The Treatment, the Coast and the Diet...
My course of treatment, which ironically was first developed by Dr. Fauci, involved chemotherapy (yep, more chemo) and very high doses of prednisone. Fauci was the one who figured out combining chemo with prednisone. Prior to that, the mortality rate for GPA was quite high (upwards of 90%).
I tolerated the chemo ok but struggled with the prednisone. I could barely function. I think I was at 70 mg per day. And what I hated the most, was the “moon face” a side effect of the prednisone. I was unrecognizable. Hated this more than losing my hair from breast cancer. Somewhat lucky, the chemo cocktail for GPA was different and my hair thinned instead of losing it again.
My GPA diagnosis has been a conundrum for my doctors as I am not what they call “textbook”. I don’t have a lot of the typical symptoms associated with the disease. Until this day, St. Mikes, a teaching hospital, sometimes uses me as an example for their residents, explaining the importance of just not relying on a textbook for diagnosis. For example, there were certain tests, earlier on in my illness, that had they been done, may have saved some of my kidney function.
The treatment for me was successful and for the next 10+ years I “coasted”. I had regular doctor’s appointments and my kidney function appeared stable – it was never going to get better but at least it was not getting worse. They said I had about 10% of kidney function left, which I learnt one can survive on with medication and the oddest of diets.
I was on what we joked was the Fruit Loop diet. Everything one would normally steer away from as it is pure sugar, was good for me. Anything remotely healthy, like grains, nuts, seeds, anything high potassium (i.e. tomato, bananas, etc) was off the table. When my kidney function started to deteriorate (I’ll get to that in a bit) anything with phosphorous was also eliminated (all dairy, processed food, etc) and protein was limited to what I could fit in the palm of my hand.
Somehow I figured out meals that worked for me. Lots of chicken, pasta and white rice. And of course, unlimited sugar!!!! Suffice it to say, I could eat my way through a candy store!!
And, if you think my diet couldn’t get worse, in the last 6 months or so, I was also put on a high salt diet. Think Cup a Soup and sour pickles. They are now part of my daily diet.
For those who don’t know me, you would think I would have gained all kinds of weight. But surprisingly, I am lean. It’s the hollow leg thing…….