Diapers

Things change quickly. At my Dr appt last Tuesday, I had good news about my bone marrow and hemoglobin. Then on Wed, I developed diarrhea. On three occasions before Monday, I didn't make to the toilet in time and had a mess to clean up. I called the BMT clinic on Monday and arranged for an appt at 1pm. Since I was running to the bathroom every 1 to 2 hours, I had to pick up some Depends at the local Walgreens and wear my first 'diaper' in over 55 years. Then at the clinic, the diarrhea held off for 4 hours though I was able to get the lab a stool sample before I left. When I got home the original 1 - 2 hour cycle started again. Seems like it might be easing off some today.

The Dr is concerned that the Graft versus Host Disease (GvHD) may be returning. That was diagnosed in July after I had lost over 50 lbs. I had some diarrhea back then but nothing comparable to this. I have a colonoscopy scheduled for Wed afternoon and have changed some of my medications. Now, I am essentially fasting and need to take 3 different laxatives and get an IV before the colonscopy. I still have an appetite and am looking forward to Thanksgiving dinner.

On the good side, my hemoglobin is still at 13.6 and my platelet and white cell counts are improving. The white cell count was 4.6 (in the normal range), but may have been responding to whatever is causing the diarrhea. Either way that is good since it is responding correctly.

5000 Served

Great news today. I found out that my bone marrow is now 87.6 % from my donor (brother), a big change from the estimate of only 30 % last month. This latest is direct from the biopsy that I had last week, while last month, it was from a blood test. It is possible that the blood test reflected destruction of cells by my old immune system. Anyway, it appears that the problem may be resolved since my hemoglobin was 13.6 today. This is a new high and actually in the normal range of 13.3 to 17.7 g/dL. Unfortunately, my white cell and platelet counts are still very low and I need to be cautious of infections and injuries. Every little bump now causes bruises.

Relative to this blog title, the BMT clinic was having a celebration today of having performed 5000 bone/stem cell transplants since they started with the (world's) first in 1968. I got some cake and a tee-shirt that says "What's in your marrow?" on the front.

Biopsy #9

I had my 9th bone marrow biopsy this morning.  The first was in Feb 2005 and I have had 5 since the first going into the BMT at the end of April.  I won't know the results until next week, but this was one of the easiest.  Each time, I have about three holes drilled in my hip bone, typically alternating between the two sides.  They need about 5 cm of bone marrow that is about 3mm in diameter.  Then they extract 3 vials of blood with a separate needle that does not use one of the marrow sample holes. These holes heal and form scar tissue which make it more difficult during future biopsies.  This was done under just a local lidocaine injection and  no other pain killer since I drove myself today.  It is the aspirate part that hurts the most because of the pressure change within the bone marrow where lidocaine has no effect.

On another note, my blood test today showed my hemoglobin going up to 12.4, the highest it has been since I started recording in June 2005 when I had my first blood transfusion.  For the record, I have had 46 blood transfusions and 93 units of blood, though only 3 and 6 since just before my BMT.  My white cell and platelet count went up a little today as well, though all blood counts are still below normal.  My CMV test from last week was also negative.  I look forward to getting the biopsy results next and seeing where I go from here.

Comment changes

I have been getting a lot of spam comments on this blog (145 just today) so have changed some of the setup. You will have to enter that funny character string and I will have to approve the comment. I have not figured out how to delete comments after the fact so at least this may clean up what you see.

As always, your comments and support are appreciated.

Looking up

I was surprised on Tuesday when my blood test showed that my hemoglobin was up to 11.4 from 10.4 last week. It had just been 2 weeks since it was 8.4 and I had a blood transfusion. Going in, I was feeling somewhat dizzy and tired, but surmised I may have been low on fluids and am trying to drink more. On the down side, my white cell count dropped from 1.6 to 1.4 and platelets from 88 to 64. Both are about half of normal though my Hgb is also still below normal as well. The Dr took me off of Acyclovir and Bactrim DS and reduced the prednisone to 40 mg every day.

I have my 6 month bone marrow biopsy on the 7th and the next Dr appt on the 13th. Hopefully, we will then know more details of how the engraftment is progressing. I had blood drawn for a Cytomegalovirus (CMV) test as well.

Other than that, I am feeling pretty good and getting things done around the house. I was also approved for Social Security Disability (SSD), though that payment will go to Aetna insurance to offset my long-term disability payments which are now being coming through. It is rare that anyone is approved for SSD on the first application and it normally takes 2-3 months for a response. I must have impressed them with my medical history.