In June of 2017 I made a decision to join a fundraising walk for Scleroderma in support of a friend. You see even though we share this horrible disease, she had seen her disease attach her foot and in short order lose her leg. My buddy, Eileen had the very best doctors at Johns Hopkins and if there was a way to save it I have full confidence it would have been saved.
So when I saw this walk to raise money for Scleroderma was coming up in 10 days in Denver I jumped in once again. I used to support those walks yearly but stepped away for a number of reasons none of which mattered this past summer. I was able to attend schedule-wise and my feet worked and I had both so I decided to walk. Up went the fundraiser page and off I went to walk.
Turns out that act one to support for a friend, changed my life forever. To think I almost missed it. Simple seconds and inches would have made it not so.
At this walk I met a lady who told me about Stem Cell Transplant. You see I was having a bad lung day that day thanks to my lung disease brought on and made worse daily by my Scleroderma. She told me point blank that there was new hope for people like me through stem cell transplant and I needed to check it out. She lead me to Dr Richard Burt at Northwestern Medical in Chicago.
As luck would have it I had an appointment with my Scleroderma Doctor in Denver the following Wednesday. Through many years I have been thought hell and he has been the quarterback of my medical treatment. I asked him if stem cell could help me. He agreed it was well worth a look and went about setting me up with the first official step, the referral to NWM in Chicago.
Next step was a phone call screening that I PASSED then a paper submission of hundreds of pages of medical records. PASSED that as well. Next was to hope a flight to Chicago and endure 4 days of testing. One day I will write the blog about the testing week but for now let me just say, PASSED.
Then the heartbreak. Insurance said NO. Now what? We would of course appeal but what in the mean time. Wait? I had learned in Chicago that Scleroderma had caused the much dreaded heart disease now called PHA. That was not good and both the heart and lung diseases were going to simply continue until I make a drastic change. In my mind and based on 14 years of trying everything single thing else….stem cell transplant is my last hope.
Well I looked at two things closer.
1. I have a successful company that I could do some owner equity to get a chunk of cash out to help but was not unlimited
2. I had retirement accounts and finds in my husbands name that could be borrowed against or used.
I mean whats the point of retirement $ if I am not going to live long enough to use it?
We (my husband and myself) have gathered the $ and are looking to get all the details in place. It is a long long process. We will need additional $ above and beyond that 100K+ for lots of stuff, co-pays, medicine both covered and non covered, personal care, food, travel, some hotels, keeping 2 houses going, the list goes on and on. I don’t want to bankrupt our future but for me, I want a future.