Kamal Shah is a Director/Trustee of aHUS alliance Global Action. He first had aHUS over 25 years ago. It was triggered by vaccinations needed to go to the USA to study chemical engineering. He had it again when he had a kidney transplant and soon lost his new kidney Since then he has been on dialysis. He writes blogs about his experiences.
His latest has a title “A rather unusual month” . Such an under statement by someone who has had a rather unusual life living with aHUS in a country with no access to eculizumab. But for those who know him it is not surprising.
Despite the burdensome treatment that comes when no complement inhibitor is available he has co-founded south Asia’s biggest provider of Dialysis Service to kidney patients of India and beyond saving many lives. And for five nights each week he sleeps attached to a dialysis machine and has done so for over 20 years. You know the kind of usual thing we all do. What he calls ”normal”.
But being on dialysis long term does take its toll. This is despite mitigation from diet, exercise and a combination of drugs to do the things that our kidneys do without us thinking. Among them Mineral and Bone Disorder. Some treatment side effect!
Read his latest blog below and think ” What will it take for some Pharmaceutical Company somewhere to provide a complement inhibitor to support the transplant he needs and deserves?.”
And hope that Kamal can turnaround and recover soon from this latest set back.
A RATHER UNUSUAL MONTH
A typical month from my life looks like this:
- Work full time
- Swimming
- Strength Training
- ~20 nights of dialysis without any complications
- No EPO / Iron (as my Hemoglobin was normal)
- No nights spent in a hospital
- No surgeries
- No pain
- Good sleep
- Movies
- Eating out
- etc etc etc
This last month has been quite the opposite:
- Lot of time off from work, work part-time rest of the days
- No swimming / walking
- Physical Therapy to build strength
- Less than 20 nights on dialysis, some with several complications
- Lot of EPO / Iron as my Hemoglobin has plummeted
- 5 nights spent in the hospital
- One major surgery – a complete hip replacement
- Lot of pain
- Very poor sleep
- Low grade fever on most days
- Shortness of breath
- etc etc etc
The hip replacement was necessitated after a hip fracture I had on Diwali day after tripping, with my left leg (which was already in trouble) bearing the brunt of the entire body weight and breaking as a result.
To make things worse, the head of the team of surgeons who operated upon me called me a few days after the surgery and told me that they had mistakenly used a wrong sized part during the surgery. Instead of using a 36 mm diameter liner, they used a 32 mm diameter liner. The medical consensus seems to be to perform corrective surgery to replace the wrong-sized liner.
For now I don’t even want to think of the corrective surgery until I have recovered completely from the first surgery!
The last month has been very challenging. Trouble is I am used to a normal life. Daily Nocturnal Home HD does that to you. Spoils you. When you have a setback such as this one, you can find it difficult to cope.
I have dabbled with switching to Conservative Care multiple times in the past few weeks. The low hemoglobin and fever pull you down so much, you don’t feel like doing anything.
Right now, I am just hoping for a turnaround that seems to be evading me.
Article No. 551
