Saturday, August 28, 2010

Delayed update

Just realized that it has been 4 months since my last update.  I should have posted at least 2 months ago.  In the meantime, I have seen my BMT Dr twice and my liver Dr, diabetes Dr, eye Dr and GP Dr once each.

I have also had 9 phlebotomies after reducing the schedule to every 2 weeks.  My ferritin level was 134 ng/ml on June 29 and then 67 last Tuesday. It dropped faster than I though it would.  Since my target is 50, I probably have reached that level with my phlebotomy yesterday.  My BMT Dr has ordered another phlebotomy in 4 weeks and will check my ferritin again at my next appointment in 2 months.  Since I have Hemochromotosis, I have to watch my iron intake and may have to have periodic phlebotomies for the rest of my life.  After 85 phlebotomies so far, I guess I will keep eating my steaks (iron) and bear the needle some more.

I had an abdominal ultrasound in May after seeing my liver Dr.  They still see the liver damage from the iron though everything else looked ok.  In June, I saw my local clinic Dr since I was have pain in my nipples.  My woman Dr examined my breasts and said that I had no lumps or evidence of breast cancer.  At least, I didn't need a mammogram!

Also in June, I saw my diabetes Dr who measured my glucose A1C at 5.7.  This compares to glucose of 126 mg/dl which is about what I measure each morning.  I am still taking insulin shots each morning as well.

In mid-July, I had another bout of diarrhea and went into the BMT clinic with a stool sample.  They found evidence of the Adenovirus which is common in young children,  I possibly picked it up from my 7 month old grandson.  I also had conjunctivitis in my eyes, possibly a complication of the virus.  The eye problems persisted for about a month, so I saw my eye Dr who said the adenovirus can cause these problems which at last seem to be clearing up.  Unfortunately, she also found evidence of cataracts starting in both eyes.  This is a complication of long-term use of prednisone of which I still take 10 mg every other day.

Finally, I am still taking 10 different medications with only one change in the last couple of months.  My insurance company informed me that the FDA had dropped their approval of Viokase and Creon was prescribed instead.  This provides a substitute for my lack of pancreatic enzymes to digest fats.