Empowering dialysis users and caregivers
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 have been having recurrent diarrhea for the past month or so. I am on my third antibiotic course. Everything seems to be ok for a few days and then it starts again. The day before yesterday, the gastroenterologist suggested that we do an endoscopy and a biopsy of the duodenum.
This sounded scary. Biopsy of the duodenum? Whatever did that entail?!
I have become an endoscopy veteran by now and have had more than I care to count. In fact, I stumbled upon this post where I actually compare how endoscopies have changed over the years! Just imagine! So, I wasn't in the least worried about the endoscopy. It was the other beast I was worried about. How can something called 'biopsy of the duodenum' be anything pleasant?!
Anyway, these days I have stopped thinking about all this, stopped applying my mind to my treatment and surrendered completely to the doctors. Its become a pointless exercise. So much of it is just trial and error!
So, I went ahead and got the endoscopy and the duodenum biopsy done. I was advised to do a heparin-free dialysis that night. A biopsy involved cutting off a tiny little piece of the tissue in the duodenum and examining it under the microscope. So, there was a small chance of bleeding. Heparin is the drug that is used for almost all dialysis patients to prevent the blood from clotting when it is outside the body getting purified in the artificial kidney. So, if you used heparin after a biopsy (and even a surgery), chances are that the site of injury will start bleeding.
It is normally fairly straightforward to do a heparin-free dialysis in-centre during the day. All that is needed is to flush the lines with saline every 30 minutes. At night, it can be quite a bother. Giving a saline flush every 30 minutes means someone needs to stay up the whole night. Guru, the tech who dialyzes me was, as usual, very co-operative. He stayed up the whole night and religiously flushed my bloodlines with saline every 30 minutes.
All in all, everything went off well. The biopsy report is expected in 4-5 days. Let us hope we get some clue on what the issue is.
However, I am not sure if that is entirely accurate. Dialysis, however much you get, can never replace all the functions of the kidney. There are some functions that it does not even attempt to replace. That is left to the medicines to manage. We unfortunately know so little about the human body that it is always an uphill task to manage such intricate mechanisms within the body with a bunch of tablets.
Only a transplanted kidney can give you close to normal body functioning. Things like Mineral and Bone Disorders (MBD) are very difficult to get a handle of. I have experienced this first hand. I am struggling with severe, debilitating bone pain from the past month or so, something which has been getting worse and we were not able to do anything to arrest it. Even seasoned nephrologists agree that MBD is something that they are just not on control of yet.
The trouble with me is my primary disease - Atypical Hemolytic Uremic Syndrome (aHUS). With this disease, the chances of recurrence after a kidney transplant are more than 90%! Which pretty much rules me out from getting one unless I get access to a drug that will prevent recurrence of the HUS.
There is a drug Eculizumab that is available in many countries that has been shown to prevent recurrence of HUS in transplanted kidneys. There is one more drug (Omeros 721) in clinical trials stage. Both these drugs are not available in India yet.
I just hope they become available before my MBD gets out of hand.
India currently spends about 1% of GDP on healthcare. China spends about 3% and the US about 8.3%. That is about to change. If things go as per plan, Prime Minister Narendra Modi's government is planning to rollout Universal Healthcare for India beginning April 2015. The project will be taken up in phases and would eventually cover the entire country by March 2019.
I have always been a proponent of Universal Healthcare. The erstwhile united Andhra Pradesh state had shown the way by implementing the dramatically successful Aarogyasri scheme where people who were below the poverty line (BPL) were given access to healthcare they could only have dreamed of in the past. Currently, of course, the number of beneficiaries of the scheme far exceed the number of people who were BPL as per the records. The scheme is being misused by people who are not the intended beneficiaries. Despite this, I would say the scheme is really good because the lives of thousands of poor people are being saved every year thanks to this scheme. The loopholes must be plugged and the scheme continued.
Modi's task would, of course, be far more challenging. For starters, however, they wouldn't have to worry about unintended beneficiaries getting the benefits of the scheme. There would be no unintended beneficiaries as the scheme is not restricted to BPL people. It is for all. Some might argue that this is not wise as there was no need to subsidise healthcare for people who could afford it. While this argument holds merit in the case of the super rich, ask any middle class family with someone on a chronic condition like dialysis and you would see how medical treatment can wipe out any average family's life's savings in just a few months.
