Where we are after 1609 days of the “Come Walk With Me” fundraising campaign...
My status has changed since we updated you last, and thankfully, for the better. I have been under treatment at Johns Hopkins for 8 months and my doctors believe I am responding to the medication well. And most importantly, I am feeling very much better.
The main aim of my current treatment is to ease my pulmonary function by dilating the blood vessels around my lungs. My condition had made these blood vessels thicken over time, sending my pulmonary artery pressures up to 120 mmHg. In a healthy person this should only be around 20-30 mmHg. My medication has now brought this down to about 90-100 mmHg. It is nowhere near where it should be, but definitely heading in the right direction. Also since my body is used to functioning under such extreme pressures, even this slight improvement has had a significant impact on my quality of life.
But my doctors remind me that this relief is temporary and that the pressures will eventually go up, even with the medication. After all, the medication will not reverse the permanent damage to my heart or lungs. Therefore, despite this treatment buying me some time—5-10 years in some patients —the definitive therapy still remains a heart and lung transplant. However, the positive response has changed my overall treatment plan as follows (updates in yellow).
Thus far, we have not used any funds raised from the public and only hope to use them for the definitive treatment (most probably a double transplant) and aftercare. However, thanks to the amazing doctors here and your prayers and good wishes, I have gained valuable time to prepare myself for that huge leap. Thank you again for your support and for continuing to be there for me.