A Rough Week

Sometimes it seems like life throws you curve balls, and this has been one of those weeks. It started when I foolishly (again) left my purse in my car during Luke's tennis match down at Barnes Tennis Center. I returned to a bashed in car and a stolen purse, along with many of my other personal belongings. It's hard already, but without an income, losing all that stuff was even harder.

Then our beautiful horse Alexander became sore after a too tough dressage training session, I think. Hopefully that's all it is, but the poor guy is just not right. We were planning our first show on him this weekend, but that's been scratched. :( I am disappointed.

But, the light on my horizon was the thought that I might have found a new, young hunter prospect who looked absolutely perfect. Sold today, of course, and I was to see him Monday.

The last straw was my pulmonary function testing. It put me over the edge today. Cranky all day anyway, and then my numbers are down into the 50th percentiles for the first time. Don't understand, can't explain... don't have any answers but I do have another full week of doctor's appointments next week. Wish I could just walk away from it all sometimes.

Not my week.

Follow Your Passion

I had a lovely "coffee" with a friend today, and she got me thinking about how stem cell therapy for autoimmune diseases began. I came home and found this video on YouTube of Dr. Burt, the man who did my stem cell transplant, discussing how he began his work.

Hope you enjoy it. :) There is a part 2 and a part 3, as well, which you can also find on YouTube.

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. :)

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... :)

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! :)