Sejal Jobanputra, who has been living with Chronic Kidney Disease reviews the book Silver Lining by Kamal Shah and explains why she thinks it is a useful resource for a person with Chronic Kidney Disease and their family.
Silver Lining is an autobiography of Kamal Shah, who has been on Dialysis since the age of 21. He shares about his journey with chronic kidney failure, aHus and his undying spirit to make life easier for people on dialysis, which led to the formation NephroPlus.
He has been through all the pain that comes along with a chronic disease. But instead of the disease ruling his life, he takes charge of his life and body to find a path that suits him best. From 4 hours dialysis, 3 times a week, at various hospitals, to a failed transplant, he researches on PD, peritoneal dialysis. PD was a new concept then and very few people knew about it in India. He shares about his phase on PD, almost a dream run till his catheter was badly infected during a tsunami. I have spent months thinking about PD for myself but somehow the fear of infection discourages me. Hemodialysis (HD) is like a known devil to me. Been on HD for 18 years now. PD is an unknown territory that I fear to try.
Reading about his journey makes any person going through dialysis relate to his stubborn idea of having a normal life and later giving up and letting Dialysis take over. What Kamal does is not give up but find ways to have a normal life. His doctors suggest nocturnal dialysis - 8 hour dialysis session every night. With no dialysis centres offering this, he chose to set up a machine at home with the help of a tech. He planned that well. Starting with 2 hours daily and gradually increasing time to finally 8 hours of dialysis 6 times a week. This slow and long dialysis is a boon. It does not put pressure on the heart. It also allows him to eat and drink almost everything and have a normal life. He travels, goes on a cruise with dialysis facilities, swims, plays sports.
He doesn't tell us that nocturnal dialysis is the only solution. In fact he reiterates that the 4 hours of 3 sessions a week is enough for a normal life, if discipline and quality of dialysis is maintained. And that is what he encourages.
The story about NephroPlus is well known. It is covered in the second part of the book.
For me on a personal note, it has been an amazing read. Not only did I realize that Kamal is a lovely man but also very honest and open about sharing and guiding about dialysis with just every one who needs guidance. Some things I never knew about though being on Dialysis for years is about ending Dialysis using air against using saline. Risk of air bubbles entering the blood can lead to so many complications. Also about the risk of cross infections being too high at most centers and how it can affect us. Oh, I almost forgot about him visiting quacks for cure for #CKD. I've done it too.
The bottom line is he gives a lot of realistic hope through his example of living a life to it's best. Finding the best for himself and then making sure his centers under NephroPlus offer the same standards to the guest.
I'm going to read the book again. There is a lot more to learn.
