Support Barb's Double Lung Transplant Journey

I am Barb Heenan; scleroderma warrior, wife, sister, aunt, best friend, godmother, cousin, Norwex lover, and future double lung transplant recipient. To say this is the scariest thing I have ever done would be an understatement. I was diagnosed with Limited Systemic Scleroderma in March 1994, at the age of 22. My doctor, at the time, told me that I "might" not live to be 30. That was pretty scary, but it was such a "pie in the sky" statement that my first thought was "Well, that is not going to happen to me." Mike and I set about to make decisions to make sure that was not my fate, and it was not. It has been 30 years since my diagnosis...30 years!

Those 30 years have not been easy years. Scleroderma is a systemic, chronic, auto-immune disease. This means that it affects many organs throughout your body, it is progressive and for some reason, we don't know why, but my body fights against itself every day. There are many different pathways that scleroderma can take and for every scleroderma patient, that can be different. For me, mine has decided to attack the vascular system in my lungs. This is commonly referred to as Pulmonary Hypertension (PH) or Pulmonary Venous Occlusive Disease (PVOD) or Pulmonary Capillary Hemangiomatosis (PCH.) Lots of big medical words which basically mean...I can't breathe.

So this is where we are...I can't breathe. My oxygen saturations drop whenever I am active. There is no medicine that exists that will stop this from happening. I am on supplemental oxygen and there will come a time, in the near future, that there will not be enough supplemental oxygen that I can inhale that will keep my lungs working properly.

Thus...it is time to replace my lungs with a new set.

This new set of lungs will come at the cost of someone else losing their life. Please know that the "heaviness" of this does not escape me. A Double Lung Transplant is a true gift of life.

As you might imagine, a Double Lung Transplant comes with costs. There are medical, travel and many other incidental costs that will be coming with the surgery.

We have no idea when the double lung transplant will happen. We are starting the fundraising process now so that we are ready. Ready for whatever may come and for whenever that might be.

If you feel inclined to donate, we would appreciate your financial donation.

If you are unable to be a financial donor, we would ask that you possibly consider praying or sending us good thoughts.

If you have ever considered organ donation, we would ask that you PLEASE consider becoming an organ donor. There are people like me whose life depends on an organ donor. It is the ultimate gift.

We would love for you to follow my Double Lung Transplant Journey on our YouTube Channel: https://www.youtube.com/channel/UCXO9YZMNhbz_C0gkjqL9C2A

We will be sharing every step of the journey.

If you would rather donate via Venmo, you can do so at: @Barb-Heenan-4