Dear friends,
I apologize for doing a terrible job of keeping everyone up to date with my struggles. Quite honestly I didn’t foresee just how difficult fighting this disease would be. I have a lot to say here, which I’ve been working on for quite some time, but I’ll cut to the chase:
Emory has turned me down for lung transplantation.
Currently my awesome care team is helping me see if there is an option to move to another transplant clinic. This is basically a Hail Mary at this point, but it is a possibility. All of my very limited energy needs to be focused on this now, so please forgive me if I’m not responsive to calls and texts. Information overload has been a huge issue throughout my illness. Hopefully what follows will answer any questions you may have.
The reason I ultimately got turned down by Emory was that the disease has progressed faster than the incredibly slow transplant listing process. In my last round of testing they were concerned about my level of fitness and ability to physically handle the operation.
My experience all along with this disease is that medically things move much slower than the disease. The lack of any sense of urgency has been maddening. I first sought medical help with this in early 2021, sure even then it was Idiopathic Pulmonary Fibrosis since my symptoms were the same as my mother who passed away from the disease in 2002. Here we are three years later and all I have to show are literally hundreds of medical test results and very little else.
The past year has been so insanely difficult. For most IPF patients it seems it’s just a matter of getting enough oxygen – with enough supplemental o2 you can lead an incapacitated but somewhat capable existence. For other patients, like myself, the lungs become so stiffened with scar tissue that not only is there the issue of getting enough oxygen, but also the tremendous muscle strain of physically trying to make the lungs work. The simplest tasks become monumental obstacles and I live in a perpetual state of exhaustion just trying to breathe. The doctors basically describe it as being similar to running back to back marathons every day just to stay alive. My normal resting pulse rate during the day now is around 110 to 115 bpm.
I also struggle to keep my weight up (I’m currently down to 137 lbs) and have to be careful what I eat to make sure it is calorie dense enough to be worthwhile. Btw – I am good on the food front and currently following a specific diet with my care team that is helping me keep my weight stable. So no needs whatsoever there!
On top of all of this I have had to follow an exercise regimen in pulmonary rehabilitation to try to keep my body in shape. If you couldn’t already guess, exercising when your lungs are two hard lumps that barely work is it’s own special kind of torture.
This is an insidious disease and having it is an indescribable hell, not unlike an Edgar Allen Poe story. It not only severely limits what you can physically do but also drastically affects your ability to communicate. Having to constantly catch your breath means not having anything left over for talking or focusing on the most trifling of tasks. This is particularly frightening when there is an issue with my O2 supply and I need help.
For the most part right now I am not in need of anything other than finding help from experts in health insurance and financial assistance programs available to transplant patients. Going out of state for a transplant may not be an option with my current insurance and that may be the first and biggest hurdle.
Again the window for me being physically able to restart the transplant process up with another clinic is closing rapidly, so for now 100% of my focus needs to be on that. I’d love to have the time and energy for things to be more social but I simply don’t have that luxury right now. I’ve so appreciated all the help, support, and encouragement, especially from my local care team. I didn’t foresee me lasting this long a year ago and I owe it to them for keeping me around to continue fighting. It’s been a exhausting battle but I now have to pull myself up off the ground and fight some more. Keep me in your thoughts.
Much love to all,
Greg