Monday, May 18, 2009

Self-Confessed Transplant Wimp

Since diagnosis, I have referred to myself as the “Self-Confessed Transplant Wimp”. Just the mention of a stem cell transplant sends shivers up my spine. Over the leukemic years, I have researched and read about transplants, but I tend to spit the information out and never digest it. I have watched other relatively young leukemia patients dive into transplant, only to be dead in a short amount of time. Recently, a man (who I knew from Ohio State) died during transplant. He left his wife and young children. The statistics do not offer much more incentive to sway my transplant intentions.

Do you ever stop to consider what you would do, if you were faced with this dilemma? A typical transplant doctor surmises, “Without a transplant, there is a 100 percent chance you are going to die.” In that context, the 30 or 40 percent chance of transplant mortality or morbidity looks like impressive odds. What a deal!

Then there is the matter of locating a matched unrelated donor. That process has been initiated. My blood was drawn at the NIH and HLA typing will be completed. HLA stands for human leukocyte antigen. HLA typing identifies the specific antigens on white blood cells that will determine if a donor’s stem cells are perfectly matched to my HLA markers. Once my HLA markers are determined, that information will be put into the national database of the National Marrow Donor Program. This will generate a list of potential donors who are a 10 out of 10 match (my HLA antigens match their HLA antigens). Some transplant centers will transplant with a 9/10 match but that further complicates the transplant’s outcome.

IF there are any confirmed matches, then these matched individuals will be contacted. Some may have died or moved. Others may have health challenges that will prevent them from donating. And for others, when the rubber meets the road and they are called upon to be a donor, suddenly that is not an appealing consideration. Unlike organ donations where cadaver organs are often transplanted, the stem cells are harvested from a living donor for this type of transplant.

Once in awhile, I close my eyes and allow my mind to wander to the transplant unit where I’ve survived the transplant and the leukemia has been pummeled to death. For that moment, transplant begins to lure and tempt me to consider. I have had leukemia for so many years, that I cannot even recall life without leukemia, pain or infections. I cannot even fathom life without this daunting invader in my body.

To transplant or not to transplant, that is the question at hand ……

2 comments:

Anonymous said...

(Great) Aunt Stacie,

We just want you to know, in case we haven't said it before how proud we are of you.

We're on your blog all the time, always sending love and our prayers. If any of the three of us ever have to go through anything like this ourselves, we will have already been taught how to hold our heads high and how to believe. You've set the standard for all of us.

You can't see us, but we walk into the clinics, walk into every appointment and curl up with with you all the time.

Love,

Joy, Den and Dekie

Chonette said...

What Joy, Den and Dekie say are also my feelings.
I should be able to say something as I have been there myself, but decisions about transplants are so personal it is hard to push one way or another.
I am only 2 months post transplant so anything could happen during the first year, but so far I have sailed through coping well with everything. I think for what I have been told by consultants and people that know me well is that it helps the attitude of mind we have while going through such treatment, and how well one prepares oneself for such uncertain times.
You are a wonderful person, with a tremendous hability to cope and your faith is admirable.
When I told the transplant consultant a couple of weeks ago, how amazed I was the way I had been through the transplant with so little discomfort, she replied, it was the way I face things and how I also had a tuft time, but to be truthful to myself and others, it has been nothing like the problems I have read others had.
I also think that because I had no fear of death I feel at peace with myself and able to cope.
Over the years I often wondered why you have not been referred for a transplant, I now know and feel, that the experience the medical profession has gained over the past 5 years is amazing, and things are more successful with the Reduce Intensity Stem Cell Transplant than they were before with the more aggressive ones. I know for sure that 5 years ago I would not have been considered for a transplant at my age, where age was not a consideration over the course of last year.
I wish you find the clarity of mind to come to a decision that is good for you.
with love
Chonette