Aug 5, 2008

Rochester, MN (our home away from home)

i'm writing this from the 5th floor of the Gonda Building here at Mayo- back in familiar halls and waiting rooms. it seems the only thing that has changed since last time we were here is the hall between the Charlton and Gonda wings are now adorned with Warhols instead of Friedlanders. i could go on for pages here about where we are at with a kidney transplant for Dea, but i will keep it brief. many of you have expressed great concern over the past couple of years, and i get emails from time to time wondering how she is doing, so i'll try to keep you posted as best i can when milestones present themselves. today was a milestone.

Dea has been chosen as the first patient for a research study being done by the transplant team here at Mayo. her high antibody levels, which cause a very significant crossmatch obstacle, have made it virtually impossible to find an acceptable donor match. this isn't due to a lack of trying; the incredible friends and family who have stepped forward to be tested over the past two years has humbled us. we can't thank you enough.

having said that, things haven't gone the way we had hoped the past two years. Dea has responded well to dialysis, kept up with her studies, and generally tromped all over the Alaskan wilderness when she gets the chance, but the whole process has been draining. for two years we have been living in this "maybe next week" kind of limbo. most days it has felt like each step forward has been followed by two steps back.

this trip though, we have been met with a new hope. she started a drug today that, the team hopes, will drop her antibody level in relation to a transplanted kidney. this research builds on Mayo's established leadership in the area of crossmatch transplants. the drug, Valcade, has been very successful for cancer patients, and has been used successfully with two other kidney patients in the end stages of acute rejection, but Dea is the first to undergo this procedure as a desensitizing step prior to transplant. this is a big step for donor crossmatch medicine in general, and huge for us, as it's finally (hopefully) a solid step forward to a transplant.

so, this morning she had a bone marrow biopsy to provide an antibody benchmark, received the drug, and is having a stress echo (as i type this). tomorrow she will be back to dialysis and more meetings with the team, followed by more drugs and biopsies for the next two weeks.

we know better than to get too far ahead of ourselves, but just being here, as apposed to out of touch in Alaska, feels like a big step forward.

all for now.

4 comments:

Liz said...

I've got my fingers crossed for the two of you!

Mel Trittin said...

I don't know if you can use the best wishes of a physical stranger but virtual friend from Wisconsin, but you both have them. I think of your work, on the lonely highway that goes to the sparse reaches which takes such courage to travel, as a visual metaphor for the medical road you have and are traveling.

Travel safely.

ben huff said...

thanks guys, we appreciate it.

Pod said...

all the best. you sound very solid

 
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