Wednesday, April 19, 2017

Numbness in left hand fingers

Among the two problems that I blogged about a few days back, one of them has been addressed, temporarily at least, by the hyaluronic acid injection I was given a week back. The other problem remains.

The trouble is it does not let me sleep well on my non-dialysis days. Last night, I did not dialyze and this morning I woke up finally at 4 am after having a restless one hour. And here I am blogging at 5 am in the morning after having some Darjeeling tea. My doctor has suggested that I try an ointment for symptomatic relief. Honestly, I don't like the sound of that. Basically it means that there is no permanent solution for this.

For some time, I was like a ball in a tennis match, being thrown from one court to the other court, the neurologist and the vascular surgeon playing the match - "Not a neuro problem", "Not a vascular problem"! Multiple investigations yielded no clue.

When I did not have this problem, I used to sleep till 7 - 7:30 after my non-dialysis nights. That used to feel so good because I could not sleep beyond 5 am on dialysis nights. Now I sleep well till around 5 am on dialysis nights and on non-dialysis nights, I toss and turn, sit up to relieve the numbness and then try to go back to sleep again. After a point I just give up. My watch shows 3 am or 4 am on most such nights.

I have stopped traveling completely due to these two problems. The knee pain was especially debilitating. After I have taken the injection, I am still on the NSAIDs and the doctor said he will withdraw them after a month. I have been given a timeframe of 2 months to a year by different doctors on how long the effect of the injection will last. Sometimes I think, once the pain goes completely (my knee still hurts towards early evening these days), I should travel a bit but due to the hand numbness I am quite wary of traveling. Nights would be quite disturbing since I would not be dialysing at night.

On long term dialysis, it is these additional problems that bother you more than the kidney failure itself. I honestly, don't mind the dialysis these days. I just wish it was the only thing I had to deal with.

Wednesday, April 12, 2017

Hyaluronic Acid Injection for Osteoarthritis in Dialysis Patients: My experience

To address the first problem among the two I mentioned here, I got an injection of Hyaluronic Acid in my left knee yesterday. The thought of getting an injection in the knee can be quite disconcerting even for a dialysis veteran like me who gets daily injections in his left upper arm for dialysis. I had all sorts of questions. Would the needle be put into the bone? How big would the needle be? Would they be giving me a local anesthetic? Would the entire experience be painful?

I was called to the hospital at around 4 in the evening. I reached there promptly. The injection was called Synvisc One. The Orthopedic Doctor was to administer it. He had done this many times and was very confident. He first cleaned the entire left knee with Betadine (Povidone-Iodine solution). He then injected good old Lidocaine. I use this for my dialysis too just before inserting the needles. For this procedure though, he probably inserted a whole lot more than what I do. I couldn't see what was happening because I was asked to lie down and all the action was happening in my knee.

The next step was to put in a needle and position it carefully so that it is in the knee joint. For this he inserted a syringe and then drew the piston. If blood came, the needle was not in the joint. If clear fluid came, then it was in the joint. The first time, only blood came. He then tried repositioning it. Blood again. Every time he drew the piston of the syringe, I felt some pain. It was not unbearable. It was more like a momentary shock. After about three such tries, finally, he got the needle into the joint. He quickly removed the syringe leaving the needle there. He inserted the syringe that was prefilled with the 'miracle juice' as he called it and inserted it into the needle and pushed all the contents into the joint. He removed the syringe with the needle. It was done!

It was a tough task. The Doctor was brilliant with it. To insert a needle into the joint without anything to guide you is like shooting at a target in the dark. He kept assuring me, talking to me and calming me down. I love such doctors.

Yesterday evening, I had a lot of discomfort. The knee joint felt very stiff. I found it difficult to walk. After a while, I became very restless. I couldn't sit still. I tried to distract my mind by watching a movie. The knee wasn't painful at all. It was just discomfort and restlessness. I took a low dose sleeping pill and went to bed.

Sleep was quite disturbed. I kept waking up due to the restlessness and discomfort in the knee. I had a final stretch of good sleep though and woke up feeling refreshed and much better than last night.

Overall, I think the entire experience of taking the injection was not painful. I would call it 'discomfort'.

The Doctor said the injection would take 4-6 weeks to kick in. I hope this resolves this knee pain, at least for a year.

