Being proactive about my health - no choice in the matter

I have been doing a lot of reading up, analyzing and documenting aspects related to my bone pain. The results have been promising. I have actually been able to figure out something that the doctors have been flummoxed by. Honestly, without being modest at all, I don't think what I have come up with is anything out of the ordinary. Anyone, with basic common sense, and more importantly, the willingness to put in the time and effort could have arrived at the same conclusions as I did.

Then why did the doctors not give me the breakthrough? After all, they have studied this stuff at medical college and they have been in this field for years now. If anything, the solution should have struck them as soon as they heard about the problem. This did not happen. Why?

The problem is time.

Doctors I interact with and who treat me simply do not have the time. They do not have the time to look at an individual's case, think about the problem and analyze it from different angles. They are dealing with so many people like me with a gamut of problems. If they had to spend the amount of time required to actually solve these kinds of problems, they cannot even give the minimum amount of time required for each patient.

Where does that leave the patients?

The vast majority of patients I have come across are not familiar with computers or the internet. They continue to manage with the bare minimum advice they receive from their doctors. If they are stuck with a problem that is not being diagnosed correctly by their docs then they simply continue to suffer. They have no recourse.

For people like me, the internet turns out to be invaluable. Almost life-saving. Using the internet, I have a wide range of resources at my disposal, access to cutting edge information and also the opportunity to reach out to experts in the field who are often kind enough to respond helpfully to someone they have never met, never seen, do not know and someone who is possibly half way round the globe.

Its simply a matter of being willing to put in that extra effort to help yourself. Who benefits but you?

The next step for me is to find out all I can about a potential transplant. Just what is this disease - HUS - that is so predisposed to recurrence after a transplant? What can be done to avoid recurrence after a transplant? What immunosuppression regimen is best in my circumstances?

I have a busy few weeks ahead!

Its all falling into place

First a little bit about PTH and its role in the human body. This is interesting. Bear with me for a bit.

The most important purpose of the Para Thyroid Hormone (PTH) to exist in the body is to control the Calcium level. Calcium is a very important element in the human body. It has a number of uses which I am not going into now. But it is really, really important. So important that there is a small organ (glands, really) that secretes this hormone just to control the Calcium level! The whole mechanism acts like a thermostat. Too little Calcium in the blood, the glands secrete more PTH which pulls out more Calcium from the Calcium stores in the body - the bones. Too much Calcium in the body, the glands reduce secretion of PTH which causes the Calcium from blood to go back into the bones.

Understood?

So, now my PTH has been pretty high. It was almost 20 times the normal in May last year. Guess why? Too little Calcium in the blood, I hear you say, having understood the last paragraph pretty well. Correct! You're getting good at this. Why did I have so little Calcium. Low Calcium dialysate remember?

The problem was we (the docs?) did not think that it was due to the Calcium being low. The blood work showed that the Calcium was normal. Hint: blood tests often don't show things until they're really bad, the body kept correcting the blood Calcium level by leeching my poor bones which shouted out in pain when they could take it no more!

We kept attributing the high PTH to "long term effects of kidney disease". We kept trying to correct it with Cinacalcet, an expensive drug which attacked the symptom (high PTH) rather than the cause (low Calcium). At one point I was taking a whole lot of Cincalcet because of which the PTH did become low but it was a lost cause because the real reason was elsewhere. The moment I reduced the dose, it would rise again.

For the last 15 days, I have switched to a regular Calcium dialysate (a couple of days of high Calcium in between) and was on a high dose of calcitriol for a few days and now back to the regular dose. Guess what has happened to my PTH? Become normal, you ask again, and I commend you on your reasoning! I thought it would too. But hold your breath - it has actually become BELOW NORMAL!!!

My PTH is at 4.7. Gosh, that's really low. The journey from 1015 to 4.5 has been quite a rough one! But, it gives me the confidence that my reasoning was right. We should have stopped using the low Calcium dialysate long, long back. Well, getting the PTH back to normal shouldn't be a problem.

