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.

High Cholesterol

As a further complication in my medical situation, I now have high cholesterol. Probably have had it for some time because I just got tested relative to my diabetes. Some of my original MPD meds suppressed it. Anyway, my total cholesterol is 252 mg/dl where recommended level is less than 200. So now, I have an new medicine, Simvastatin , to take once a day. I had to drop my Fluconazole because of serious interaction with the statin. So I keep the same number of pills per day, about 20 with the Viokase which I take with meals. I am now totally confused as to what I can eat and need to plan my diet better.

On a positive light, my ferritin (iron) level is 2618, down from as high as 11,000. The normal range is 20 to 300 so I have a way to go. I had another phlebotomy this morning in a continuing effort to lower the iron in my body. In contrast, my wife has been to the same clinic to get an iron transfusion since her iron is too low.

I have another appointment with my liver doctor next week so should learn more about how I cope with the diet issues between iron overload, pancreatitis, diabetes and high cholesterol.

Back to normal

I have been home from the hospital for 5 days and everything is back to normal, at least the way it was before my bout with the Rotavirus. We even ate out at the Old Country Buffet tonight.

I had a short Dr appt this morning to get labs done and all blood counts were normal. Hgb was 15.4 and Hct was 45.3% so I can get back to my phlebotomies on Thursday. Platelet count was 167 and white cells was 10.9, both right in the normal range. Only my glucose level was high at 136, but that was right after breakfast. Before it was 91 and good.

I have an EGD endoscopy scheduled for Friday and an EMG of my legs scheduled for Monday. On Tuesday, I see the diabetes Dr again. Maybe I will find out if the numbness in my toes is due to the diabetes.

Heading Home

The Drs were here this morning and said that I can go home after lunch. I had to see a dietician and have the IV removed from my jugular vein. I had a little scare after they removed the IV. It seemed like the solvent used to clean the bandage glue off my skin made me light-headed, flushed & hot and cough repeatedly. I called the nurse back, laid down for a while and everything cleared up

I will be on a restricted diet for a few weeks: no fats or lactose. My blood counts are coming back to normal and I have had several normal bowel movements. I am not scheduled to see the BMT Dr again until June 30, but may get back on phlebotomies before then.

I have been developing some numbness in my toes and had to cancel an appt with a neurologist last week. So I need to reschedule that appt and one for my orthopedist. Question is whether the numbness is related to my knee arthritis or the diabetes.

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