Saturday, December 18, 2010

Belated Update

Seems like I am in a cycle of updating this blog every 4 months.  I just had a couple of Dr appointments last week and remembered that it had been a while, but surprised that it had been that long.  I see my BMT Dr every two months and my liver Dr about every 6 months.  But when I saw my liver Dr last month, he ordered another abdominal ultrasound and another appointment which I had last week.  The ultrasound showed basically the same thing as last May, though there are some abnormal lymph nodes, Lymphadenopathy.  Both Drs don’t seem to be excited about it though.  Just another disease to add to my list.

My ferritin and iron levels are remaining steady at 41-42 over the last two months.  Normal ferritin levels are 20-300.  My last phlebotomy was on September 23 and it looks like I won’t need another.  I supposedly have Hemochromotosis, but so far my iron levels are steady.

Other problems that I still cope with are sensitive breasts, dry eyes & mouth, fragile skin, pain in my joints and neuropathy in my feet. My toes are always numb and it feels like I have a sock stuck in the toes of my shoes. I still check my blood glucose and take insulin shots each morning for my diabetes.  I also take Creon pancreatic enzymes to aid in digestion  and spironolactone & lasix to avoid fluid buildup. Finally, I am still on 10 mg of prednisone every other day.  Better living through chemicals.

Other than that, I see my eye Dr next week, my BMT Dr in 2 months and my liver Dr in 3 months unless something comes up in between.

I think back over the past 6 years since I was first hospitalized and the 3 1/2 years since my BMT and am thankful to be alive today.  I enjoy the time I spend babysitting my 11 month old grandson and being able to take a nap when ever I need to.  God has kept me around for a purpose and though I could never work at a regular job, I enjoy life and doing what I can do from the comfort of my home.

Merry Christmas & Happy New Year

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.

Thursday, April 22, 2010

Out of blood?

Well, I got my ferritin down to 284 ng/ml this week, but still need more phlebotomies to get down further to 50.  Doctor's new order is to let blood every two weeks, but it is getting slower.  Over the last 8 weeks the rate of reduction has dropped to 24 ng/ml per week.  It was a 55 drop per week during the previous 8 weeks and 76 before that.  Assuming an average drop of 5% per time, it will take me another 34 times or over year to get down to the target 50 ng/ml.  The rate is dropping at an ever lower difference since it is .95x.95x.95...the more I have taken out the less is taken out.  A point of comparison is that the average daily consumption (and elimination) of iron is 50 mg per week, I have about 2500 mg in my body and I have been having 24 mg per week removed.

Then on top of this, my hematocrit of 37.3% was too low to take blood today.  It has to be at least 38%.  My blood pressure was 94/57 which is low as well.  Maybe I am running out of blood!  Actually, my hematocrit was 39.3 on Tuesday at the Dr office so it may just be a variation in measurement or maybe I drank more before my appt this morning than I did on Tuesday.  I have another phlebotomy scheduled for next week so will see how everything holds up.

I also had a special T-cell test this week with a reported Absolute CD4 of 682 which is supposedly good.  This means that I no longer need the Pentamidine nebulizer treatment this month or hopefully in the future.  Because I do not fluid retention problems,  I get to reduce my Spironolactone pills to one each day.  Still taking 9 different pills a day plus an insulin injection.  I have a liver Dr appt on May 11 and will see what he thinks about all these changes.

Friday, February 26, 2010

Routine Status

It has been 2 months since my last status since things have been pretty routine.  I continue to have Phlebotomies every week though now on Thursday afternoons instead of the morning.  This gives me time in the morning to babysit my new grandson (born Jan 10) and then take my nap later in the afternoon.  Otherwise, having the Phlebotomy in the morning wasted most of the day.I take a nap every afternoon since I am also up until 1:30 or 2:00am every night watching the new baby.

I also saw my BMT Dr on Tuesday this week, a full 9 weeks since I saw him last.  My ferritin level is down another 495 points to 475.  The rate of reduction is slowing, now at 55 ng/ml per week instead of 76 in the previous 2 months.  The slowing rate seems natural since the iron is less concentrated, less is taken out with the same volume of blood.  Normal levels are 12-300 ng/ml for males so I may only have another 4 weeks to be back in the normal range.

I also continue to have the Pentamidine nebulizer treatment every month.  A few weeks ago I had a Hepatitis B vaccination and need a few followup shots as well.  I just stopped taking the Leviquin antibiotic so need to be cautious of any signs of bacterial infections.  I was on Leviquin for 8 months after my BMT, then off for most of 2008 and back on it since my hospitalization in Dec 2008.