Some people say they can live normal life on dialysis. I couldn’t. Almost from the beginning I was suffering a lot mostly from head aches and muscle cramps. I was always convinced that I would rather die than having to go through this ever again. But to start from the beginning…
Before the fistula was ready to use, all my dialysis were being processed via the line in my neck artery. It didn’t hurt, just the disinfection process they had to do before each dialysis was not very pleasant. They just connected the line with the machine and I had to wait until the machine cleaned my blood from all toxic wastes and water. 4 hours process 3 times a week.
You can either sit in a chair or lie in a bed. Mostly people sleep, read, watch TV or talk. At the beginning I was sleeping but after few sessions I started to feel the side effects of the dialysis. At first I just had head aches, nothing special. Then also muscle cramps, mostly in legs, which was a lot worse. Sometimes I had such strong cramps in the whole legs that the doctors were afraid it could actually break my bones. They were giving me lots of magnesium and calcium but it was not much helpful.
When you are on dialysis you have to significantly lower your daily liquids income. This includes not only drinks and soups but also fruits, vegetables and in fact you have to watch the percentage of liquids in anything you eat. There is liquid even in bread.
The doctors count you your “dry weight“, which is the amount of body mass (weight) without extra fluid (water). Basically it means that it is the weight that you should have after the dialysis. The more liquids you drink between two dialysis sessions, the more weight you gain and the more must be reduced by the dialysis. The more reduction is being done during the dialysis, the worse side effects it may have.
So I was trying not to drink much (if I remember correctly I was allowed about 500 ml per day) to avoid the terrible side effects. It was not always that bad but I had only few dialysis sessions without any complication.
As I had these bad reactions on dialysis I always had to have someone to either take me there and back or at least to go with me. When I was in České Budějovice, where my parents and most of my relatives live, they always took me there by car and then took me back again. When I was in Prague, my boyfriend always went with me and came for me at the end and we had to go by bus as we didn’t have car at that time.
The whole schedule of both of us was totally subordinated to my dialysis times. I must say that still today I am very grateful to everyone who actually spent that time and effort and helped me to survive this terrible, painful and depressive period.
Yes, depressive. A lot. During the dialysis sessions I was more than ever in my life realizing how dependent my life was on machines, electricity, medicine, people around me… Pretty often happened that I had those almost unbearable painful cramps, then after the dialysis I could barely walk, had head aches, sometimes even puked and was depressed. So someone just took me home to bed and I slept for few hours.
Ok, now how much pain can your stand? Always a bit more than you think. When in about 8 weeks the fistula was ready to use, the doctors decided it was time to start using needles. Well, this, was NEEDLE. If you don’t mind watching medical pictures, you can take a look here (don’t say I didn’t warn you). If you don’t, just imagine about 5 times wider needle than is the normal one for taking blood.
When I first saw it I couldn’t believe they actually wanted to use that on me. In the past I almost every time collapsed when had to give blood for tests, couldn’t watch it or even think about it. Now I saw this. Well, when they did it for the first time it really hurt. Like hell. And they had to insert two of them, one for the dirty blood to go away and the second one for the cleaned blood to come back to the body. I must admit I cried. And the worst moment was when I realized that this is not the last time. They would do it three times a week…two needles…no one knew for how long…
Fortunately after some time it didn’t hurt that much. Or I got used to it who knows. But on each single place where the needle was inserted into my hand stayed a little scar. Very little one. But many little scars on a small place create one big scar. Sometimes people ask me what happened that I have such scar on my hand. When I explain, they are either shocked or don’t really understand.
Anyway, at about this time I had to decide whether to continue studying or postpone the current semester. Oh well, it wouldn’t be me if I didn’t jump into it headfirst. Especially some exams were pretty challenge but in the end I managed to finish all required exams and started to enjoy well deserved summer.
At about end of September the doctors finally told me that I recovered enough from the first operation and that they could put me to the official waiting list (list of people who need transplanted kidney). Moreover, as I had the first transplanted kidney from the living donor (mom) together with the serious problems I had when the first kidney died and my problems on dialysis, I was put on priority waiting list.
Being put on a waiting list actually means that the transplantation coordinator can call you 24/7 that they have a kidney from deceased donor which matches your medical profile. They will always ask you if you want to accept it. If you do, you must be able to get to the hospital within some short time, otherwise the kidney couldn’t be used anymore and they would offer it to someone else on the list.
So I was going everywhere with my cell, making sure it was charged and had signal. On November 1st, 2005, when I was in the middle of dialysis, I had a phone call. The coordinator from IKEM called me that they had suitable kidney for me and if I wanted it. OF COURSE! So the nurses ended the dialysis, my boyfriend picked me up and we went directly to the hospital…