|Treatment Type||Nocturnal Home Hemodialysis|
|Kids||No / Not at Home|
Kamal's Amazing Journey to nocturnal Home Hemodialysis (HD)
Kamal Shah's kidney failure was a two in a million chance. In 1997, he had earned a Chemical Engineering degree, and needed vaccines for a Master's degree program in the US. But, the vaccines led to atypical hemolytic uremic syndrome (aHUS). Due to a rare gene mutation, Kamal's blood broke into tiny bits that clogged his kidneys. This problem only happens to one in 500,000 people.
In 1998, Kamal's mother gave him a kidney. When the HUS came back, the transplant had to be removed. Kamal did in-center HD for 6 months. Then, he switched to PD, and for 6 years, it worked well. "The best part about PD for me was that there were much fewer diet and fluid limits," he says. "I hated this about in-center HD. When I switched to PD, I hardly restricted my fluid intake and what I ate. This was a huge change from standard HD."
PD had few downsides for Kamal. "The care you need to take during an exchange—washing hands well, using sterile techniques—was all a little hard to do, especially at work. During the day, I had to stop what I was doing and do my exchange. The morning and night exchanges were not a problem. But, the two daytime exchanges were a bit of a challenge. Of course, I got back to work thanks only to PD so I can't complain about this too much!"
Another Rare Event
In December, 2004, while Kamal was on holiday with friends, an earthquake shook the Indian Ocean. "A Tsunami struck the resort we were at," he reports. "Water gushed into my room at a dramatic pace and in a minute, we were neck deep in water. We somehow managed to hold on to dear life and made our way to higher ground."
Kamal's PD catheter became infected and could not be saved. He began HD again in a center. But, then a bit of luck came Kamal's way. His doctor suggested that he get an HD machine at home and do his treatments each night for 7-8 hours. The long, gentle treatments could improve his quality of life, the doctor said.
"I thought this through completely," he recalls. "I thought about the pros and cons. I had to rely a lot on the posts in mailing lists and forums on the Internet, especially Home Dialysis Central. It was clear that nocturnal HD - 7-8 hours each night, 6 to 7 nights a week, had the best outcomes in terms of well-being, longevity, and reducing the side effects of kidney disease, like heart problems, etc. I decided to go for it."
Getting Started with nocturnal HD
Kamal had the machine installed at his house and switched to daily nocturnal home HD - the gold standard in HD today. "The best part about home HD is again, the freedom from diet and fluid limits. I like that I can dialyze when I want to. Sometimes, when I am too tired and in no mood for two thick needles in my arms (and if I haven't put on too much fluid weight), I can skip a session. This is not possible with in-center HD. I also like the fact that 7 hours each night gives me very good dialysis. My LVH (left ventricular hypertrophy) is much better. My anemia is almost gone. My restless legs syndrome has gone away. And, I may have prevented many other problems!"
Being in India presents some unique challenges for home HD, notes Kamal. "The main one is the complete lack of any home HD program in India. This makes me fend for myself. I order my supplies. Should something go wrong with my machine, I call the techs and pay for the repairs. I need to take care of my RO (water treatment) plant and make sure regular maintenance is done.
"I had a tech to come and help with my treatments," He adds. "I slowly started learning things myself as well. But I did not push myself too hard because I had the tech. Cannulation was something I picked up first. I learnt this when I was in-center (very novel in India – no one does this!) and have been cannulating myself from Day 1 of home HD. I learnt the rest of the stuff over many months."
Even with its challenges, Kamal finds nocturnal home HD worth it. "I do find the chance of something going wrong during a treatment quite scary," he admits. "I've had a couple of blood leaks in the past that left me quite shaken up! I would never give up this treatment due to this though. I firmly believe that if it was not for daily nocturnal home HD, I would not be alive today!"
"I believe it's good to have a medically trained helper in countries like mine where there is no home HD program, no formal training, and no support," Kamal adds. "If those elements are there, I do not believe a helper is always needed. There was a time when I had learnt to do the whole treatment myself. I would start before the tech arrived and close by myself in the morning. But, after the blood leaks, my parents (who were going on a long trip to the US) made me promise never to start HD when the tech wasn't around."
Having a home dialysis machine in the home bothers some people—but not Kamal. "I don't find this to be a problem at all," he says. "My machine stands next to my bed. My bedroom is the only place that has signs of being a 'clinic'. This has not once crossed my mind. The advantages this treatment offers are too great to even think about such perceptions!"
Help from the Internet
Kamal, who has been blogging since 2007 at kamaldshah.com, has some thoughts about the value of the Internet to his fellow patients. "The Internet is an amazing source of information. People who are comfortable with computers and browse the Internet can learn about their options. Those who do not should ask their doctor if there are options other than what they've been told. Many doctors do not let patients know all of the options. If patients ask, they might list them out, but point out problems and goad the patients to accept what they think is best! So, I recommend that patients talk to other patients. The Internet, I would say, is the best option!"
"In the early days, I used to rely heavily on Home Dialysis Central. It was pretty much my only source of support," reports Kamal. "I found some great friends on that site. In India, there is almost no one on this treatment. So, even nephrologists and technicians had no clue about the protocols. I got it all from this site and its wonderful members. I picked up the Buttonhole technique from this site and started using it by importing needles from the US. I told my vascular surgeon I was using the Buttonhole technique and he asked me to send him more details about it."
Kamal Recommends Home Dialysis
By this point, you won't be surprised to hear that Kamal is a huge fan of home treatments. He sees medical benefits, in terms of fewer health problems, but also in terms of lifestyle. "I work full time. My energy levels are normal. I swim every day. I travel. If someone who does not know me looks at me, they would never guess that I am on dialysis! All this is thanks to daily nocturnal home HD."
"I believe that PD and home HD are your best shot at leading the life you were meant to lead had kidney disease not hit you," he goes on. "There are risks. But, I would say the risks in the hospital or a dialysis center are far greater. With proper precautions and training, the risks can be taken care of. Your dialysis at home is much gentler, which reduces the chance of anything untoward happening."
Kamal concludes, "If you want to live a close to normal life despite being on dialysis, you want to be free from diet and fluid limits, you want to work dialysis into your life rather than work your life around dialysis, home dialysis is for you!"