Rare illness, Lung Transplant May 7

I have been battling a rare genetic disease, “Antisynthatase syndrome” for most of my life. On May 7, 2018, I was  given the gift of life new lungs. My transplant surgeon said he would have given me just weeks left to live if I had not got a transplant when I did.
Antisynthatase Syndrome

Since my diagnosis and as follow up to my transplant I have had regular lung function tests, blood work, CTs, x-rays, and bronchoscopys. Before and after transplant I'v been hospitalized on a number of occasions. The transplant didn’t cure the underlying disease. The disease also causes Myositis, Polymyositis, Dermatomyositis and Raynaud’s. In general I don't feel well much of the time.
Just before the transplant I was using 6-8 liters per minute of oxygen while at rest and 8 to 10 lpm while walking.

The funds from GoFundMe will be used to help pay medical and daily living expenses. I have no income and I cant work right now, It’s been difficult to stand on my own both physically and financially. I lost 30 lbs, mostly muscle. They said 6 months to a year for recovery. Lung transplant isn't a cure, it trading one disease process for another. For the rest of my life I will be monitoring my health and taking medications to avoid rejection.   

I want to live longer and I want to continue to use my life in service of others who are less fortunate

Every Monday, Wednesday and Friday I have Pulmonary Rehabilitation. I'm taking 27 separate medications many more than once a day. I exercise with help from Physical rehabilitation and Occupational Therapy.  Its a battle and at times I have a lot of pain and fatigue. 
I have so many questions over what my future holds, With no income and the small amount of savings dwindling I really am coming to the edge. I pray and I have faith that something will come along. God hasn't failed me yet.

Please keep me in your prayers and share my GoFundMe story on your Facebook. 

I have to remain positive and I will.

Thank you for taking the time to consider helping me :-) Thank you! With all my heart, Thank you!

Dan

Donations

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  • Krunal Parikh 
    • $55 
    • 32 mos
  • David Mullen 
    • $25 
    • 33 mos
  • Caroline Gardner 
    • $20 
    • 33 mos
  • Betty Olson 
    • $64 
    • 33 mos
  • Lori Hanley 
    • $50 
    • 33 mos
See all

Organizer

Danny Esteps 
Organizer
Madison, WI
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