n=1

I had a great appointment with my favorite physician, Dr. Doug Levin.  He is the Gastroenterologist/Liver Specialist who originally diagnosed the Amyloidosis.  He was also key in resolving the fluid retention problem I had in the hospital.  Whenever the other specialists seem to be tripping over themselves or aren't in agreement with a course of action, I call on Dr. Levin to sort things out and set an effective course of action.

This was just a routine follow-up but I wanted to talk to him about the lower abdominal bloating and the fact that the urine in my protein has been increasing.  The increased protein is scary because that could indicate that the amyloids are back and are causing my kidneys to leak protein.  This has been on my mind since the kidney doctor mentioned an increase in protein on Thursday and ordered tests for Monday that will determine if the amyloids are back.  Yes, the transplant worked but what I've learned with this disease is that it comes back, even after transplant.  The key is how long it stays away.  I sure was hoping for more than 3 months.

Of course, Dr. Levin shined a ray of hope.  He said the increase in the protein was "unremarkable" and its normal for it to vary.  He said I still wasn't anywhere near where I was before.  Mondays tests will confirm its just normal variation.

We talked about the size and firmness of my liver.  I told him its like living with a concrete block in my abdomen.  My liver is so much larger than normal and hardened that its rearranged the organs in my abdominal cavity.  When I asked about my lower abdominal bloating he said, "Your intestines are shoved into your right hip pocket."  So out is the only way for them to go when I eat.

I asked him if there was any cases where the liver returned to normal size and firmness as the amyloids cleared out and the liver had a chance to heal.  He told me that there isn't enough history with amyloid patients living that long to really have any studies that show that.  He said he's treated several amyloid patients during his career "but right now its n=1 and you're the one."

So, I have an upper endoscopy on Monday to see if there is a yeast infection in my stomach and intestines.  Dr. Levin will also biopsy my stomach to see if the amyloids have cleared out.  I'll get the results by Wednesday that will tell me whether or not my blood is producing amyloids.

I was a little freaked out by the prospect of the amyloids returning but, after about a day, was able to find my trust in God and that's what I'm holding on to right now.  Early on, God told me He's got this and He has smoothed every bump on the road so far.  I know He's got this one.