Sunday, April 2, 2017

The one additional feature I wish dialysis machines had

Dr. John Agar asked all the patients on the Home Hemodialysis group on Facebook a few weeks back, what additional features we would like on hemodialysis machines? I don't remember the exact words and I don't even remember what I answered.

Thinking about it now, I feel that if there was an accurate way for hemodialysis machines to determine how much above my dry weight I actually was, I think it would make my life a lot easier.

Dry weight is the weight of a dialysis patient assuming there is no excess fluid in the body. Since the kidneys of a dialysis patient do not work, excess fluid and toxins that healthy kidneys remove, start accumulating in the body leading to various complications. These are removed during the dialysis treatment.

While toxins are removed automatically based on the concentration gradient between the blood and a fluid called dialysate and we usually do not 'set' the amount of these toxins to be removed, the fluid is removed based on a machine setting. You basically 'set' the machine to remove a certain amount of fluid. If you're a good boy or girl, this is typically under 1 to 2 litres. If, on the other hand, you're like me, a non-compliant patient, this could be up to 5 litres sometimes!

Now the tricky part is figuring out how much to remove? Apart from the additional fluid, the patient's weight might have risen or fallen due to various other factors - exercise, nutrition, just after a meal etc. For us nocturnal patients, the last one of these is typically the culprit. Your weight may be off depending on how light or heavy your dinner was and how long after dinner did you check your weight to determine your fluid removal goal.

Due to this, I have often tried to remove too much or too little fluid leading to all kinds of issues.

If the hemodialysis machine could automatically detect the amount of excess fluid and advise me to remove a certain amount, I could either accept or ignore that advice. The technology I think is already available. I have seen a machine some time back that used Bioimpedance to determine the amount of excess fluid in the body. It wasn't accurate enough though.

By improving the accuracy and integrating this technology into the hemodialysis machines, I am sure many patients would be saved from complications such as cramps, hypotension and breathlessness due to wrongly setting fluid removal goals during hemodialysis treatments.

Saturday, April 1, 2017

Wah re marketing!

I happened to taste Cranberry Juice from Real at my brother's house one day. I really liked the taste. I promptly bought a one litre pack a few days later and kept it in my refrigerator to sip whenever I felt like some. A few weeks after that pack got over, I went to the supermarket and happened to see a Real Cranberry Juice packet on the shelf there.

I picked it up and checked the ingredients.

If you look at it carefully, you realise that the main ingredient is water, next is sugar and in third place is Cranberry Juice concentrate. Also only 2% of the contents are actual cranberry juice! What kind of gimmick is this? Only 2%!

My eyes then fell on a packet of Tropicana Cranberry Juice. I picked that up and checked the ingredients. I thought this might be better as they have all this '100%' campaign going on.

I was in for a huge shock. Water and sugar were first and second on expected lines. However, Red Grape Juice was third and Concentrated Apple Juice was fourth! Concentrated Cranberry juice was fifth and was only a measly 0.5%!

Who allows this kind of nonsense? Aren't the regulatory authorities supposed to check such fraudulent practices? How can something that has more grape and apple juice than cranberry juice be sold as Cranberry Juice?

I had a problem with the Real product as well because that contained only 2% Cranberry Juice. and here was the Tropicana version that really took the cake!

We all need to learn to read the ingredients of what we buy from stores. I read somewhere that we should never buy anything that has more than three ingredients. While that would be really difficult to practice, at least reading the ingredients of products would give us a lot of information on what we are actually buying.

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.

Wednesday, February 8, 2017

Mindfulness - that elusive state of mind

The next time you're sipping on your favourite beverage - tea, coffee, wine, whatever, take this simple test. Try to focus completely on the experience of drinking the beverage. Feel the liquid go into your mouth, feel the taste, the temperature, the consistency. Feel it go down your gullet. See how long you can keep doing this until your mind gets distracted by other thoughts.

I used to think that meditation was something very difficult and boring. Earlier guidance I had received advised focus on the breath without allowing the mind to get distracted. This was a horribly wrong approach to meditation.

I realised later (and I'll get to how in a bit) that meditation is nothing but mindfulness, being present in whatever you are doing. While eating, be present in the exercise of eating. While you're in a meeting, be 100% present in the meeting discussion. Do not think about other things. That way, theoretically you can meditate all the time without making it sound like a chore.

