I just got an email from the institute in Italy where I had sent my blood samples to be tested for the genetic abnormalities that have been implicated in atypical HUS. I was hoping they could advise me about a transplant based on the results. Unfortunately, they were unable to extract the DNA from the samples.
The whole process of actually obtaining the samples in the desired form involved a lot of effort (you can read about that here, here, here, here, here and here). It cost me quite a bomb too. Though the good folks at Italy did not charge me anything for actually doing the tests, the courier cost quite a lot since the samples had to be sent at a temperature between -20 to -80 degrees centigrade.
I am at a loss. They have now asked to send the DNA samples directly. I need to check if there is anyone capable of extracting DNA samples here. Then I will need to figure out how to send the samples and then actually send them. This is so frustrating. I am sure the institute in Italy did their best and I am sure this was unavoidable. But for me, this is really frustrating.
It is not as if I can avoid doing the tests altogether. The results of this test will dictate whether or not I should go in for another transplant and if I should, then what regimen must be followed - whether plasmapheresis must be used or if they would recommend the new drug, eculizumab.
The problem with a rare disease is that not many people have any interest in finding out about it. Even if they find out something, how many people is it going to benefit? If my nephrologist spends time reading up about aHUS, how many people is it going to benefit? All of one. Me. Not worth his time. On the other hand, if he reads up about Diabetic Nephropathy, for instance, he will be benefitting a large number of people.
Where does that leave me? To fend entirely for myself.
Tuesday, August 31, 2010
Monday, August 30, 2010
Once you know the basics, its all about common sense
The basics (for folks on dialysis):
PTH is inversely proportional to Calcium
Calcitriol increases Calcium and therefore decreases PTH
Target Calcium - 8.5 to 10.5 mg/dl
Target PTH - 150 to 200 pg/ml
Hint to self: Try not to get off Calcitriol - since it has helped tremendously with my bone pain - Vit D is thought to have other unknown roles apart from the obvious role of improving Calcium absorption and PTH suppression
When I did my blood tests a few weeks back, my PTH was 448 pg/ml while my Calcium was 9.9 mg/dl. If I took more Calcitriol, my PTH would have come down but my Calcium would have also gone up which was not a good thing.
I could also have increased the Calcium conentration of my dialysate which would have brought my PTH down but that too (obviously) would have taken the Calcium way up!
Enter Cinacalcet.
Cinacalcet was a recent drug that would reduce PTH without increasing Calcium. (This got added to the Basics list.)
I started Cinacalcet 15 mg/day. (Credit to Dr. Girish Narayen, my super nephrologist!)
(Aside: He also asked me to stop calcitriol which I did not do….. ssshhhhh)
Results of blood tests yesterday:
PTH - 187 pg/ml
Ca - 10.2 mg/dl
So, I did manage to get my PTH down without increasing my Calcium too much! And I did not even stop Calcitriol! Yay!
So you see, once you know the basics, it is all about common sense!
PTH is inversely proportional to Calcium
Calcitriol increases Calcium and therefore decreases PTH
Target Calcium - 8.5 to 10.5 mg/dl
Target PTH - 150 to 200 pg/ml
Hint to self: Try not to get off Calcitriol - since it has helped tremendously with my bone pain - Vit D is thought to have other unknown roles apart from the obvious role of improving Calcium absorption and PTH suppression
When I did my blood tests a few weeks back, my PTH was 448 pg/ml while my Calcium was 9.9 mg/dl. If I took more Calcitriol, my PTH would have come down but my Calcium would have also gone up which was not a good thing.
I could also have increased the Calcium conentration of my dialysate which would have brought my PTH down but that too (obviously) would have taken the Calcium way up!
Enter Cinacalcet.
Cinacalcet was a recent drug that would reduce PTH without increasing Calcium. (This got added to the Basics list.)
I started Cinacalcet 15 mg/day. (Credit to Dr. Girish Narayen, my super nephrologist!)
(Aside: He also asked me to stop calcitriol which I did not do….. ssshhhhh)
Results of blood tests yesterday:
PTH - 187 pg/ml
Ca - 10.2 mg/dl
So, I did manage to get my PTH down without increasing my Calcium too much! And I did not even stop Calcitriol! Yay!
