Focused on Fortitude: Flolan

Friday, February 1, 2013

Flolan

In case anyone wants to see what I have to do every day concerning the medicine visit Flolan Preparation or, How to be More like Rambo at Leela's The Heart-Lung Thing Blog. She does a wonderful job explaining the steps involved in preparing the medicine, complete with photos.

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Update: On January 20, 2014, I received a double-lung transplant.

By the first year after transplant I was diagnosed with a meningioma (benign brain tumor). The immunosuppresants have allowed it to grow, so I had Gamma Knife radiation treatment.

By two and a half years I have experienced bone loss due to the transplant medications.

I have had several other "bumps" in the road post transplant but I am thankful to be alive!

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I have Pulmonary Veno Occlusive Disease or PVOD, a rare condition that causes Pulmonary Hypertension. There is no way to prevent a person from developing PVOD and there is no cure. The treatment for PVOD is to use a variety of medications that target the symptoms of PVOD. If the PVOD continues its destructive course, a double-lung transplant may be the only option left. But, double-lung transplants are risky. Recipients have approximately a 50% chance of surviving into the 5th year on the new lungs.

I'm normally a relatively reserved person but many people have asked if I can keep them up to date with what I'm going through. Thus, I began this blog.

Just a note: All comments on this blog are moderated. I will not approve comments that are irrelevant or inappropriate.