Monday, February 21, 2011

How to Save a Life

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. :)

Tuesday, February 15, 2011

About A Girl

Had a wonderful evening with my stem cell transplant buddies. After spending a month cooped up together in the hospital, we were looking forward to an actual dinner out! So, we arranged to have our 6 month follow-up visits on the same day--tomorrow--and planned a night out in the big city for tonight.

We went to a fabulous restaurant in Chicago. It was very nice to just sit in peace, eating great food and chatting a bit about our lives "on the outside." Neither of my stem cell buddies has scleroderma, so their experiences have been quite different from mine. (Dr. Burt does stem cell transplants for several autoimmune diseases.) All the same, we have shared something very unique and it was nice to see how well we are all recovering.

I had a lot more testing today and will get my official results tomorrow. I do have my results from the pulmonary function testing, which is stable. That's good, but after yesterday I had even begun to hope for improvement. I'll try not to get too greedy... :)

Monday, February 14, 2011

Valentine's Surprise

I was pretty hopeful that having a heart catheterization on Valentine's Day had to be a good omen. My preliminary results show incredible improvement. I am stunned beyond belief.

My mean pulmonary artery pressure dropped from 26 pre-transplant to 14 today. Normal.

Still lots of follow-up testing to be done tomorrow, but honestly I'm almost numb from the good news. I always steel myself a little, ready myself for that news I've become accustomed to... I'm not sure exactly how excited I can get just yet. But, here's hoping the good news keeps coming tomorrow and I think in time I will figure out the right way to celebrate! :)

Monday, February 7, 2011

One of Us

Someday, the light will shine like a sun through my skin & they will say, What have you done with your life? & though there are many moments I think I will remember, in the end, I will be proud to say, I was one of us.
-Brian Andreas

I attended my first scleroderma support group this past Saturday. It is a strange and comforting and disturbing experience: I see around the room the old me, the present me, and the future me. Kind of "A Christmas Carol" moment. :) But, more importantly, I enjoyed just meeting new friends and laughing about some of the unusual shared issues faced by those with this disease.

I am also a week away from the answer to the question that seems to be most concerning to me of late: what is my pulmonary artery pressure? I will celebrate Valentine's Day with my cardiology team in the cath room and hope for good news there!

Just hoping the weather's not too ugly in Chicago next week... we have enjoyed, as my friend Marcy says, Chamber of Commerce weather the past few days in San Diego. Gorgeous, sunny, crisp and clear. I had a wonderful ride on Xander this morning and was even able to sneak in a little trip to Disneyland with my children, husband and parents last week!

I feel my arthritis slowly but steadily creeping back up on me. I didn't miss it while it gave me a brief respite. Just hoping the big news is good news. Wish me luck!