So you see, once you know the basics, it is all about common sense!
Sunday, August 29, 2010
Wanted: A Nandan Nilekani for State Sponsored Healthcare
I just got back from the coupon distribution of the Jain Dialysis Trust which is held on the last Sunday of every month. This event always leaves me full of mixed emotions. On the one hand, I see so many patients being benefited because these coupons are often the difference between life and death for them. On the other hand, I see a terrible lack of information about what constitutes optimal dialysis.
I overheard a donor ask a trustee about how many times a patient needs to undergo dialysis. I smiled in my mind. The classic question! How many times does a patient need to undergo dialysis?! Really. That is such a loaded question. Depending on the person asking the question and the person answering it, you could have totally different answers!
To someone totally uninitiated, how do you answer that question? To someone who has been undergoing dialysis for a while now, how do you answer that question? Most people I saw today find it difficult to even spend the Rs. 300 that they need to per session. They can barely manage to get 8 sessions a month. How do you then even begin to talk about things like more frequent dialysis and its benefits?
The trust itself is doing an excellent job by giving the gift of life to about 200 patients. What should their priority be? Better dialysis for lesser number of people or the minimum dialysis required for a larger number of people? Probably the latter. The more the number of lives you can save, the better, I guess.
What is the way forward? How do we change this?
Only the government can do something in this regard. It needs to get its priorities right. It is not as if it is an impossible task. Arogyasree has shown us that it is possible. All it needs is a little creative thinking and some balls. Instead of spending crores on things like the Commonwealth Games, the government should expand this scheme and introduce it across the country. Yes, there are problems with it. Make someone committed from the private sector in charge of it. Like they did by making Nandan Nilekani in charge of the Citizen Identity program. Give him or her a free hand. The results will be surprising.
I overheard a donor ask a trustee about how many times a patient needs to undergo dialysis. I smiled in my mind. The classic question! How many times does a patient need to undergo dialysis?! Really. That is such a loaded question. Depending on the person asking the question and the person answering it, you could have totally different answers!
To someone totally uninitiated, how do you answer that question? To someone who has been undergoing dialysis for a while now, how do you answer that question? Most people I saw today find it difficult to even spend the Rs. 300 that they need to per session. They can barely manage to get 8 sessions a month. How do you then even begin to talk about things like more frequent dialysis and its benefits?
The trust itself is doing an excellent job by giving the gift of life to about 200 patients. What should their priority be? Better dialysis for lesser number of people or the minimum dialysis required for a larger number of people? Probably the latter. The more the number of lives you can save, the better, I guess.
What is the way forward? How do we change this?
Only the government can do something in this regard. It needs to get its priorities right. It is not as if it is an impossible task. Arogyasree has shown us that it is possible. All it needs is a little creative thinking and some balls. Instead of spending crores on things like the Commonwealth Games, the government should expand this scheme and introduce it across the country. Yes, there are problems with it. Make someone committed from the private sector in charge of it. Like they did by making Nandan Nilekani in charge of the Citizen Identity program. Give him or her a free hand. The results will be surprising.
Friday, August 27, 2010
Am I really hooked to dialysis?
A few months back I switched to seven days a week dialysis as opposed to taking Sundays off. The reason was simple. Weekends, I generally have little to do. I don't go to work. I usually eat out or go for a movie with my family. As a result, I tend to have a little more fluid than usual. So, if I don't dialyse on Sunday nights, sometimes on Mondays, I feel just a little different.
Different. Not uncomfortable. Not uneasy. Just different.
So, I thought why not dialyse on Sundays too? I have been doing that for the past few months now. I take a weekday off once in a way. This happens rarely though.
All this has led my brother Karan to say that I am really hooked to dialysis. When he was here on a break from his MBA in the US, he often teased me about this. Around 8 in the evening, he would say, "Its already 8! How come you've not yet started?"
This has set me thinking. Am I really hooked to dialysis? Am I dialysing to live or living to dialyse??