I am really glad its all falling into place!

Why Apple should not support Flash on the iPhone - for now

I had this strange problem in my Cocoa app today. There is a WebView in which I am showing some Flash content (using a third party graph generation utility). Whenever I ran the app, as soon as I accessed the screen that had this WebView, the app would crash!

I used the debug mode and went through the code step by step to figure out where the problem was. Surprisingly, the app worked fine when I was in debug mode! I tried different ways and means of accessing the screen and the content. No problem in debug mode. I then ran the app in Run mode. Crash again!

I was perplexed. What could be the problem? I looked at the logs. There was a "Debugger() called" every time the app was crashing. Since Google is my friend, I used it.

Bingo!

Found the cause. There was a blog post by a Stinkbot that outlined the problem:

"Apparently, in the new Flash 10 release, somebody left a call to Debugger() in the code. This is in the final, non-beta Flash 10. I’d expect calls to Debugger() in a beta, but to leave that in a final release does not inspire confidence in the rest of the code."

I had to tell Xcode, my IDE not to stop on Debugger() (In Xcode, Run Menu -> Stop on Debugger() -> uncheck this). This fixed the problem. Well, a workaround at least.

Steve Jobs has said that Flash is buggy and leads to Macs crashing. That's the reason they are not supporting Flash on the iPhone and the iPad. I can see what he's saying. I totally agree with him. Heck, even Jayadeep Thum (who has nothing but disdain for Apple and anyone else who makes money out of writing software, ok, ok just kidding JD!) has said, "I am with Steve on Flash. Flash is buggy. Especially on Linux. Adobe should fix it."

NxStage arrives in the Middle East

I was thrilled this morning to learn that NxStage through their partners Kimal are launching the System One, a portable hemo dialysis machine in Dubai and Saudi Arabia. Bill Peckham wrote about this here.

This is excellent news. I have been waiting for this machine to be available in India. It is now available in the US, UK and the Middle East. India shouldn't be too far behind, I am hoping.

There are two barriers to home dialysis in India - costs and perceived risk.

The cost of dialysis and the fact that a large number of people have to pay for their own treatments might dissuade someone from introducing systems like this in India. Costs, however are not a problem for some segments of the population. When you look at the size of the population, even a small percentage of this is good enough for a large number of potential home dialyzors.

The second and more important barrier is the perceived risk of dialysing at home. I say 'perceived' because dialysis at home is typically done more regularly and for longer hours. This makes the dialysis process more gentle and less risky. Less fluid is removed, the flow rates are less and the chances of any serious problem arising gradually diminish.

What is needed is patient education. Patients and their families must be educated on the benefits of more frequent and longer treatments. When they see (and feel) the benefits, adoption cannot but be widespread.

I am now hopeful that NxStage will bring the System One to India sooner rather than later. I'm keeping my fingers crossed!

Is there such a thing as too much Calcium for me?

Ok, so if you've been following my bone pain thread, you know I figured out that my bone pain was due to the low Calcium dialysate I was using in error. And that the Calcium was being pulled out from my bones continuously over the last few months.

I switched to regular Calcium dialysate (3 mEq/l) last Thursday. And I used a high Calcium dialysate (3.5 mEq/l) on Tuesday and Wednesday. I have also doubled my dose of Calcitriol to 0.5 mcg/day. All this without my nephrologist catching a whiff of what I was doing! Now, don't get me wrong. He's a very nice person (and if it wasn't for him I would not be living today because he suggested nocturnal daily home hemo to me). The only problem is he is a little less aggressive, imho. He would rather let the symptoms of bone pain go away slowly than try something aggressive and risk extraosseous calcification (calcification of the arteries and veins due to excessive calcium in the blood - turning to stone in common parlance).

So, I am trying this experiment myself - with only friends on the internet (including one very helpful nephrologist from Australia) to guide me. Risky? Yes. Can I help it? No.

