5/26/16 update

On Sunday, we took Jen to Daniel's Broiler for her birthday.  It was a terrific meal, but the best part for me was that for the first time in over two decades, I was able to look at a menu and order what I wanted.  I didn't have to make choices based on diet restrictions.  What a sense of freedom!!  It's a small thing, normal for most folks, but a total treat, a new experience for me.

Tuesday my weight was still falling, at 178 pounds now.  Heidi, The Physician's Assistant, lowered the diuretic dose last Wednesday due to falling weight and feeling that I was 'dry'.  I called in to see if the dose should be lowered even more and the answer was 'yes'.  Good news.  The stated goal is to completely free of diuretics at some point.  The only dose of 40 mgs will be taken in the morning which should help me sleep better, longer between trips to the loo.

I've been walking more and longer.  There have been some four plus mile days in the last week.  1.76 mile walk in one stretch with Mick earlier this week.  I think I'd like to own a 5k race t-shirt, done walking of course.  Seems like a reasonable target, a reasonable goal. 

Today, Thursday, there was another blood draw, another biopsy, another x-ray and a visit with the Physician's Assistant, Heidi.  In that order.

The blood tests were all good.  Heidi commented on a good number for white blood cells and the BNP, an important measure of heart failure, dropping a lot. 

The doctor who did the biopsy said that the pressures were all good and saw something else that had improved since the last biopsy two weeks ago.  She said that the heart was working perfectly, as it should. All good news.

Heidi said that the x-ray showed that the pleural effusion, the fluid around the lungs, has decreased.  I can't see the results online yet.

Tomorrow we will get the results of the biopsy itself.  If we get another good number, the prednisone dose will be reduced more.  The weight loss has been continuing so the dose of the diuretic was also lowered today to 20 mg/day.  Heidi indicated that we might be close to no diuretic.  I won't know what to do, I've been on diuretics for a couple of decades.  We are to monitor the cramping in the legs and little fingers.  A couple of medications could be causing it, and it could be as simple as being dehydrated by the diuretics.  If the cramping goes away in the next several days, it will have been dehydration. If cramping continues, I am to stop taking Fosamax, the anti osteoporosis medication.

There will be a small post tomorrow with the biopsy results and medication changes that result.

John & Colleen