The truth is that I don't want to restrict what I eat and drink. And this is possible only if I dialyse regularly. I have not yet been able to get rid of my mental obsession with fluids. Inspite of four years on daily nocturnal, I have not yet been able to think of fluids like a normal person does. I still pull off 2.5 to 4 liters of fluid a day. Please do not tell me how wrong or abnormal this is. I know.
This is the main reason I like to dialyse daily. No, however much this may seem the case, I do not enjoy the process of dialysis, I do not enjoy the needles in my arm and I do not enjoy being tied to a machine every night of the week just to be able to eat and drink what I want.
Different. Not uncomfortable. Not uneasy. Just different.
So, I thought why not dialyse on Sundays too? I have been doing that for the past few months now. I take a weekday off once in a way. This happens rarely though.
All this has led my brother Karan to say that I am really hooked to dialysis. When he was here on a break from his MBA in the US, he often teased me about this. Around 8 in the evening, he would say, "Its already 8! How come you've not yet started?"
This has set me thinking. Am I really hooked to dialysis? Am I dialysing to live or living to dialyse??
The truth is that I don't want to restrict what I eat and drink. And this is possible only if I dialyse regularly. I have not yet been able to get rid of my mental obsession with fluids. Inspite of four years on daily nocturnal, I have not yet been able to think of fluids like a normal person does. I still pull off 2.5 to 4 liters of fluid a day. Please do not tell me how wrong or abnormal this is. I know.
This is the main reason I like to dialyse daily. No, however much this may seem the case, I do not enjoy the process of dialysis, I do not enjoy the needles in my arm and I do not enjoy being tied to a machine every night of the week just to be able to eat and drink what I want.
Monday, August 23, 2010
Will the Mahankali temple down the road please change its only bhajan casette?
There is a Mahankali temple down the road from where we live. We moved to the place where we currently stay about 14 years back. Every year around this time of the year, the festive season starts. You first have the Bonalu festival, followed by the Ganesh festival, then Dasara, finally culminating with Diwali.
Every morning, during this entire season, the temple plays devotional music. On a loudspeaker. This music is audible in about a 2 kilometer radius. This post is not even about my problem with that. Though I am dead against 'loudspeaker religion', I will save my comments on that for another post. My problem is that this temple plays the same bhajan casette every morning, every day of the season, FOR THE PAST 14 YEARS!
I now know the exact order in which the songs come. When one song ends, I can tell which one is next. In fact, if I hear one of the songs somewhere else in some other context, I feel very odd and uncomfortable because the next song does not come!
So, here is my simple request to the temple authorities: Please, change the casette.
Every morning, during this entire season, the temple plays devotional music. On a loudspeaker. This music is audible in about a 2 kilometer radius. This post is not even about my problem with that. Though I am dead against 'loudspeaker religion', I will save my comments on that for another post. My problem is that this temple plays the same bhajan casette every morning, every day of the season, FOR THE PAST 14 YEARS!
I now know the exact order in which the songs come. When one song ends, I can tell which one is next. In fact, if I hear one of the songs somewhere else in some other context, I feel very odd and uncomfortable because the next song does not come!
So, here is my simple request to the temple authorities: Please, change the casette.
Friday, August 20, 2010
Caregiver burnout
Kidney disease can be quite taxing for an individual. It is not a short term thing. It is often something you have to live with life-long. Yes, you often have years of peace but it often comes back in some form or another.
This can also take its toll on caregivers, the people around the individual affected by the kidney disease. The serious nature of the disease makes the patient the center of the world around him or her. The entire family's life often revolves around the patient and the disease.
There are surgeries. There are doctor visits. There are hospital stays. There could very well be dialysis which is often a thrice a week thing which takes up half the day. Week after week.
In all this, often the primary caregiver undergoes tremendous stress and frustration. Worse, this is rarely recognized and addressed. The patient occupies centerstage and there is no bandwidth in anybody's mind (including the caregiver's) to recognize that there are problems elsewhere as well.
This is a genuine problem. There are simple solutions however. They may not address the problem entirely. They can help alleviate the problem partially though. And this may be a big relief in itself.
