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.

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.

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.

Iron Levels Reduced

I am on a schedule of Dr. appointments every two months, but still have a monthly treatment of Pentamidine nebulizer for my lungs.  I had my Dr appt last week and the nebulizer today.  Most importantly, I got the results of my blood tests from last week and my ferritin level was down to 970ng/ml.  Normal is at most 200 and it was 1556 two months ago.  That's a drop of 586 in 8 weeks or 76 ng/ml per week.  This is a little slower than it was earlier when it was dropping about 100 points per week.  I can look for my weekly phlebotomies for a few more months anyway.

The Dr has also reduced my prednisone to 15 mg every other day.  It was 20 mg and will reduce to 10 mg next month.  We will see how I fare at the lower levels.  Last year about this time I was down to 2.5 mg every other day when I was hospitalized with a bad bout of diarrhea and my prednisone was jumped back to 60 mg per day.  Hopefully, I can get off the prednisone and maybe the insulin as well.

ICD

ICD is the common abbreviation for The International Statistical Classification of Diseases and Related Health Problems.  I have seen these codes before on forms that my BMT doctor has submitted to my disability insurance company but just figured out what they stand for.  Full details of all the codes can be found at the ICD Data web site.

In particular, three codes that are used for me are:

Primary - Myeloproliferative Disease 238.79
Secondary - Graft versus Host Disease  279.50
Other - Iron Overload/Hemochromatosis  275.0

If you are interested in looking up other diseases, look at the ICD Index.

Steady State

It seems like I have reached a steady state in my health status.   My lab results are about the same over the past several months with the exception of my ferritin iron level.  Two months have elapsed since my last report since that is the time between Dr appointments with the BMT Clinic.  I did see the neurologist last week for the numbness in my feet and will see the hepatologist for my liver next week.

I still have phlebotomies every Thursday morning as I did today.  The Ambulatory Care Unit measures my hematocrit only to make sure it is above 38 percent.  Last week it was 40.6, but was 38.4 on Monday when I had blood drawn at the BMT Clinic.  This morning it was back up to 41.9.  This may just be variation in the accuracy and techniques used to measure it.

The phlebotomies are having a beneficial effect since my ferritin level is down to 1556.  It was 2234 in August and 2618 in July.  I actually skipped a week in Sept so it still appears to be dropping about 100 ng/mL per week.  At this rate, maybe I will be over this problem in 3 to 4 more months.

My BMT Dr is studying my case further relative to why my iron levels caused cirrhosis of the liver.  An HFE gene which causes Haemochromatosis was discovered last February.  Interestingly, the HFE test was done on my pre-BMT blood which was saved for purposes like this.  The Dr said he has presented my case to other hematologists and thinking about to writing a paper including me as a co-author.

My long term disability (LTD) insurance company is requesting an update on my medical history over the past six months to determine if they will continue the LTD payments.  One these days I may have to find a new job.  My past employer (who still provides health and life insurance) just laid off 350 people so I doubt that there will be a job for me to go back to.  I continue to keep up on information technology through user groups, conferences, on-line webinars and self study.  I could possibly take early retirement, but insurance would be the biggest obstacle.

Lower levels

I have good news that both my cholesterol and iron levels are down. The Simvastatin has taken effect and my cholesterol has dropped from 252 a month ago to 139 this week. There may be some side effects since I seem to have more joint pain.

My ferritin has dropped almost 400 points in the last month, from 2618 to 2234. At this rate it might be down to normal in 5 months though I am not sure it is a linear process. My hematocrit was only 38.8 this morning, just barely high enough for my weekly phlebotomy. It was 40.4 last week so I might have to skip a week occasionally for my blood counts to recover.

On the negative side, I have developed Purpura, purple discolorations that are caused by bleeding underneath the skin. The doctor says that the prednisone causes thinning of the skin and I must scrape the area where a spot occurs. There is no pain and the spots disappear in about a week.

It will be 2 months until my next doctor appointment if all goes well. Other than phlebotomies, I need to schedule vaccinations for Hepatitis B. I probably will not be posting in the meantime. Remember that you can subscribe to be notified of updates; see the lower right margin.