I have been living with kidney failure since 2000 and have been on haemodialysis since last 7.5 years. Here is my experience and perspective on various facets of life with dialysis
Schedule – I have to go to the hospital thrice a week and be there for about 5 hours every time. I never skip a session, though I have adjusted the days at times (that means instead of Mon, Wed, Sat schedule for Mon, Wed, Fri) keeping the frequency of thrice a week, unchanged. First few years when I started dialysis, I did not have fixed slot at the center and had to go at odd timings like 10 pm to 3 am. By the end of year one, I managed to get the morning slot, since then I have been using the morning slot of 8 am to 1 pm. This is better since after dialysis I can go home, have a timely lunch, take some rest and have a free evening time.
Daily experience – At dialysis there are a few moments of pain when they insert two 16 gauge needles (about 1.7 mm thick) in the arm. After that there is’nt any pain. Sometimes when I have consumed too much fluid, dialysis could be troublesome. There will be low blood pressure, cramps which can be painful. I get cramps, particularly on Saturdays, when there is a two day gap (Thu and Fri) during which more fluid accumulates in the body. After dialysis I feel somewhat exhausted, but I feel good after I take a few hours of rest. On non-dialysis days I feel more or less normal. In the first few years I felt very low on energy, but not now. After so many years, I think I have got used to the new norm.
Diet – A dialysis patient diet is a complex design challenge. One has to control phosphorous, sodium, potassium and water intake. It is also necessary to get a high protein diet. This is hard, all good sources of protein would also be high in phosphorous and potassium. In first few years when I followed the dietitian recommendations very meticulously I ended up having very low protein levels. Now I have started taking a protein powder specially created for dialysis patients. I also rely on chicken and eggs to get the protein. That causes my potassium to be out of limits most of the time. I take a phosphorous binder tablet to control the phosphorous levels. Controlling water consumption is very important. My kidneys do not produce any urine. So my doctors have asked me not to drink more than 750 ml of water in a day. That is very hard. I feel thirsty all the time. I drink chilled water so that the thirst is quenched with lesser water. Here again I am not able to stay within the limits, I end up drinking about 1 litre of water every day. Which is why sometimes i have a hard time on Saturday dialysis sessions.
Work life – I am lucky to be in a organization/sector where it is possible to work from home and the work is not physically challenging. Many of my fellow patients have had to leave their jobs or go part time. I am able to do my job full time, but perhaps not at full capability. Lower energy levels surely have some impact on both physical and cognitive abilities and hence performance at work.
Family life – In the first few years, I was very weak and had frequent infections at dialysis. Hence my wife or my father had to accompany me to the hospital. That takes up a lot of their time as well. Later my health stabilized and I started going alone. Most of the household chores have to be handled by my wife, because I wouldn’t have the time/energy to do them. My son would be disappointed because I would not play cricket or table tennis with him.
Physical activity – I cannot do very strenuous physical work or exercise. I manage to walk regularly, on an average 5 km per day. That is the only exercise I get. Long term kidney failure also causes osteoporosis. I have very weak bones and a few fractured vertebrae. Due to that I avoid most other physical activity.
Travel – Though daily commutes are not a problem, long distance travel is a constraint. I can at best travel for 2 days between two dialysis sessions. Other way is travel to places where there are dialysis centers and they are willing to arrange a slot for you. I had made one such tour of 15 days, when I visited Uttarakhand and Delhi. I could find dialysis centers at Delhi and Dehradun. However, I feel frequently changing dialysis centers is not a good idea.
Finances – This is an expensive treatment. If one does not have the money to spend or an insurance that covers the expense, it will severely affect the finances. And there are other problems such as infections, fluid accumulation in lungs etc. which requires one to get hospitalized. I have expenses of about Rs. 60,000 per month only for dialysis, thank fully covered by my insurance plan.
Related Health problems – Long term dialysis causes some other health issues too. One that I have experienced is weak bones and resulting fractures. I have been living with the support of braces due to many fractured vertebrae. I am on some medications to improve bone density. Hopefully they will work. One of the known effects of long term dialysis is heart failure. I get the 2D Echo test done every year. As of now my heart seems to be doing fine.
To summarize, I would say after the first one or two years one gets adapted to the dialysis routine. One should pay attention to his body and how he feels, gather knowledge about the ailment and eventually he should be able to find the conditions that work well for him.