State Of The Fold

It has been quite a while since I reported news on our Folding at Home team. For those of you who are new to this blog, Folding at Home is a research project run by Stanford University. The goal of this project is to discover the reason why proteins fold abnormally in the body. This "folding" is the cause of many different diseases, including amyloidosis.

Because of the speed at which this process occurs, discovering how the secrets of protein folding has been quite difficult. The Folding at Home project attempts to solve this mystery by simulating proteins at a molecular level, then twisting and turning the model in many different ways to get it to fold in the same manner of certain diseases. By understanding this process, scientists can make drugs to stop it, potentially curing many diseases.

As you can imagine, simulating a protein fold is quite complex. It takes thousands of hours of computer processing to perform one. The Folding at Home project is quite ingenious -- it uses the spare computer cycles of people's home computers to do some of this work. Although a home computer is quite slower than a supercomputer, you can do amazing things if you run it on many, many home computers!

People who participate in this project can form teams, in order to promote awareness to certain causes. I created the Amyloidosis Awareness team in late 2005 to help researchers find cures for protein folding diseases. Because of the support of many people, our team has been in the top 500 contributors to the project for the last 9 months.

There has been big news in the project lately. A client for the Playstation 3 gaming system was recently released, taking advantage of its powerful processors. It is said that the folding power of one Playstation 3 is equal to 30 home computers. Wow.

If you have a computer that you keep on all the time, why not do something useful with it? If you are interested in participating in our team, please contact me, visit our website, or click on one of the "Team Tony" links on the right-hand side of this page.

Miscellany

I've been on the Crestor for a couple of days now, and I seem to be tolerating it well so far. Whenever you take a new drug, the docs always tell you about the millions of different side effects it can cause. Since I am a hypochondriac, this is never a good thing, as I wind up experiencing half of them. So eventually I got smart and didn't read the drug information sheets until after I've taken a drug for a while, so I don't make anything up.

But you got to wonder what all these drugs I'm taking are affecting my body and my mood. Whenever I am not feeling good, I have to wonder if my pains and aches are part of the healing process, or if it is just all the drugs in my system.

Taking all of these drugs sometimes
make me a little loopy.

For example, I've had this nerve pain above my left rib cage whenever I stretch my left arm. I had this once before in January, and it went away after a week or so. My intuition is that it is probably trapped fluid and not a muscle strain, since it comes and goes throughout the day. Or maybe, they are swollen lymph nodes. Anyway, I get a lot of these little things which bother me, but go away before you start to get too worried about them. It is nerve-wracking sometimes.

Beware The Ides Of March

It's been a rather rough week -- there have been a lot of personal events recently which have taken the wind out of my sails.

I was completely stunned when I learned that the wife of one of my co-workers was diagnosed with amyloidosis last week. Any time I get an e-mail or phone call from a new patient I take it personally, but this news hit a little too close to home. For such a rare disease, I have been hearing a lot more about it lately. And to think -- what are the odds of that?

The results of the lipid tests I took earlier in the week are in. As I wrote last week, my cardiologist wanted my to retake my lipid test because of my unusually high amount of bad cholesterol. Unfortunately, the results of the retake were similar. Actually my numbers were much higher than the original, which totally freaked me out this morning.

As a result, they have added a sixth drug to my daily regimen -- Crestor. This is to get the cholesterol under control. I am now on three different lipid-lowering drugs. My poor liver. It is very disappointing to get on yet another drug. I thought that I was supposed to be getting off of the drugs by now, not getting on more of them! Unfortunately, it seems that as long as I have protein leakage, I probably will be on some type of medication.

My cardiologist didn't believe that the increase was significant, and as long as it was maintained at relatively low levels, he wasn't too concerned. I will need to come in to Boston Medical in a month to see how the drugs are performing. I would be interested in finding out if there was any relation between my higher numbers and my modified diet, which is heavier on fat and carbohydrates. While I'll still be taking the protein shakes, I will tighten up the other portions of my diet just to be safe. That means no more trips to Starbucks for a while.