However, if you're like me, you will soon realise how awfully distracted our minds are. When we are drinking tea or coffee, we are thinking about something else. When we eat, our minds jump to one thing after another. When we are having a meeting with someone about something, our mind keeps racing to something else. When we go out to have lunch with family or colleagues, we keep checking our phones.

I started reading about this a few months back when I read an article online. I was introduced to an app called Headspace. There are obviously many other apps as well. I was honestly very surprised when I realised how the mind works. I have been following the ten-minute meditation routine every morning for the last many months and I honestly have had many life-changing experiences due to this.

I am still very, very far from being mindful in daily life. However, I can confidently say that I now at least realise the extent of the problem. A simple thing like drinking some water from a glass can be completely different when we do it being 100% present. For someone like me who is on dialysis, even something so simple can make a huge difference. If I am focussing on the water, I feel much more satiated than if I let my mind wander away to something else (which is the default behaviour for most of us).

I was prompted to write this post when I read this article yesterday. The article gives some tips on how to be more mindful:

  • Practice 10 minutes of mindfulness training each day
  • Avoid reading email first thing in the morning
  • Turn off all notifications
  • Stop multitasking
  • Put it on your calendar
I would strongly recommend that you read this article. I have truly experienced some very blissful moments due to being mindful from time to time. You should, too.

Tuesday, February 7, 2017

Book Review: Dialysis - An Unanticipated Journey

I was recommended this book by Dr. P. C. Gupta, who is the vascular surgeon who created my fistula. I hold him in very high regard. He is considered one of the finest vascular surgeons in the country, someone who can literally create a fistula out of nothing! He's known me for quite some time now and told me about this book the last time I went to meet him about some numbness on my fistula arm.

The book is not available in India and I had my brother in the US order it from Amazon. It came to me after a few weeks.

The book is written by David L. Axtmann who was on dialysis for more than thirty years when he wrote the book. He was diagnosed with kidney disease in 1968 when therapies like dialysis and kidney transplants were still in their early stages. Axtmann died in 2004, after about 36 years on dialysis. In the book, he describes his journey with kidney disease and dialysis. These were days when you got dialysis only if you were between 15 and 55 years of age because of the lack of widespread availability of the treatment. In those days, patients were taught to assemble their own dialyzers. There was no blood pump and patients dialyzed for about twelve hours each time. A lot of the patients got dialysis at home.

Axtmann takes us through the turbulent times he faced describing with great detail the various medical and other problems he had while getting treated. What is striking is his desire to continue studying, at first and then working even as he struggled to cope with all the problems dialysis brought with it. Axtmann was lucky to be supported by his wife Marlene throughout the journey. They also had some very good neighbours who stood by them in every hour of crisis.

Apart from being a very inspiring story, the book also gives some very good insights into how healthcare facilities, specifically dialysis were in the 1960s and after in the US. I often wonder why the US has been the birthplace of so much medical innovation. The book gives you some nice details on how dialysis patients were treated, how the quality of life was so important, how doctors valued the patient's will and how they were so completely committed to bettering what was available.

I would recommend this book to anyone who is on dialysis r is caring for dialysis patients. It teaches us a few important lessons. Dialysis definitely need not be the end of life. Despite being on dialysis, we can live fulfilling, productive lives, lives that we were meant to lead had kidney disease not happened.

Saturday, January 28, 2017

My take on the first half of PM Modi's first term

We are about half-way into Prime Minister Narendra Modi's first term in Government. With what was the biggest mandate anyone has been elected with in recent times, he was sworn in as India's Prime Minister in 2014. We are about half way into his first term. I say 'first term', not because I am certain this will not be his only term, but because it well may not be. Given his performance and the terribly bad performance of the opposition, notably the Congress, it would be surprising if he does not get re-elected.

Overall, I think the performance of the government has been good. There have been some very good initiatives in various areas - the economy, foreign relations, fighting corruption etc. Some would argue that a lot of it is more style than substance. However, there have been many genuine achievements. Yes, some have probably not been seen through. Many of the initiatives will take much longer to complete and be judged. Some will be continuous and will not have a defined end date.

I am, what people call 'right-of-centre' in my thinking. This probably makes me slightly biased in favour of Modi than against him. However, I think I am very balanced in my assessment of the man. I have written a number of blog posts on what he did wrong and many blog posts on what he did right.

