Walking The Thin Man

In May 2005, I learned that I had developed amyloidosis, a rare protein folding disease. This is my story.

Friday, March 09, 2007

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.

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5 Comments:

At 3/10/2007 9:19 PM , Anonymous Anonymous said...

Tony, perhaps try BeneCalorie protein calorie booster. It's low sodium, flavorless and mixes into just about anything. It has 330 calories and 7 grams of protein in 1.5 oz. It's a small serving so you won't feel as full, but you'll get extra nutrition you need.

http://www.walgreens.com/store/product.jsp?CATID=100673&navAction=jump&navCount=4&id=prod386331&ban=bil_prod386331_medicalnutri

 
At 3/11/2007 9:38 AM , Blogger Tony said...

Thank you Lisa... this looks like it would go well with my shakes. I just bought a case :)

-Tony

 
At 3/13/2007 3:11 AM , Anonymous Anonymous said...

Hi tony,my name is jane qu.I am a intern in Beijing China and doing a research on amyloidosis recently.It's a coincidence that I read your story when I search about this disease on the internet.Hope you good luck and God bless you.

 
At 6/06/2007 1:44 AM , Anonymous Anonymous said...

Hi, Tony - Did you try Kashi GoLean powder yet? That's what I've been using in my smoothies for a few years. TJ's has it for $10/can. It does three things for me: 1) good protein source (obviously); 2) fairly good complement of nutrients - vitamins and minerals, etc.; and 3) fairly good fiber source. that last item has been important to me for weight control. Other powders tend to only give you one or two of the three. Best, paz.

 
At 6/06/2007 7:23 AM , Blogger Tony said...

I'm currently taking some Weight Gainer I found at Vitamin Shoppe (don't remember the name), that provides 52 grams of whey protein a serving. And it goes down very smooth.

I like the fiber and vitamin content of Kashi Go-Lean, but I try to avoid non-fermented soy products when possible, as they provide more health dangers than benefits.

-Tony

 

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