Menu Close

May 4, 2024 – Health Update

On April 30th I made a trip to Emory for a few tests and to meet with the transplant pulmonologist regarding my case and if I was ready to be put on the waitlist to receive lungs. Long story short – they are putting me on the waitlist pending a few minor things.

I’ve realized from the many questions I’ve gotten throughout this health journey so far that my disease, my day to day life currently, and the entire process of seeking lung transplantation is vastly different from what we would all expect the experience of a gravely ill person seeking life saving medical treatment to be like. So I’m going to do my best to answer some of the many questions I get below.

When is your surgery date?

I get this question a lot. The reality is if I survive long enough to receive a transplant, I won’t know I’m getting a transplant until a few hours before the operation. Basically it all hinges on lungs being available that I am a good match for, and me being at the top of the list to receive those particular lungs. Basically I will get a call to come to Emory and I will have only a few hours to get there. I have a number of friends who will be on 24/7 standby to whisk me off to Emory if that call comes through.

And it should be mentioned that even if the call comes and I race to Emory, there is no guarantee that the surgery will proceed. While I am in transit, the doctors there will be evaluating the lungs to make sure they are indeed healthy and a good fit to greenlight the surgery. If not, I return to Athens and await another opportunity.

Once You Are on The List It’s Just a Matter of Time, Right?

No. Once I’m on the list, there is no guarantee that I will stay on the list. I have to do everything in my power to keep my fitness and weight up and follow the directions of doctors. Meanwhile, the disease is still progressing and it is entirely possible that it can worsen so much I will not be healthy enough for transplantation surgery. My entire focus right now is to follow Emory’s directions and try to stay on the waitlist.

What is Your Day to Day Life Like Right Now?

Okay, so no one is actually asking me this, but this to me is the most important thing I have to share today. MY LIFE IS UTTERLY AND THOUROUGHLY EXHAUSTING!!!!

I think the best way to understand what every day life is like for me is to watch any documentary about climbing Mount Everest. As you approach the summit, there is an area called the Death Zone where you have to be on oxygen because the air is so thin and every step forward is an exhausting struggle. I live in a similar death zone and it requires supplemental oxygen just to keep me alive. Without the supplemental o2, I couldn’t even walk a few steps without gasping for breath in a dry land version of drowning. I have to be very careful about everything I do so that I don’t push myself inadvertently into this situation.

Now here is the crazy part. I have to stay as active as I can and need to exercise as much as possible. Keeping my body running as efficiently as possible is my only way of fighting back against the progression of the disease. I exercise at home and I go to pulmonary rehab two days a week. I cannot begin to impart how difficult exercising is for me in my current state. Picture yourself walking on a treadmill but you’re only allowed to breathe through a drinking straw – that might come close. It is mentally brutal and the name of the game is to learn how not to panic and send your o2 needs even higher.

On top of all of this, I still have to go to doctor appts (sometimes 4 or 5 a week!), deal with medical bills and insurance, fight the endless fight to try to get disability, feed and bathe myself, and try to keep up with household stuff as best as possible. I’m also thankfully still working remotely for Blink;Tech who have all been amazingly supportive throughout all of this.

But at this point I’m sure you’re about to ask the following question….

Why Don’t You Ask For Help With Some of What You Just Mentioned?

The reality is that I need to stay as physically and mentally active as I can. I am actually getting a ton of help right now with the very many things I cannot handle and as various chores get harder I will get help with those too. But for me, I need to have to force myself to get up and deal with stuff to keep me moving. Sitting is dying. Moving is living.

I am also clinging to any sense of normalcy I can just to keep me sane. Yes, it’s all a huge struggle, but it keeps me focused on the possible life awaiting me on the other side of this horrible death mountain.

Can We Bring You Food or Cook Something for You?

Earlier on I had a lot of people bringing me delicious dishes and it was wonderful. The problem now is that I need to be in strict control of what goes in my mouth because keeping weight on right now is critical. In the earlier stages of the disease, exercise was difficult so it was hard for me to lose any weight. But all that has changed. According to the Emory pulmonologist, I am burning a massive amount of calories just trying to breathe (my resting heart rate is usually around 100bpm) and I’m basically running the equivalent of a marathon everyday just to get enough o2 in my body.

So, I’m following the awesome guidance of the Emory nutritionist and pulmonologist which is really helping. Being in control of what I put in my mouth everyday is critical right now to getting my weight back up. I’m currently 139lbs – before the disease really kicked in I was 190 to 200lbs.

So hold off on all the fun meals for now. Hopefully there may be some dinner parties or other gatherings in the years ahead.

Can I call So We Can Catch Up?

Right now I have way, way too much on my plate for me to possibly deal with. And when I am not doing something I need to sleep to get my energy back up (I sleep and nap around 10 to 12 hours a day out of total exhaustion). I hate it that I’ve left so many friends messages and texts unanswered, I keep thinking that I will have the time and energy to respond, but I’ve finally had to be honest with myself – and all of you – that I don’t. I can only hope everyone understands who have reached out to me directly with friendship, love, and concern. Every ounce of who I am is focused on staying alive as long as possible right now and there is really not a lot left at the end of the day.

I am surrounded by a small team of friends who are keeping me going through this and if I suddenly get the call that lungs are available, or things change for the worse, they will let everyone know what’s going on. I thank all of you for patience and understanding and again I am sorry I cannot keep up with correspondence – not my usual self at all.

What Can We Do To Help?

Honestly, nothing for now. I have no idea if and how that might change, but for now I have what I need for the most part and am focused on what is directly in front of me. The only real need I have these days is rides to appointments (I can’t really drive anymore). I’ve got a lot of people helping with this, but if I get in a bind I may post on Facebook looking for a driver.

So, that’s really about it for now. Much love to all and thank you all for being there for me. The overwhelming love and support I’ve received throughout this journey is deeply humbling.