I am too naive to see behind the scenes (if there was anything like that) the actual reason for demonetisation. I remember listening to the speech on November 8th and feeling that it was a master stroke against corruption and black money. A lot has been written about the poor implementation and even hidden agendas. I really don't have an opinion on this.

What rankles me still is that the man was responsible for the 2002 riots. I was reminded yet again about the horrors of Gujarat at that time when I happened to see a part of 'Schindler's List' playing a few days back on television on the occasion of Holocaust Remembrance Day. The terror in the eyes of the Jews being massacred by the Nazis was gut-wrenching to say the least. Well, yes, the comparison is too far-fetched. 6 million Jews were killed whereas about a thousand Muslims and Hindus together were killed in 2002. To me, what is similar is the feeling of being victimised by the state for being born in a particular religion.

Modi will never be forgiven by the families of those that were slaughtered in those horrible riots. To those who say that the Congress did the same with the Sikhs, I agree with them entirely. We cannot justify one wrong by citing another wrong. Both the actions were completely wrong. Both the leaders at the time must be blamed.

So, while Modi can be praised for the good he does, he must also be blamed for his wrongs. We cannot justify one by the other.

Most people of India apart from the Muslims, I believe, have moved on. For the others, he will always remind them of 2002. Fair enough. At the end of the day, if an election is held today, he will win hands down. That's the way democracy works. We must accept it and also move on.

Thursday, January 19, 2017

My address to the United Nations opening of the NGO Committee for Rare Diseases

I spoke (via video) at the United Nations opening of the NGO Committee of Rare Diseases recently. The committee aims to address issues pertaining to rare disease patients across the globe.

I spoke about the issues of access to drugs in developing countries. I also said that the work of the committee can help patients from countries like India. Here, patients did not have access to drugs that can cure them even though the drugs were available elsewhere in the world.

This is a picture from the event.

Tuesday, January 3, 2017

Encouraging healthcare workers to admit mistakes without the fear of retribution

Recently, someone on Facebook posted this link. It described a doctor who made a mistake during a procedure and refused to admit it. Later, when he remembered an incident from childhood when his doctor had done something similar to him as the patient, he went back and apologised to the patient. This led me to think about simple mistakes that healthcare workers make.

We all find it difficult to admit our mistakes. It is human nature. However, when there is a possibility of being penalised for the mistake, then the disincentive to admit it is even higher. This can lead to some dangerous consequences.

Let us take an example. A nurse in a hospital has to do a number of procedures ranging from the really simple to some that are fairly complex. Let us say that while opening a syringe, the needle unintentionally touched a non-sterile surface. The best thing to do would be to discard the syringe and use a new one. However, if the hospital had a stringent inventory control process and the staff was penalised or scolded for using excess consumables, then what was the nurse likely to do?

Human nature would make him continue to use the same syringe. Who wanted to be penalised for this? Who wanted to answer questions from the audit team? At the end of the day, the patient would be the one who would suffer the most. This could potentially cause a serious infection depending on what the syringe was being used for.

So, while it is important for the Inventory team to do its job and ensure that operations are run in a prudent manner, hospital authorities need to figure out ways by which situations like the above can be avoided. While Inventory shortages were easy to identify, it is very difficult to identify the real cause of, in this case, an infection. Often, from the point when something like this happened to it actually manifesting itself in the form of symptoms, a lot of time has passed. So many things could have happened in the interim. How can anyone, then pinpoint that usage of that contaminated syringe caused the infection? This makes it easier for the nurse to continue to use the syringe rather than discard it and take a new one and then be reprimanded by the authorities for not being more careful.

What could be the possible solutions?

I think the first thing that needs to be done is to remove any financial penalty on the individual that commits the mistake. This can be the worst way to fix the issue. Assuming that a financial penalty, (especially when the stakes are so high) would cause the staff to be more careful in such cases is wrong.

Hospitals should allow for such instances while putting SOPs in place. Staff should be encouraged to document such instances so that audits can take these into account without any reprimands or penalties.

In some cases, proper training and education can also help avoid repeated mistakes.

Healthcare poses such challenges all the time. There is a very thin line between prudence and foolishness. Crossing this line can harm patients. At times, this harm can be irreversible. It is upon the administrators to identify the ways in which this can happen and fix the issues.