Kamal Shah has a wonderful way with words that I got hooked on reading his blog! I am so glad I did as it really opened my eyes as to the problems and hurdles some people have to go through when on dialysis. Here are some excerpt from some of his posts regarding his kidney disease. I think people will soon see that even being on dialysis can have its problems especially so when a transplant may not be a possibility. The rest of his blog also makes quite interesting reading.
- ~~ taken from “I will At Least Know if there is a Ray of Hope” ~~
My native kidney disease is Atypical Hemolytic Uremic Syndrome (aHUS). My first transplant – my mother was the donor – did not work out because they suspect aHUS recurred in the transplanted kidney. Subsequent examination of the slides of a biopsy of the transplanted kidney revealed that it could have been cyclosporin toxicity too…..
- ~~ taken from “Low Level Vitamin D” ~~
But what worries me is the larger picture. How long has this level been low? I noticed something wrong when my bones started to pain. I wonder what other damage this has caused.
- ~~ taken from “Lidocaine – to use or not” ~~
For the past few weeks, however, despite using buttonhole needles, cannulation had become painful. I dreaded the whole process. Even the venous sites, which were generally really trouble-free for months, started paining. And it was not the angle that was wrong. I was cannulating myself everyday, so I couldn’t get the angle wrong…..
- ~~ taken from “If only someone else could worry on my behalf” ~~
Like I said a few weeks back, if it was only the dialysis I had to deal with, it would be really all right. Its the whole set of side effects that puts me off. At one point, it just becomes too much to deal with…..
- ~~ taken from “The clock starts ticking” ~~
For the last three and half years, Jayaram, a dialysis tech has been coming home every night around 10 to help me start my dialysis treatment. Once the session starts, he sleeps in the same room on a mattress. If there is any problem, he wakes up and takes care of it…..
- ~~ taken from “Arterial buttonhole” ~~
I have been using two pairs of buttonhole sites for the last couple of months. The venous sites are always well-behaved. Not much pain. The tracts are well formed. The needle goes in smoothly. The arterial fellows are usually badly behaved. They give me trouble every night. Almost…..
- ~~ taken from “State of the Fistula” ~~
I was visited by a team from Fresenius recently. They are planning to start home hemo training in India and wanted to see my setup. When they came, we discussed my treatment and they saw my fistula. They were quite alarmed. They said I should have it checked right away. They thought it was very risky to have such a huge fistula and it could rupture and lead to an emergency situation where there could be uncontrolled bleeding….
- ~~ taken from “A really scary incident” ~~
(during home dialysis….)
I shouted out to my mother and asked her to call the tech and put the phone to my ear. I got him on the line and explained the situation. By then the blood in the tube had become quite dark and was almost black. He asked me to check if the clamps on the tube and the needles were open. That was it. The venous clamp was closed on the tube at the point of connecting to the needles. I opened it immediately.
- ~~ taken from “The roller coaster ride of life with CKD” ~~
Even with daily nocturnal dialysis, these side effects of kidney disease can be quite overwhelming. Its almost as if God (or whatever) says, “Ok, now you’ve had enough of peace for a while. Take this, and this and this. Now, let’s see how you handle this!”
- ~~ taken from “The toll dialysis takes” ~~
The problem with kidney disease is not only kidney disease. Its a host of other things that you have to deal with. Every part of your body gets affected in some way or the other. I have had problems with my lungs, heart, liver, spleen, nerves and bones as a result of my kidney disease. And I have never been able to get over my obsession with fluids ever since I had to quit PD. Its purely psychological.
One Response to “Kamal Shah”
Leave a Reply
this site going
this site going