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Monday, March 3, 2008

Day +54 Tac Reduced, 100% Green, Donor Thanx

Doing very well thanx!
I've had 3 doctor appointments since my last post. I've updated the blood counts on the right panel of my blog page. Numbers are good. Although it is clear they are fluctuating, the trend for all 3 counts are upwards.

Last week my doctors decided that I could start reducing the immune suppressant drug called Tacrolimus. I'm taking 25% less of it now. This means I get to take 2 less of the pesky little capsules, I'm down to 6 of these now. Actually they are the easiest to take because of the small size and the fact they dont start dissolving in the mouth immediately. The biggest pill I'd like to jettison is the Potassium pill. It is much larger than needed, in my opinion. There are a couple of foul tasting pills that flake apart in the mouth almost immediately. I have to get these down as quickly as possible. Slowly the pills will be eliminated from my treatment.

Another significant development in my little medical saga occurred today when my doctor finally got back the most time-consuming test on my bone marrow biopsy of 25 days ago. The test indicates what percentage of my marrow stem cells are derived from my old stem cells and what percent are of donor origin. The results of my test are... 100% donor origin! Yay! The doc said this is why they put me through 'full chemo conditioning'. If they had done a reduced-intensity, or mini transplant, then my own stem cells would still be in there competing for resources. And, as I found out the hard way, faulty stem cells have an advantage over normal stem cells and will eventually win the resources battle. So, taking the full prep chemo route to transplant was so veerrrryyy not fun, but the decision is now paying off. My old faulty stem cells are totally gone and the donor cells have become my own. My new cells are now cranking out normal baby cells just like the stem cells of most every other mammal on the planet.

Today in San Diego was a day without clouds. On our walk, my Dad and I visited a hilltop a mile away from my house. The hill is really a huge flat, graded 20 acre pad in the high foothills of Black Mountain. The pad will someday provide the equal but opposite force needed to keep future parks, homes, and businesses, that will be resting on it from crashing to the center of the earth as a result of Earth's gravity. The open-hills view to the North towards Palomar mountain was remarkable. This is the truly the time of year in San Diego that touches the hearts of people who grew up in the Midwest. Everything is green. Think 'The hills are alive with the sound of music'. For a few short weeks green dominates the landscape. Green rolling hills. Maybe I've been looking at the Windows XP default screen background too long, but it's invigorating to me to see because the green surrenders to brown for the entire rest of the year. By May we will have brown and mauve rolling hills of dry sage, tumbleweeds, deer brush, and laurel sumac. Enjoy the green now while it's here. Get outside, go hiking, chew on a blade of grass.

Last week I wrote my donor a thank you and update. This is kind of interesting. The organization that manages the donor/recipient relationship is called the National Marrow Donor Program (NMDP). The donor's real name and address is only known to the NMDP. Once the donor donates their stem cells I am pretty sure there is no mechanism in place for the donor to know what became of his/her donation. The donor and recipient are allowed to write each other indirectly. Any communication is read, screened and edited by the NMDP. So I had to address my one page printed letter to 'Dear Donor'. I had to sign the paper with 'Recipient'. There must be no identifying personal data in the letter. That is, the donor may not know my name, address or even what city I live in. I guess the NMDP is trying to protect the donor from vindictive members of the recipients family and/or lawyers should things not go well. After one year the NMDP will allow the donor and recipient to communicate directly if both parties approve. For the time being I am known as 'Your Grateful Recipient'. In the letter, I summarized the excitement we had on day zero when we got his cells and how well since then his cells have apparently grafted in my marrow. I thanked him profusely and was sure to point out that however things go for me from here on, his generosity has made many people very happy, especially me and my family. I'm going to continue to update the donor every month as long as I have good things to report. I'm going to be tactful and not report to him any issues I may develop with GVHD in the future. I would not want him to feel responsible.

Your Grateful Blogger

5 comments:

Anonymous said...

ROCK ON... I love to hear all the good news. I am gald you are doing well and able to get out and about! Thank you for still to this day keeping us updated. I love to hear all the good news! Take care
LOVE ALWAYS
Shelli

David and Cassandra said...

We are all so happy to hear things are going so well and you are able to get out and about. I am so excited to see you guys in the near future. Weather its a trip to Cali with the new little one, or at the family reunion wherever and whenever it might be.

Cassie

Duane said...

100 % donor engraftment! Excellent news, Jim.

Please let us know when you hear back from your donor. The gift of donation is a wonderful thing, isn't it?

Stay well, friend.

Anonymous said...

Jim,
I just found your site as a link on the MDS website. My husband was just diagnosed and has MDS RAEB-2 with significant chromosome damage. He will have a cord blood mini transplant, since we can't find a donor. We were wondering how old you were when diagnosed and if you had chromosome damage. You are an inspiration to us. Every day is a gift from God. Enjoy your gifts!
Bev

Anonymous said...

Amazing Jim. This is great news. 100%!!!!! Can't get any better than this!!!!
June