So, a whole lot of Calcium was being added to my blood, especially over the last couple of days. Because of this, there is some good news and some bad news. The bad news first - my Calcium has skyrocketed to a whopping - hold your breath - 13 mg/dl!!! Normal is 8.5 to 10.1 mg/dl. I remember my nephrologist go ballistic when my Calcium had become 11.5 mg/dl a couple of years back. He almost threw a fit and broke into a sweat and had me off anything that even remotely looked like Calcium! In fact that is when the whole 'low Calcium saga' started (I'm sure you know about this unless you have joined the party late).

Coming to the good news - my bone pain is getting - hold your breath again - better. Yes, you read that right. BETTER! Which is difficult to believe. I had thought I would have to go through life with this pain. I had started thinking about the deeper meaning of life (can you believe it?). I even wrote depressing posts about life expectancy and what have you!!!

Before you get carried away - its not gone. Its got about 10-15% better, that's all. But that is big. The pain was increasing with time. At least now the reversal has started!

Which brings me to the dilemma I am faced with currently. Should I continue the high Calcium dialysate, try to get rid of the bone pain real quick and risk a high calcium and extraosseous calcification or switch to a regular (not low) Calcium dialysate and hope that the bone pain resolves slowly?

Not a nice dilemma to have!

Coorg calling - some pics

At Wonder La, the water park on the way from Bengalooru to Coorg

Abby Falls, Coorg

The Stream by the falls

Coorg calling - Coffee, cardamom and more

The road to Coorg from Bengalooru is good until the last stretch of about 25-30 kms. This stretch is not a road - it is a test of your nerves and your driving skills. It is also a test of how lucky you are. They are supposedly building / repairing the road. This has caused the entire stretch to become full of ditches and stones. We reached the Club Mahindra resort at Coorg around 9:30 in the night after a grueling drive through this stretch.

We had dinner at the Green Cardamom, a restaurant in the resort. There was a huge buffet of Indian food with a wide variety of desserts. After a sumptuous meal, we went to our rooms and retired for the day.

One thing we had decided was that we did not want to see a whole lot of places. We were, after all, there for only two nights and a day. We wanted to relax rather than pack in too many things. Most hill stations are similar - a sunrise point, a sunset point, a lovers point and a suicide point! The key is to enjoy the weather and basically not do too much.

The next morning, we got up, performed our morning ablutions and then went to the restaurant for breakfast which too, was very good. A wide spread. Tasty food. Some great coffee. We then took a hotel jeep to the Abby Falls - a waterfall about 8 kilometers away from the resort. The jeep stops on the road and you have to trek for about 15 minutes through a track that has coffee and cardamom trees along it before you reach the falls. Unfortunately there is no access to the base of the falls. So, you can merely see the falls from a distance.

After this, we went to another waterfall. This was much better. The jeep goes through a bumpy track in the middle of a forest and then leads to an opening in the fields. From here, a five minute trek takes you to a splendid waterfall with clear water. This waterfall is accessible by foot. We quickly changed into our swimming gear and went right up to the base of the falls. We enjoyed ourselves thoroughly. The water was very cold.

After about an hour or so of playing under the falls, we changed and got back to the resort. We then lazed around in different parts of the resort - inside the swimming pool, the coffee lounge and our room. Dinner was huge again. The next morning, we breakfasted in the resort again and left for Bengalooru and then to Hyderabad. The return journey was quite uneventful.

Sometimes I think if it was really worth doing all this travel just for one day of fun in Coorg. The problem is I cannot do more than this in cities where there is no dialysis. As it is, by the time I got back I had put on almost 8 kgs of fluid (shhh, don't tell anyone this and don't embarrass me by asking me about it). To stretch beyond this would be asking for trouble. Unfortunately, places with dialysis centers are not much fun (except Goa).

Which brings me to the question: NxStage, when are you bringing the System One to India???