Living Well with a Bad Diagnosis - Lung Disease

Friday, May 6, 2016

First Appointment at Lung Transplant Clinic

We made it to the appointments on time. First a CT Scan then the meeting with the head of pulmonology to discuss lung transplants. It was so interesting. I learned a bit. It was true that my numbers are still too good. My FVC is actually 47% and DLCO 11. He reviewed my pulmonary function test numbers and showed me the reason why I am feeling the downhill. I have taken a step down in both tests. In HP, rarely is it a fast slide. I am typical: downhill then lots of time of a plateau then a downhill. Rinse and repeat!

He told me that often doctors feel that with the addition of Cellcept or Azathioprine, they decide they can pull back or remove the patient from the prednisone. Big mistake! He said that if a HP person was quickly stepped down or removed from prednisone, they often go into a fast downhill slide.

I asked if I was a typical HP patient with my current numbers and damage to my lungs after having the disease since 2002. He said I was on the far side of the bell curve. That has always been my goal. When told I had limited time on this earth, my internal voice said, "Nope. There is a bell curve and I am going to be one of the few on the far side of that curve." I did it! He also confirmed that all my exercise contributed to my longer life.

We talked about the success of lung transplants. I already knew that cystic fibrosis patients have the longest survival rate but it was heartening to learn that HP patients are number two! It is probably because we do not have the fast slide downhill like the IPF patients. Interesting.

So, after reviewing everything, the plan is to have me complete the non-invasive testing. For example, kidney function, mammograms, etc. If we bump into a problem, it can be addressed before I am in crisis mode preparing for transplants. Smart. That testing should be completed within three months.

Now, the big news, he said that he would estimate that I probably won't have the numbers for qualify me for lung transplants for two to three years. Of course, my plan is to kick up the exercise and make that five to six years! We'll see if I can pull that off!

I wrote a brief history of my journey and summary of the meeting for family and friends yesterday. I thought I would add it to this post for those who are new and don't know my history:
In 2002, i was exposed to an antigen that caused an immune response and slowly turned my lungs into fibrotic tissue, now having difficulty clearing my blood and exchanging gasses. The disease is called Hypersensitivity Pneumonitis. It is the only lung disease you CANNOT get if you smoke. I was misdiagnosed and finally made it to XXX in 2004. By that time, they gave me little hope. I was too far gone. Since that first appointment, I have been fighting back. Besides the best doctor ever and prednisone, I worked out at Pulmonary Rehab twice a week plus another two days in a gym plus yoga plus massive yard work plus long walks along the ocean since 2005. I tried to exercise an hour a day, six days a week. I have been able to keep my numbers up, function in the world, build muscles and lose 100 pounds since 2006, supplemental oxygen is needed only at night and during my workouts. I have lived longer than expected by almost a decade. But, now things are changing.
Michael and I met with the Lung Transplant Clinic head this morning. After reviewing my current downturn in my pulmonary function numbers and a very scary looking CT Scan, they threw me out. I am still too well for transplants. That is good news. Only 50% of the people who have received lung transplants are alive after five years. It is a treatment, not a cure. They estimate that I have another two to three years before my lung function numbers will indicate that I either have transplants or I will die within a short period of time. That is when the transplants will happen. 

Today was a big day for us. We got our lives back again for a few more years. I'll keep pushing myself everyday and we will see if I can postpone transplants for many more years.

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