Just an update on my health, both physical and emotional...
I started chemotherapy infusions in January. I recieve IV Cytoxan once a month and have had 2 so far with 4 more to go. The chemo will not cure scleroderma but is the standard care to potentially maintain the level of lung function I have. In November my TLC (Total Lung Capacity) was at about 50% and my DLCO (measurement of gas exchange in my lungs) was at about 35%. We hope the chemo will keep my lung function from getting worse and sort of "hold me over" until I can get a more effective treatment.
The part of all of this that I haven't shared with many people is the challenge of being uninsured. It's a very personal aspect of this journey for me, but is necessary to share so that I can explain the possible treatments for me and the reason I have to wait for so long to get them. The truth is, there is a treatment I could receive that if I survived the process, would likely return me to a completely normal life. Stem cell transplants for Scleroderma patients have shown incredible results in reversing the damage the disease does to ones body. This procedure is still considered "investigational" when used for Scleroderma. There are many research studies that offer stem cell transplantation opportunities. The problem is that because scleroderma is so rare and transplants are so costly, none of these studies are funded and the patient must have insurance, be independently wealthy or be able to fundraise the $150,000 it costs for the procedure. The bottom line is that I may have insurance in 4 months or it could take up to 2 1/2 years to obtain. So my challenge is to find a way to not only stay alive that long, but also to stay well enough to receive the transplant.
So I wait. And I continue to research options to maintain and get any sort of improvement in lung function that I can. Roughly 300, 000 people in the US have scleroderma. About 1/3 of those people have diffuse systemic sclerosis (my diagnosis that includes both skin and internal organ invovlement) with 50% of those dying within 5 years. I am in my fifth year of diagnosis, although the severity wasn't known until just a few months ago. I already feel that I have achieved some victories in this journey, considering I still at least appear healthy on the outside.
Scleroderma isn't something I could prevent or predict. I don't deserve it nor do I have a choice. I don't want pity or attention because of it. I only want understanding and support. I have an incredible amount already. Thank you for that. I'll keep you informed.