008.My Struggle As A Kidney Patient Part 1 Dialysis Dos and Don’ts

Kidney failure is hard to live with. Some cancers can be curable but there is no cure for kidney failure, unless you can get a new kidney. Dialysis is a permanent thing till you get a kidney transplant or die. It is a tough condition and sucks life out of you. There are lot of Dos and Don’ts for a kidney patient, and the life experience of a person with kidney disease and dialysis isn’t the best.

Rule no 1 for any kidney patient is to drink less and I am talking about water here! A higher fluid intake puts more pressure on the already failed kidneys and creates more health issues. So even if you are thirsty, you ain’t getting any water! Your doctor gives you the amount of fluid you can consume, and it includes everything – water, tea, coffee and even curry. Even fruits like watermelon, melon and oranges which have high water content need to be accounted in your water intake. Apart from fluid intake, a kidney patient is also given a long list of what not to eat. You have to avoid salt and reduce protein intake – vegetarian protein as well meat. Alcohol is a strict no, and one has to avoid sweets and fried/junk food. Basically, the what you can eat list gets over by line 10. Adhering to dietary restrictions is extremely important in kidney patients as you can see the effects immediately.

With all that medication and weakness from the illness, I used to have bad acidity and would throw up immediately after I ate. My appetite had greatly reduced, and I had no interest in eating so adjusting to the new dietary guidelines was easy for me except water. I craved for water all the time. I was taking as many as 38 tablets during this time. I was allowed one litre of fluid intake and most of my allowed water intake was being used to take those tablets. Later on, another patient told me you can powder these tablets and swallow at once and save your water for later. Best practices are shared in the dialysis centre too!

My dialysis schedule was for four hours every Tuesday and Thursday from 4 PM to 8 PM and on Saturday, I had it from 11 AM to 2 PM. I was happy with the morning schedule on Saturday as it kept my weekend evenings free. Not that I was socialising, but it made me feel good to have Saturday evening free and my next dialysis fell on Tuesday, so it felt like a long weekend. In addition to my dialysis, two physiotherapists started rehab for me. On dialysis days I had a morning session and on non-dialysis days I had an evening session with weekends off – all the more reason to wait for the weekend!

If you are wondering why dialysis? Kidneys filter the blood, removing harmful waste products and excess fluid and turning these into urine to be passed out of the body. When the kidney fails it can’t process these toxins and they have to be removed via dialysis. It helps you to remain alive for a few more years.

When you reach a dialysis centre, you are asked to weigh yourself which is compared with the weight recorded after the dialysis from the previous session. Depending on the increase in the weight, they decide how much fluid needs to be extracted from the body and accordingly the dialysis machine is set. Then comes the painful part of inserting needles and checking the blood flow. Once all the machine and needle work are done, you need to lie for four hours on your back. It sounds like a very easy procedure but it’s very uncomfortable. You cannot move during dialysis as those needles can come out. So, you get to lie down for four hours but with no movements, tossing or turning. Lying down like that, I would get a backache, my back used to sweat and be all scratchy.

Most of the dialysis patients get very impatient in last 30 minutes. They are just waiting for it to get over and to leave that room. I myself have bargained with the lab technicians to stop it 15 minutes earlier. Once it’s over, taking out those needles also hurts but I remember hearing many sighs of relief once they were removed. Sweet pain in its truest form! After the dialysis, you are weighed again, and the weight is recorded which is used as base for the next dialysis.

Dialysis is done to make the patients feel better, but I have not seen anyone feeling better once it was done. Many walk in into the dialysis centre but use a wheelchair to leave after the procedure. Most of us were grateful that it’s over with and we can go home. In fact, in the beginning, I used to be so exhausted after my session and would end up crying. At that time, after dialysis there used to be another task ahead of me which I despised – travelling back home.

Since I had major mobility issues, getting me to the dialysis centre was also a task. I had to be taken there in an ambulance and needed four people to carry and put me in it. The ambulance guy used to get a sheet with four hooks, called a shifter and the shifter was laid on my bed so they could drag me onto it. Then, they used to pick me up and put me on the wheelchair. From the wheelchair, I was picked up and put on the stretcher to be put in the ambulance. This process repeated itself when I had to go back home. I travelled like that almost for a month. It was an exhausting, and quite frankly, embarrassing experience. I didn’t fancy an ambulance being my mode of transport and in fact no one at home did either. So Mamata gave me my first task – if you don’t like it, get rid of it. The first medical accessory to go is the ambulance. Work on it!

Next week – I will talk about the emotional impact the new life had on me.