on the whole not so bad. I had spent several years trying to avoid dialysis. But I had a fistula installed two years before I started so I missed the catheter problems. This was the start of a new life adventure. I wish I had taken a tour of the center before starting, I would have saved myself a lot of wasted worry.
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Typing that date seems unreal to me. I've experienced a lot in one year. One year ago right about now, I was just returning from a trip to Minnesota to tell my brother "goodbye." He was dying from cancer. A few days after I got back, my PD catheter was installed. Three days after that I had a colonoscopy as a requirement for transplant testing. PD training started two weeks later until my transplant on February 11 of this year. Six weeks after transplant, my dog had a fatal seizure. No wonder I feel a bit crazy!
That was a whole year ago?? I can't believe all you've been through this past year. Congrats for surviving it all! :2thumbsup;