Someone mentioned Benecal as a potential calorie supplement. In response, I went on to Amazon and bought a case, which came in the mail the other day. Benecal is tasteless, has a thick, white, coconut oil-like consistency, and comes in 1.5 oz containers. One and a half ounces doesn't seem like much, but each cup packs 330 calories. It works well in my protein shakes, and I don't even notice it. So far, it looks like a good thing.

Of course, not everything has been bad recently. I'm pleased to report that the edema is still under control. No water pills for nearly two weeks and counting. I'm keeping my fingers crossed.

Protein Power

Starting last week I have been increasing my protein intake in hopes that I begin to compensate for the continuing loss of protein from my faulty kidneys. Although I am taking in about 60 grams of protein a day (which is about 10 grams more than a person my size would need), much of it goes wasted. As a result, the protein in my body is quite low (about 70% of normal) due to this damage. I'm not sure if there is a relation, or is if it is just coincidence, but my edema continues to improve. I am now averaging 20mg of Lasix a week (compared to 160mg a day) prior to my second transplant.

Of course, removing all of that fluid has been like removing the plug from a tub of water, and all that is left is skin and bone! Although I have succeeded in getting back my muscle mass, I have lost nearly all fat from my body since I first got sick (about 10-12 pounds, or 9% of my body weight). I am lean and trim, but I could use some meat on my bones. I know that some people would be jealous of this achievement, but trust me, a little padding can be useful -- especially in this chilly New England weather, where the cold, freezing wind goes right through you. When I tell people I've been "chilled to the bone", I mean that literally!

Yesterday's visit to the cardiologist was interesting. As I mentioned a few days ago, my labs showed an increase in cholesterol, which was bizarre since my other numbers looked pretty good. In these tests, it showed a high amount of LDL (the bad cholesterol) , which I've never had before. So he believes that perhaps that those results were a fluke, and he wants me to take the tests again. I'm planning on doing this early next week.

While I was there at the hospital, I paid a visit to the staff nutritionist in hopes that she may be able to find a diet for me which allows me to increase my caloric intake, yet remain on a low-sodium diet. Not easy! After a half-hour of scratching our heads on a strategy, she recommended that I focus on calorie-packed foods such as nuts and yogurt, and that it was okay to increase my protein intake even further to better assist in rebuilding the protein in my body. Since my kidney and liver functions are okay, she gave me the permission to increase my protein intake from 60 grams to 80+ grams a day, and to increase my daily calorie consumption to 2600 calories. This doesn't sound difficult, but it really is with my special diet. And besides, I will have to be constantly eating throughout the day to make this target. Ugh.

Stumbling Forward

Ok, this will be a quick update since I am typing this entry on my phone within a hotel in New Haven, CT. Don't ask. I know my fingers won't last long.

The last three weeks showed another minor decrease in my edema. I have gotten to the point where if I stay on my sodium-free diet, don't sit too long, and if the planets are in perfect alignment, I can go without any water pills for 6-7 days. It's not perfect, but it's a step forward.

I am in the middle of appointments at Boston Medical for a 6-month checkup, and I already have the test results. I was surprised at what they found.

Most of my numbers were getting better - especially my trigycerides, which are out of the clouds and now almost normal (from 750 down to 250). But there are still two challenges ahead. My cholesterol actually went up since December, which I cannot explain. Perhaps it's all that fat in my diet?

But the most depressing news was that there was no improvement in my kidneys in regards to the protein leakage. I found this bizarre since I have made so much progress with my edema. I asked my nephrologist about this, and got this comment:

I can't give you a good answer to your question, but I can tell you that we have seen improvements in edema before seeing improvements in proteinuria. And, in general, I have been impressed in this disease by the lack of a clear relationship between the amount of proteinuria and the amount of edema. There are patients with small amounts of proteinuria and lots of edema, and patients with lots of proteinuria and very little (or no) edema.

So it's too early to tell at this stage what will happen, but I have hope that it will eventually fall in line. I have officially started taking 1000mg of bromelain a day to see if that will hasten any improvement. You might remember last month when I talked about bromelain, and how there were some studies saying that this enyzme is effective at removing amyloid deposits. Hey, I've got nothing to lose!

Well, so much for short. Next stop is Thursday to the cardiologist to see how he interprets my lab results.