Hello, I'm Kamal from Hyderabad, India. I have been on dialysis for the last 13 years, six of them on PD, the rest on hemo. I have been on daily nocturnal home hemodialysis for the last four and half years. I can do pretty much everything myself. I love to travel and do short weekend trips or longer trips to places which have dialysis centers. Goa in India is a personal favorite. It is a great holiday destination and has two very good dialysis centers.
I was considering a product for use recently. This was not the traditional Erythropoietin injection for which generally the cold chain is recommended. Cold chain means maintaining the product at a temperature of between 2 to 8 degrees centigrade to ensure that it remains effective when it is used. This is because the product contains certain ingredients that are effective only if maintained at that temperature. The moment you keep them outside the required temperature, the product loses its effectiveness and even after that period, if you bring it back to the temperature, it is no longer effective.
On the product I was reviewing, it was clearly written that it must be maintained between 2 to 8 degrees centigrade. The samples that I had got did not come with an ice pack (which is the most common way to maintain the product at the desired temperature for short periods when they are delivered to the end user). I was surprised. I thought that the person who delivered the product might have messed up.
I irately called up the vendor and told him that the product was delivered to me without an ice pack. I was shocked by his response. He said this product did not require to be maintained at cold temperatures! I told him it clearly stated on the pack. He said that they write that but it really does not require the cold chain.
I gave up.
The horrifying thing about this is that this product is in use at many hospitals from ages. I can almost guarantee that many people are using this without realising that the product is not effective. Many patients have been put at untold danger by using this product. When the vendor himself is so callous about such an important aspect, where does that leave the poor patients?
I remember reading some peer reviewed papers in medical journals that tested this product and found it to be as effective as another product that did not need a cold chain but had certain other disadvantages. Somehow Indian doctors were a little apprehensive about the results. I now know why!
I sometimes feel very helpless. Before any product reaches me, the end user, a patient, how many people does it go through? Even if we assume that the manufacturer did a good job (it is in his interest that the proper conditions are maintained because the effectiveness of his product is extremely important for him), what about the numerous other people who would not be as careful? Even if one person is not careful enough, the product could be rendered ineffective!
With so many challenges faced by us patients, here is yet another.
Here are some pictures:
She, by no means, plans to take it easy. She is now looking for opportunities and, if I know her well enough, will not be a stay-at-home person even after retirement. She had me prepare her resume a few weeks back. I have been pushing her to do something less exacting. I would not want her to do nothing for sure but I do not want her to take up a regular job!
Here are some pics from her retirement event at the bank:
On the career front, things have been going pretty well. I got started on a very exciting new project for NephroPlus a few months back. This project could really change the way decisions regarding dialysis patients are made in the country. It will not only impact NephroPlus patients but also patients from all over the country whether they are dialysing at NephroPlus or not! Things have become fairly hectic over the past few months with multiple streams of work picking up momentum and a large number of centres being opened this year - we are 30 centre strong now! So, on the work front, things have been pretty good!
On the finances front, things are just about stable. I am able to take care of my dialysis expenses and able to save just enough to buy the latest devices Tim Cook and his team come out with from time to time! However, a few days back, my Bank Relationship Manager visited me. He brought along a colleague who advises on mutual funds and they advised me to invest regularly in some mutual funds. They said I should be investing in a mix of Mid-cap and Balanced funds and keep a small part of my earnings in Fixed Deposits (FD). I hate FDs because the interest rate is so pathetically low that the returns are practically nothing! I have taken their advice and have set up a small portion of my salary into some mutual funds. I guess the Apple Watch might have to wait for some time!
On spirituality, I have taken one big step. I now go every Sunday morning from 9:30 to 11:30 to teach kids about the basic concepts of Jain Dharm. I believe unflinchingly in the basic concepts of Jain Dharm (not the various add-ons that have been introduced over the past many decades!) and I really enjoy teaching these concepts to the young, inquisitive minds (12 years and over), mostly in English. This needs me to read up on the stuff as well, something I have been meaning to do from a long time but haven't!
On the health front, there is one nagging issue - the bone pain in my right upper thigh and the neuropathy/bone pain in my feet. The left foot especially has been bothering me. There is a sharp pain in the upper, middle part and the numbness is crazy. I have no clue what this is and what the heck we can do to fix it! And then of course, there's the dialysis bit which I can't really do too much about. But things are stable here. Swimming is on as well.
I have taken on a new hobby these days. Reading! I am currently reading three books simultaneously! Two of them have been gifted by a dear friend from Bengaluru. The three books are of three disparate genres. One is an English translation of 'Parva' by Bhyrappa which is a de-mythified version of the Mahabharata. It presents the Mahabharata in a completely historical manner where there's no supernatural stuff happening. Very interesting take on the Mahabharata. It gives me a lot of clues into the truth behind the supernatural stuff that has been introduced into my religion as well. I also took to playing the keyboard (musical) after many, many years!
So that's an update on the major fronts in my life!
I really believe that it is very important for each of us to make small advances in each sphere that is important to us. Often, we get so engrossed in our day-to day lives that we ignore everything else. Again, these aspects could be different for every one of us. But it is essential to make a conscious choice of what's important and what is not and then work on each of these. They could change as well from time to time. We must make sure that it is happening consciously and not merely by default.
When I think about what I think, I find that whenever I am doing anything other than work, my mind wanders around like crazy. I am thinking about one thing after another all the time, continuously. For example, when I am swimming, I am thinking about a hundred other things, each for a few seconds. Instead of enjoying the swim, I am ruining it by not focussing on it. When I am driving as well, thoughts flood my mind; when I am drinking tea as well!
When I am feeling a little weak once in a way and am lying down, I reach out for my phone and check arbitrary things, things that are not at all important. I have noise in my brain all the time. Much like Brownian motion!
Many times, I feel I need to control my mind. I need to focus on what I am doing and live and relish every moment of it. I have heard that meditation helps to make the mind more peaceful, to enjoy the moment, so to speak. However, I find it very difficult to meditate even for a minute. The whole concept of sitting and doing nothing else and just emptying my mind and focussing on one thing like breathing for example, seems totally beyond me. I have tried many times.
So, when this article came up in my Pocket recommendations, I read it and found it to have some practical solutions to this problem. It talks about some easy ways to achieve the same results as meditation without the boredom associated with it. The results are similar to those achieved by meditation - at least the ones I am interested in - to reduce the noise in my brain.
I have started practising some of the techniques mentioned there and I think it might be working.