Being put on Dialysis when you are young - some life hacks

I spoke recently to someone who was put on dialysis when he was sixteen years old. While he put on a brave front, I could tell he was hurting from within. I could relate. I was put on dialysis at 21. The problems of folks who're put on dialysis at a young age are very different from folks who get hooked when they are, say, on the other side of 50. This is not to say the elderly have it easy. Hardly so. But the diagnosed-young have a bunch of issues which others do not.

Education can be compromised. Young patients have to miss school or college. I could not do my Master's even though I had admission in a US university and a US visa in hand. Others can't finish their graduation or even school properly. This is something that will affect them lifelong. Scheduling dialysis to accommodate school or college timings is something that should be explored in order to be able to complete your education. It can be a big win psychologically.

Childhood and youth are times when most people have the most fun. Being reliant on a machine can be a major obstacle. Say, going out with friends, traveling to exotic destinations, dating, sports and so on. While being on a machine thrice a week can be an obstacle, there are things people can do to try and avoid missing out on at least some fun activities. 

Going out to restaurants may be possible if you pick your food orders carefully and plan ahead. Look up the menu on an app and see if you can pick foods that are not on the forbidden list. There are also many good holiday destinations which have dialysis centres. Going for dialysis while on a holiday may not be too much fun, but you can at least enjoy the rest of the time. Maybe ask for a late night slot? Dating can be a challenge but we are beginning to see more and more people accepting people with a chronic condition as a partner. I have no easy answers here, unfortunately. 

Sports is something that can definitely be picked up. Choose something you love and are willing to make an extra effort for. Start small. Gradually increase. Speak to your doctor about this and follow their advice. Strength training helps immensely not only in achieving goals in the sport you pick but also in performing day to day activities like climbing a flight of stairs, getting up or getting into a chair and so on. Begin some form of strength training either with or without a physiotherapist.

In India, marriage is considered a mandatory part of life. It is key in 'settling down'. If someone remains unmarried till about 30, whispers begin - 'what is wrong with them?' Thankfully for us, the answer is known. So the whispers say -'Poor thing, They are on dialysis.' Very rarely do you see folks on dialysis getting married. Despite pressure from my family and others, I steadfastly refused to consider marriage seriously. My life is already full of stuff. I didn't want additional things to deal with. And with the divorce rates going through the roof, I saw enough and more people unhappy in marriage. 

The thing we diagnosed-young have going for us is ironically enough, our age. The younger you are, the better your outcomes. A lot of the game is psychological. There are several people who live for decades on dialysis. Try to get the best quality of dialysis you can afford, follow the dialysis diet and try to be cheerful. Work. Exercise. All this can get you decades. Who knows, in a few years, medicine will advance to give us a solution where dialysis may become as simple as an implant or a wearable device.


Srinivasan Krishnan said…
Truly this is your 'Mann ki baath'.Your example is quoted by several nephrologists .As you rightly sid make the best use of what is available. Life has a lot to offer. I have experienced it in a different way. Keep up the good work.
Kamal D Shah said…
Thanks for your comment Dr. Krishnan!
Usha Balu. said…
Dearest Kamal ..I can relate with each and every word of your intense but true post. When I talk to young patients ...yes they put up a brave front but my heart weeps along with them. Recently one young patient ( just 13 years old ) told me I can't afford to cry ma'am because I feel guilty and wept. I felt like howling
And icing on cake for such youngones - when they don't have emotional support for some reason ...and such situations makes me so sad that I just keeping telling myself ..
Pl God don't do this ..helplessly. I met one young boy in 2012 who was with his sister & bro in law as his parents passed away. I was scared to ask ..are they treating you well 😭. As if he read my mind he saw me deeply and told me " as of now they are with me because I help them in their work ( tailoring shop). I met this boy
in my hospital but lost touch after 2015..Chennai floods. He changed the hospital.
Hence I will add ..when you are diagnosed young ...u MUST have emotional support of family. God bless !! ☺️❤️
Unknown said…
I m shivam and my younger brother Suraj is on dialysis due to acute on IgA nephropathy. I give my best to take care of him. Yes it hurts and when reading mortality rates on internet, it hurts. But seeing people like you is inspiration to everyone. It means that dialysis or ckd stage 5 does not surely mean that death is eventually the result but by getting best quality dialysis, and by giving everything to maintain recommended targets of blood pressure, calcium, Albumin, fluid intake, cleanliness, phosphorous, bicarbonate, haemoglobin, pth, thyroid profile, sodium level, and doing other thing one can live. I want my brother to live at least 60 yes age with quality life.
Ckd requires pro active approach and the patient and their family is also like their managing doctor too. And every health problem can be solved.
My brother was taking recommended epo inj but still his haemoglobin was lower than 8.5, this was increased to more than 10 after taking oral iron supplements before and just after HD and EPO. He was on more than 5 antihypertensive but still blood pressure continuously for months blood pressure was controlled and also medicine dose reduced to more than 50% . He supported from neurological disturbance, he could not talk, walk, eat he was nor independent, and he did not cooperated with dialysis removed permacath jugular cath femoral cath multiple times, fistula could not be made because he would not cooperate. So we had to keep him tied all day to protect lines. He remained like this for 1/2 a year, but he started after psychiatric dr. Started antidepressant and antipsychotic, and also AV graft was created. And it was nearly impossible dven in hospital setting to dialyse him with AV graft. So he also had one permacath in femoral which did not have enough flow. Once I missed anti depressant and anti antipsychotic for few days then I gave it just before inserting dialysis needle than surprisingly he let staff insert dialysis needle and created less problems. Then I started giving medicines just before dialysis only instead of BD. It protected AV graft, and he could live on dialysis. Ultimately he started improving well and then dialy medicines with reducing the planned dose was started. He is improving well and becoming more and more cooperative and friendly and getting his memories and personality back every day.
He was having infections again and again. We gave him ayurveda medicine to improve kidney function and it did not work but maybe it helped him having strong immune system he need oral antibiotics and his anti hbsag titre shot to 264 with only first dose of hep b vaccine. So maybe it worked but still not sure. But struggle do not end and I can say even it does not. It's not problem. I just want enough strength from God to get all work done to improve his quality and longevity of life. I was always in contact with his doctor. I did everything after consulting with him.
So it means that problems can be managed or solved but never let your head down but work and be happy. It's painful but seeing your loved one alive and smiling is best and it's worth it all you give.
Kidney disease is manageable if not recoverable.
No one should try anything I said above all by themselves without consulting nephrologist. I just mentioned them because I wanted to say that kidney patients can live if right work is done and God helps always.
Kamal D Shah said…
Shivam, Suraj is lucky to have you as his brother. All the best in whatever you do.
Orbiter said…
Your blog is so relatable and so true of the hidden pain of dialysis patients who put on a strong front. I was on dialysis from 2017 to 2019 when I got a transplant and that failed in 2.5 years. Now I'm back on dialysis and this time, it has been harder to stabilise. And while this disease in my late 30s and now 40s has affected my career mostly and put my family through hell, I can only imagine what it must mean to teenagers and youngsters. I only recently went through your blog and each one has been very helpful, factwise and feeling wise :) And I've discovered I should start planning holidays around dialysis centres once parameters are stable. Thanks for the happiness!
Kamal D Shah said…
Dear Orbiter, glad you found the blog useful. Yes, please plan a holiday. It makes a world of a difference.
Neeraj said…
Some of the current dialysis patients need not to postpone possibility of renal transplant. Of course ,outcome no one can predict but there is always a hope for individuals.