The scheme is going to cost the government about $11.4 billion annually. To put this number in perspective, India spent $47.4 billion on defence in 2013. So a fourth of that for Universal Healthcare is a good bargain, if you ask me!
The plan is being thought through well. Primary healthcare will continue to be offered by the Government especially in rural areas where infrastructure is going to be improved. Tertiary healthcare is going to be offered through the insurance model. The scheme includes some basic drugs and diagnostic tests free.
While reaching the entire country in an effective way will obviously take decades (which is not surprising since it involves a sixth of the world's population!), we must not shy away from this basic necessity of the people due to this. A beginning has to be made somewhere.
I have always maintained that access to healthcare should be a fundamental right. No citizen of the country should be allowed to suffer if a treatment is available just because he or she cannot afford it.
Dr. Martin Luther King, Jr had once said, "Of all the forms of inequality, injustice in health care is the most shocking and inhuman." Let us not allow this injustice in health care to continue for much longer in our country.
I was talking to a group of dialysis patients a few months back. I first did a general talk about how to have a good quality of life despite being on dialysis. I then had a Q&A. Typically, questions in this kind of a session invariably turn towards the diet. Diet, for most dialysis patients, is the worst problem if you don't count fluid restrictions.
I was answering some of the general questions on diet when a gentleman, probably about 60 years old started shouting. His contention was that any talk about things like diet was totally unnecessary and he even called it vulgar. I was quite taken aback. He said his wife was on dialysis and their entire life's savings have been spent on her treatment. The anger in his voice was palpable. For him, any talk that purportedly gives support to dialysis patients should only be about how patients should work together to get the government to subsidise dialysis or even make it free.
I explained to him that while I understood the financial problem of dialysis patients and their families, for the patients, diet is a big problem. Addressing the financial issues was going to take time in a country like India because a huge, concerted effort from patients, families, providers, doctors etc. would be needed and the process would be very slow. In the meantime, what was wrong in patients getting some queries answered on their diet and other simple things that could make their life better?He softened up after this.
I could totally understand his problem though. While in developed countries, patients don't need to think about how much their treatment costs, in India, treatment options are primarily dictated by ability to pay. When patients are often wondering how long they would be able to continue dialysis, talk about diet, exercise, quality of life etc. may appear vulgar!
When I talk about more frequent dialysis, I realise that a large number of patients would do it if they could afford it. When the constraints are not in your control, what really can you do?
Honestly, I was quite shaken up by the gentleman's outburst. Their life probably turned upside down after the diagnosis. All their plans probably went haywire. He needed some place to vent. He obviously couldn't vent in front of his wife. I am at least hoping that he didn't do that! A guilt trip is the last thing a dialysis patient needs!
This is why I am fully supportive of any attempt at Government sponsored healthcare. We need to eventually get into a mode where an individual gets the treatment he or she needs without having to worry about where the money for this is going to come from.
Its been about six months since the Government took over. When the Government was sworn-in, I had written about how very rarely, in this day and age, does a Government get such an overwhelming majority in the Indian Parliament and why this opportunity must not be squandered.
Though the Government has done a decent job on a lot of fronts, the danger of not succeeding lies within. We see, with amazing alacrity, every now and then, some Hindutva-obsessed lunatic making a remark or doing something so crazy that the Government has to spend an inordinate amount of time defending this.
Let there be no mistake. This Government was not elected on the Hindutva platform. There was nary of mention of religion in Modi's speeches. Yes, there was the odd ridiculous speech here and ludicrous interview there. But, by and large, it would be safe to say that this election was won on the platform of development.
There is so much to be done by the Government. Some very good initiatives have been rolled out, some are on the drawing board. India can ill-afford to have the Government's focus shift away from these critical issues. Let us not forget that we may not see a Government with a majority in the near future.
Another important aspect is that there was a lot of distrust of Modi among the minorities. That did reduce recently. A large number of Muslims and Christians voted for Modi assuming that he would solve their basic problems. When the demented dudes and dudettes of the Parivar are given a free rein, and some actually encouraged, these minorities would feel let down. They will never vote for Modi again. The task at hand for the Prime Minister is not one that will be accomplished in one term. We need a strong Government for at least two terms to give any positive direction to the country. Without the support of the minorities, I am afraid, such a majority in Parliament would not be possible.
Modi is seen as a strong leader. Few doubt his intentions. If he does not act soon enough to control these loose canons and makes sure he takes the entire country with him in the march to development, he would have lost a huge opportunity to make a real difference. He would have only himself to blame for this.