Thursday, June 28, 2007

Day + 51

I was to the Clinic twice this week, once on Tuesday and then today. On Tuesday, we learned that the endoscopy showed no GvHD in the upper GI tract but I was still having some diarrhea so I was told to obtain another stool sample. My hemoglobin was down to 9.1 the lowest it has been since before the BMT. My creatinine level was very high reflecting lower kidney function so I also received some IV fluids while at the clinic. The Dr also dropped the GenGraf for a few days and lowered the Acyclovir.

So today I received 2 units of blood (rbcs) and some more magnesium. My creatinine was down and I have had little diarrhea so was not able to get a sample. The Dr has now restored the GenGraf at a lower level and the Bactrium which I also did not take this week.

I was tired due to the low hemoglobin the last few days but my digestive system seems a little better. We are in a period of balancing the side effects of the medicines versus the benefits. Drs say the fluctuating hemoglobin is still ok this early in the recovery, but I worry that my old autoimmune system is still in effect.

Hope to learn more next week after another bone marrow biopsy on Friday July 6 plus a regular appt on Tuesday July 3. There will be no time off on the 4th for me; I will be here popping about 30 pills a day.

Friday, June 22, 2007

Day +45

This is my second report this week in only four days. It has been 45 days since the BMT and possible GvHD is still under investigation. The stool sample from last week was negative, but the results of endoscopy on Tuesday were less certain. I will get a final report on the endoscopy next Tuesday.

I still don't have much appetite and feel nauseated after eating and taking all the pills. I am still fighting diarrhea and urination every hour. I was supposed to have a Dr appt today, but felt weak and tired yesterday so went in then instead. My hemoglobin was 10.7 so no transfusion was required. I did get a liter of fluid while I was there and feel a little better today. My next appt is on Tuesday

Monday, June 18, 2007

Day +41

Hopefully, I can get a status post out more frequently, but it seems like weekly now. It has been 41 days since the BMT and I may be in a GvHD phase now. Last week, I had three appointments and spent over 14 hours at the clinic. Thursday stretched out with a decision to give me fluids and a blood transfusion. My regular Dr is on vacation so the PA thought they could get the blood in before we left for the day. The blood bank reported back that they still needed more time to match my blood because I still have the extra antigens that existed before the BMT. It is unknown whether those will be eventually cleared up. So we were back in on Friday for another 4 hours. Both the fluid and blood have perked me up some over the weekend

There have been no results of the stool sample from last Thursday and I have an endoscopy scheduled for tomorrow. Both of these should answer part of the GvHD question.

Tuesday, June 12, 2007

GvHD + 35

Sorry for the delay in posting but things have been pretty boring. Each day seems like the next, but today may be the start of a new phase. I have been tired recently, napping several times a day or falling asleep watching television. I now see the doctor about twice a week and am gradually reducing medication (now down to about 30 pills a day).

After a shower this morning, we discovered a rash on the inner side of my right thigh. Doctor also ordered a stool sample which I must deliver on Thursday. There has also been some talk about an endoscopy to check my digestive tract. I am still having problems with nausea and lack of appetite and have lost over 25 lbs from what I weighed before checking into the hospital on May 1.

It has been 35 days since the BMT and I am thankful that the new bone cells have engrafted and not all my hair has fallen out. Now it looks like the negative symptoms of GvHD have started.

Monday, June 04, 2007

100% Donor cells

The results of my bone marrow biopsy shows 100% total donor engraftment. The doctor even seemed surprised when he pulled up the results on the computer this morning. This means that my brother's stem cells have taken over and eliminated my old defective bone cells. My hemoglobin reached a high of 11.9 and platelets have increased from 51 to 79 in the last 6 days, more evidence of the new cells. On the negative side my magnesium was down so I needed an infusion today and my creatinine is up to 1.68.

The challenge now is to manage all of the medicines to prevent GvHD (Graft versus Host Disease) as well as getting my normal digestive functions back in order. My weight was 235 lbs fully clothed this morning versus about 248 on check in to the hospital and 266 with the fluid retention and hospital gown. With all the pills and diminished taste and saliva, I still cannot eat normally and feel nauseated most of the time.

But isn't God great! He guided me through the valley of the shadow of death and will continue to heal the rest of my body.

Saturday, June 02, 2007

BMT + 25

Well, its Saturday and I did not have to go to the Dr today. Yesterday, the Dr said that everything was normal, at least as good as expected for me at this time. My hemoglobin and platelets are still below that for an average person, but still where they should be for a BMT patient. Of course, as long as I am taking all these pills, it is a propped up normal. They gave me more magnesium on Thursday but did not need to on Friday. I get the day off tomorrow as well.

The negative of not going into the clinic is that we have to flush my central line at home. Andrew did it this afternoon, but I was a little nervous.

On Friday after my appointment, one of the clinic Drs asked me to talk to a patient who had completed a week of tests to qualify him for a BMT, but was still not committed to moving ahead next week. This young man discovered he had myelofibrosis last Sept. He has an unrelated donor, but is getting a mini-BMT similar to mine. I related my experiences and directed him and his wife to this blog for further details. I also suggested that they setup a CaringBridge site. I gave credit to God and the power of prayer. Please pray for Keith as well since he decided to move ahead with the BMT.