I was back to the BMT Clinic yesterday for my weekly dose of Methylprednisolone, kind of booster IV steroid to knock out the GvHD. It may be working since I have not had any diarrhea the past week though I was already feeling better before my first dose on Feb 10. My prednisone dosage was also reduced from 30mg per day to alternating between 30 and 20mg each day. Since I had both the regular dose and the IV booster, I am again writing this in the middle of the night.
I also had a phlebotomy last Thursday, so my hemoglobin, hematocrit and red blood cell count were still down. Other counts were ok, though liver enzymes are raised, but coming down.
The Dr told me that I have a gene that may predispose me to Hemochromatosis, a condition that affects the absorption of iron. While the main cause for my iron overload and liver/pancreas problems is still thought to be all the blood transfusions, this may be a factor to contend with as well. This gene is hereditary so may have been passed down to my children and may affect others in my family tree.
While I was at the clinic, I also requested that the records department send an update on my medical history over the past couple of months to the long term disability (LTD) insurance company. They are doing a review of my LTD payments for the 2 year anniversary of my BMT in May. (I also requested a copy of the records for my own file since I don't see all of the details through my normal Dr appointments.) LTD payments are about 57% of my last paycheck, but dependent upon whether I am still considered disabled. A portion of this payment is actually through Social Security.
1 comment:
Foods containing calcium such as cottage cheese, yogurt, carrots, etc are great for slowing down iron absorbtion.
Too much iron in the liver is worse than booze.
Drinks that have tannins work very well also. Black tea and my favorite, green tea are very helpful. Most herb teas do not contain tannins.
Vitamin C enhances the absorption of iron. It is wise only to consume a moderate amount and not take Vitamin C tablets. Vitamin C has been known to precipitate heart palpitations in those with hemochromatosis.
The ingestion of black tea has been shown to decrease the absorption of iron. African tea which is becoming popular may contain iron so too much should not be consumed.
Patients with hemochromatosis should not take supplements unless there are documented deficiencies.
In severe HH the disorder manifests as potentially life threatening conditions such as septicemia, cirrhosis of the liver, liver cancer, diabetes, heart failure and heart arrhythmias.
Hemochromatosis sufferrers should drink lots of water every day to keep the blood thin for easier phlebotomies and to keep the kidneys nice and flushed out.
For people who are diagnosed and treated early, normal life spans are possible. If left untreated, HH will lead to critical organ damage and most likely death.
You can find lots of real life tips from Pat at his blog:
Http://ironoverload.info
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