Success! I am home from Chicago and feeling quite well, despite a, ah, pneumomediastinum as a rather unusual complication of my heart catheterization. Seems to be healing up fine, though!
The best news continues to be the dramatic drop in my pulmonary artery pressure. In addition, however, the CT scan of my lungs also showed substantial improvement. It would appear that the stem cell transplant was a resounding success!
I am quite hopeful that the damage already done to my body by scleroderma can be controlled. My heart testing, in particular my echocardiogram, showed continued decline in the function of my heart. My TAPSE (tricuspid annular plane systolic excursion) has dropped from above 3.0 cm less than a year ago to 1.6 cm on this study (with a level of 2.1 cm in August 2010). This value can estimate right ventricular ejection fraction (RVEF), and a level of less that 1.96 cm correlates with a RVEF of less than 40%. This, in turn, predicts big problems. Also, my right ventricle continues to become more hypokinetic--it doesn't move as well or pump as strongly.
Dr. Burt is eager to publish the findings of his study, and showed me several graphs of his results. The bottom line is that Cytoxan does not seem to work. The stem cell transplant works quite well, but is far more effective done earlier, before Cytoxan, than when it is delayed until after Cytoxan as was my situation. He intends to begin a new trial comparing two variations of stem cell transplant and will no longer use a control arm with Cytoxan based on these results.
How to Save a Life: if you have aggressive, early scleroderma, please talk to experts about getting a stem cell transplant early.
Oh, and try to have some fun in the meantime. Is this horse the cutest thing you have EVER seen? It was so much fun to ride him the other day! And enjoy your friends and your family, and travel often, and kiss your mother with that mouth, after all. :)
Terrific news!! I hope your condition continues to improve and the damage already done is minimal!
ReplyDeleteGlad things are going well. Thanks for sharing the info about Cytoxan and How to Save a Life. It may make a difference for me.
ReplyDeletethank you Holly for your bravery and uplifting spirit as your light shines for those around you and for whom you come across . Great news regarding you venture to Chicago that you shared and I hope to find out something about your heart issues though I know your research etc is tip top , I would feel good about such..if I can.
ReplyDeleteHolly, I was diagnosed with scleroderma in Dec. 2008. I love your blog. Because you are a physician, you answer questions that I want to ask. My doctors seem to feel that the less I know, the better. I have to beg for test results. Please blog as often as you can with details and test interpretations.
ReplyDeleteHolly, do the doctors have a plan for what to do to improve your heart function?
ReplyDeleteIt's good to know that someone out there is reading my ramblings... thanks! I am seeing a heart failure specialist in late March and will let you know if they have any good ideas. :)
ReplyDeleteThank you!! Glad they are on it.
ReplyDeleteI'm SO incredibly happy to hear your wonderful news from Chicago, and am anxious to know what plan they have for your heart.
ReplyDeleteAbsolutely FANTASTIC photo of you up above! Is that Xander? My god, how big is that fence? I'm jealous, as I'm happy getting around 2'6" these days. :)
Lots of love! - Jolie
Hi Jolie!
ReplyDeleteThat gorgeous horse is at our stable, and I had a dream ride on him! Took some pics for his sale "portfolio." Xander photos to come when I have some good ones... horse show planned in late March! :)
I think the fence was 3'9" but I didn't measure... that's what my trainer said, though.
Thanks--your note gave me a smile bigger than the jump!
Love,
Holly