Wednesday, February 18, 2009


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.

Wednesday, February 11, 2009

More diarrhea

I had my scheduled appts with the BMT Dr and the liver specialist yesterday, but not before having to go in last week. A week ago on Feb 2, I developed diarrhea again, though not as bad as before Christmas. I suffered for 3 days without leaving the house before calling the clinic on Thursday. On Friday, I brought in a stool sample and had an IV to replenish fluids. The diarrhea had let up by Friday, came back on the weekend but has been ok since Monday.

At the appts yesterday, the results of the stool sample were negative for viruses and I received my now monthly Pentamidine nebulizer treatment for bacterial infections (instead of the Bactrim). My fluid retention has reduced and I have lost 20 lbs since December. Bloods counts are good with the exception of the liver functions which seem to be improving some. I also had a methylprednisolone IV which will be repeated every week for 5 more weeks in an attempt to knock out this GvHD which is suspect for the diarrhea. The regular prednisone tablets have been tapered more to just 30mg per day. This extra steroid is the probable reason that I am writing this at 3:30am though I was out of the house for almost 12 hrs yesterday. I also took a side trip to St Paul, had dinner and attended at a NATT meeting in the evening without coming home in between.

The local NATT Stop the Clot meeting last night featured presentations by Sanofi-Aventis (makers of Lovenox) and Sigvaris. The first presentation stressed that March will be DVT Awareness month and that more people die of DVT/PE each year than from breast cancer and AIDS combined. This is important to me since I had at least 5 pulmonary embolisms 4 years ago and by the odds should not be on this earth today.

Sigvaris makes support stockings which are important to the prevention of DVT. These are commonly referred to as TED hose like they give you in the hospital for knee surgery. But I learned that "TEDs are for beds" and not for general long term preventive use, at least for those that you take home from the hospital. Sigvaris makes specific socks that fit and look better for everyday use. They are constructed to provide different presures dependent on your needs and variable pressures with more at the ankle than at the knee or thigh. A good guide to how the venous system works, their products and what you can do can be found here.