We, the people with kidney disease must realize that our problem affects others too. Most definitely, we are affected the most. No denying that. However, there is a definite effect on our families too. We must be sensitive to this. A simple word of gratitude for them can make them feel much better. Also, we must try to become as independent as possible. Not only will we feel stronger, but this will also reduce the things our families have to do for us.
Primary caregivers must learn to take some time off from the patients and the disease. They must do the things they like to do, away from the patient, without feeling guilty. This will help not only the caregiver but the patient too.
These are little things that make a big difference. Both the patient and the caregiver must appreciate this problem and make a conscious effort to make sure that kidney disease does not take over their lives.
This can also take its toll on caregivers, the people around the individual affected by the kidney disease. The serious nature of the disease makes the patient the center of the world around him or her. The entire family's life often revolves around the patient and the disease.
There are surgeries. There are doctor visits. There are hospital stays. There could very well be dialysis which is often a thrice a week thing which takes up half the day. Week after week.
In all this, often the primary caregiver undergoes tremendous stress and frustration. Worse, this is rarely recognized and addressed. The patient occupies centerstage and there is no bandwidth in anybody's mind (including the caregiver's) to recognize that there are problems elsewhere as well.
This is a genuine problem. There are simple solutions however. They may not address the problem entirely. They can help alleviate the problem partially though. And this may be a big relief in itself.
We, the people with kidney disease must realize that our problem affects others too. Most definitely, we are affected the most. No denying that. However, there is a definite effect on our families too. We must be sensitive to this. A simple word of gratitude for them can make them feel much better. Also, we must try to become as independent as possible. Not only will we feel stronger, but this will also reduce the things our families have to do for us.
Primary caregivers must learn to take some time off from the patients and the disease. They must do the things they like to do, away from the patient, without feeling guilty. This will help not only the caregiver but the patient too.
These are little things that make a big difference. Both the patient and the caregiver must appreciate this problem and make a conscious effort to make sure that kidney disease does not take over their lives.
Thursday, August 19, 2010
Secular schools should be really secular
Most schools in India are secular. They not affiliated to any religion in particular. Some schools, on the other hand, are started by religious organizations.
It is perfectly all right for schools that are run by religious organizations to promote or teach their religion.
It is important however, for secular schools to be truly secular. The 'G' word must never be mentioned. Now, before you go about shouting me down as an atheist, let me clarify that I believe in religion and am a temple-goer. I however believe that teachers should never mention religion or anything related to it.
Every religion is different. Yes, we've heard many times that the fundamentals of every religion are the same. However, there are some basic differences between the major religions.
Christianity and Islam say that there is one omnipotent God. Hinduism has a pantheon of Gods, all omnipotent. Jainism is an atheistic religion and says there is no omnipotent God and places 'karma' as the ultimate force.
This is a very major difference between these religions.
Most schools however (unintentionally?) propagate the monotheistic line of one omnipotent God who helps us or punishes us. This belief sometimes becomes so ingrained into children that they find it very difficult to reconcile or accept any differing belief even if it is the one their family follows.
Religion is an intensely personal thing and it is entirely up to an individual whether to follow it or not and if yes, which one to follow. It is definitely not something that should be learnt at school.
It is perfectly all right for schools that are run by religious organizations to promote or teach their religion.
It is important however, for secular schools to be truly secular. The 'G' word must never be mentioned. Now, before you go about shouting me down as an atheist, let me clarify that I believe in religion and am a temple-goer. I however believe that teachers should never mention religion or anything related to it.
Every religion is different. Yes, we've heard many times that the fundamentals of every religion are the same. However, there are some basic differences between the major religions.
Christianity and Islam say that there is one omnipotent God. Hinduism has a pantheon of Gods, all omnipotent. Jainism is an atheistic religion and says there is no omnipotent God and places 'karma' as the ultimate force.
This is a very major difference between these religions.
Most schools however (unintentionally?) propagate the monotheistic line of one omnipotent God who helps us or punishes us. This belief sometimes becomes so ingrained into children that they find it very difficult to reconcile or accept any differing belief even if it is the one their family follows.
Religion is an intensely personal thing and it is entirely up to an individual whether to follow it or not and if yes, which one to follow. It is definitely not something that should be learnt at school.
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