Saturday, January 12, 2008

Transplant Decision

I had my appointment in St. Louis this week and was able to get more information regarding the transplant decision. As you will recall, I went to the university of Chicago last week for a second opinion. They told me that based on the genetics of my Leukemia that I should have a transplant. They felt that I had a high risk of recurrence without the transplant. I went to St. Louis at Barnes hospital to discuss the option of transplant this week. Here is what I found out.

In order to do a transplant you must have a donor. If you have a living related donor the success rate is the best. If not, there is a national registry of people who are willing to donate. In order to have a good outcome from an unrelated donor, the patient and donor are tested to see if they are compatible. There are ten points that are tested in the screening program. They will not do a transplant if less than nine points match. My bother was tested and he is not a match. This week I was checked against the national registry and found to have three people who are 10 point matches for me and several more that are nine point matches.

I also found out that when a patient is prepared for a bone marrow transplant, there are medications given to increase the chances that the bone marrow will take. There are medications given to everybody that decrease the immunity so that the transplant will take.
There are also medications considered for treatment of the leukemia. If you have a complete remission and good prognostic factors they usually only give you medications to decrease the immunity. If you are in remission but have poor prognostic factors they give you medications to fight the leukemia as well as decrease the immunity. This has more side effects that the first one but not as much as if you are not in remission. If you are not in remission, they give you strong chemotherapy to fight the leukemia as well as medications to decrease your immune system. This causes more side effects and is riskier. In addition to that, the transplant is less likely to take.

In my case they want to give me the middle version. If I take three rounds of chemotherapy and wait to see if the leukemia recurs, I would have to take the stronger treatment with more side effects. If I do the transplant while still in remission, I take the middle form of treatment with less risks. Therefore I have decided to do the transplant as soon as a donor can be found. I will be going back in the hospital in Springfield on Monday to take another round of chemotherapy to keep the leukemia in remission until I can be transplanted. It took 23 days to get over the chemotherapy last time and I think it should take about the same this time. My next appointment is February 13 in St. Louis. Hopefully I will have had my chemotherapy, recovered my counts and returned home before that appointment.

God willing, one of the three donors who are 10 point matches will come through for me. I believe the next step is for the three donors to be asked if they still will be donors. If they are still willing, they must be tested to be sure they are healthy enough to donate. This can take 6-8 weeks or more. If all goes well, I will have the transplant during the last half of February.

When I have the transplant, they expect me to be in the hospital about three weeks. I then need to be near the hospital for the next week. They want me to stay in the area till my follow up one week after discharge. I will be on anti-rejection medications for about three months and then they can be weaned if I am doing well. If all goes well, I will be able to return to work after that. I have to start slow when I go back but I should have no permanent restrictions other than to keep from overdoing it. That may be the hardest part for me.

The other potential problem is that Blue Cross/ Blue Shield has not approved the transplant at this time. I have to do several tests before they will consider approval. I have had to undergo heart and lung testing and numerous blood tests. This week I also underwent a psychosocial evaluation as well. The insurance company also refuses to pay for the donor screening tests. I am told that with three donors this will cost anywhere from $5000 dollars to $30,000 dollars.
I applied to a fund to help defray some of those costs but I will not find out till next week if I am approved or not for the funding. Hopefully, the insurance company will approve proceeding with the transplant this next week as well.

I was lucky enough to be home while my sons were home from college. We had a good time and played many games and spent quality time together. Jon went back to Colorado December 31 and David went back to Law School on Friday. Daniel will be returning to college on Sunday afternoon. Teresa and I will miss them all very much. Michael is still at home and Kimberly and her husband Jeremy are still here in town so we can still spend time with them and our grandson Ian.

I asked God to help me make a decision about the transplant and after these appointments the last two weeks I am comfortable that I should proceed if I can find an appropriate donor. I still need your prayers that this round of chemotherapy will go well and that all goes well in arranging the transplant. I have gotten this far thanks to your prayers and God's will. I will continue to try and trust in His will for the rest of my treatment. May God continue to bless all of you! We are sorry we did not get this post done sooner, but we didn't get the rest of the answers we were waiting on until late yesterday. I am planning to start up a daily post again on Monday. Thank all of you again for your continued prayers.


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