Friday, March 10, 2017

To move or not to move, that is the question

My parents and I have been staying in our current house for about twenty years now. We built it from scratch. It has served us well. There are a few things however that I don't like about it.

When we built the house, the area was very quiet. You could hardly hear a thing even during the day. The last two decades have seen so much activity in this area that now, even at around five in the morning, you hear vehicles passing by.

So, we've been exploring the idea of moving to that area to an apartment in a quiet part which has some basic amenities like a swimming pool and gym that we could use. Having a gym and a pool right in the apartment complex makes it much easier to go every day. My parents use the gym and I hit the pool almost daily and we need to travel around 10-15 minutes currently to get to these places.

When I get up in the morning, I like to sip on a hot cup of tea by my backyard followed by a ten minute meditation routine. These days, the noise even at that time, bothers me quite a bit. If we took an apartment on a higher floor, this problem would be eliminated.

The commute to my office also takes me about 45 minutes each way on most days. Moving to that part of town would reduce this by half at the very least.

We've seen some apartments. Nothing has quite worked out yet.

We often wonder if we would be able to adjust to an apartment after living for so long in a house. I am also a little worried about the availability of good quality water for my dialysis. Our requirement would be more than the average household.

We've still not made up our minds. The cycle of see-a-good-place, almost-decide, back-off has been repeating much too often for our own good.

We must either bite the bullet and move or stay put here for a few more years. We must decide!

Thursday, March 9, 2017

My current set of health problems

I have often said I can deal with having to do dialysis but it's the comorbidities that bother me. Here are the two main things that currently bother me:

Left knee pain:

I've been diagnosed with Grade II Osteoarthritis which is causing pain in my left knee. The pain started off behind the knee, on the back of the leg and was diagnosed by an MRI as a Baker's Cyst. I was advised to take an anti-inflammatory drug. This helped with the pain. But then I went on a trip to Goa last week which messed the knee up completely.

Ever since I've returned, I have been unable to sleep well on dialysis. Whenever I remove fluid at a rate greater than 400 ml per hour or go even slightly below my dry weight, the pain becomes unbearable. I have now been advised an injection of hyaluronic acid. This is supposed to give temporary relief for a few months to a couple of years. I might take it next week.

Numbness of left hand

This started maybe about a year back. I usually don't dialyze on Tuesdays. This is my 'weekly off' from dialysis - the night when I could sleep at a 100% efficiency. While dialysing, I generally sleep at 80% efficiency. It also gives me some 'me-time' at night! I used to look forward to these days. 

But for the last few months, I have developed some numbness in my left arm and especially my left hand which just does not allow me to sleep beyond an hour at a time. My hand becomes completely numb. I need to get up, shake my hand, sit up and massage the hand a little to relieve the numbness and then try to go back to sleep. Strangely, I do not have this problem when I am on dialysis. So, on non-dialysis nights, I am up by around 4 a.m. which is when I give up trying to go back to sleep!

I have consulted a neurologist who put me on some medication for nerve pain. It was also thought to be a vascular issue (Steal Syndrome) which was ruled out by a test that measured blood flow to the hand. Currently, it looks like the doctors don't know what's causing the numbness and therefore don't know how to treat it. So, I guess I will just have to grin and bear it!

Wednesday, March 8, 2017

Wrong place at the wrong time

India, in the early 2000s is a wrong place to be in, in the wrong time for someone on dialysis.

I felt this really strongly last evening when I was watching television and while switching channels came across a program that was showing the Darjeeling mountain train that was used some decades back to transport tea from the gardens up the hills to the towns below for distribution. These days, however, the teas are moved by road transport, a much less romantic method and the trains are used by passengers.

I wished to experience the mountain train, the mist in the hills of Darjeeling, the champagne of all teas sitting by a tea garden and the beautiful weather this hill station offers. But alas, dialysis restrains me!

I have a pretty comfortable life on dialysis. But the greed of my mind knows no bounds. It yearns for what I do not possess. However, I do not ask for anything too fancy. I do not ask for a cure for my kidney disease. I do not ask for a complement inhibitor with which I can have a successful transplant. All I ask for is a machine that has been available in the US for ten years now. Is that really too much to ask?

The NxStage System One is a portable dialysis machine allows people on dialysis to travel freely. It is not the perfect machine. But it has freed up hundreds of dialysis patients in the US giving them the ability to travel. All I ask for is the access to this machine with the consumables.

There are several new technologies being developed which, in the next five to ten years will change dialysis completely. Those are the claims at least. I so wish these technologies were available a little earlier. I want them NOW.