One Week In……..

Whoosh, puff. Whoosh puff. Whoosh puff. It’s the sound track of my life these days. I’m constantly tethered to either “Stanley” or “Cookie”, my two oxygen machines. This is sound I hear 24/7.  Whoosh, puff. Whoosh, puff. Whoosh, puff. Since we are constant companions, naming them seemed the right thing to do, and for those that know me really well, I tend to name inanimate objects in my life that I use constantly. My car is Steely Dan, my truck Sallie, so on and so forth.

me with Stanley (blue) and Cookie

The irony of being on oxygen is that as much as I loathe being tethered to a machine, I feel so much better! Truth is I have been hypoxic (living with a sub-par level oxygen in my blood stream) for years. It’s sorta been like I’ve been living on top of Denali with a blood saturation level about 75, instead of in the 90’s. I had actually forgotten what feeling good feels like.

Almost everyone I’ve talked to recently on the phone says “you sound so much better, like you used to.” My energy is back, I’m thinking more clearly and sleeping better.. This gives me hope about my future with new lungs when I can properly breathe on my own again.

So I’m 3 workouts into the required 23 sessions of this pre-hab phase. Doing 5 sessions a week, I could be complete with this phase and “listed” in a month. Being listed is when I am placed on the national registry for donor lungs. I’ve been told by Duke to expect a 2-3 week wait once listed before they have sourced lungs that are the right blood type, tissue type and size for me.. What’s a bit anxiety causing about this waiting period, is once I get “the call”, I have only 2 hours to show at the hospital ready to jump on the table for a 10-12 hour procedure. It gonna get real very quickly! Of course I won’t remember a thing about the surgery but then the arduous task of recovery begins.

walking lap after lap at pre-hab on 15 litters of oxygen

Friends have asked me if I’m afraid. Of course, I have some fears about the process, this is some serious shit I’m undertaking. It’s a huge task, but I can rely on my past life experience how to get it done. Just do the next step, the one that’s in front of you. For me, right now, that is go to the next workout and to do the daily home exercises to strengthen my swallowing muscles. It’s when I think of the entirety of this ordeal that it becomes daunting and scary.

I’ve had lots of helpful conversations with members of the transplant team. One was with Benton, a Duke psychologist. We talked about the transplant surgery and he shared with me the most difficult part is the waking up afterwards. I will be intubated for starters. I’ve experienced that once before and all I can say is it is like having a garden hose shoved down your throat. Not fun! He was very frank and said “it can be really rough but you have to keep in mind it only lasts 3 days. Most people hallucinate, and time passes very slowly. Sleeping will be very difficult.” So am I afraid? Yes, this part I fear. The rest I feel like I can handle, and I know I can handle this as well, but am not really looking forward to it, only to it being in my rear view mirror. Benton did give me a great suggestion. He encouraged me to make copies of photographs of people and places I love and have them all over the room, so wherever I look there is a good image for me to enjoy. Peter and Edie Jackson have hooked me up with a nice speaker and lots of music so I will make it through. It is only 3 days, and then it will be downhill sledding from there.

The only other fear I have is how the whole Covid-19 pandemic could possibly effect me and this process. I suspect if we stay on track, I could be kept in the hospital for a longer recovery stay. They tell you to expect three weeks, but someone was released yesterday after 50 days. They will give me very strong immune system suppressing drugs post-surgery to effectively shut down my system. Unfortunately, my cells won’t be able to differentiate between the lungs there to help me and the Covid virus. For the short term, my immune system will be will be put to sleep, so I will likely be required to stay in a “clean environment” for an extended period. It’s mildly distressing to think about, but I’m not in control and just need to let go of wanting to be. If I’m in the hospital for six weeks than I should be caught up on my reading and podcasts. I invite you to leave me your best book and podcast suggestions in the comments.

Its Sunday morning as I’m writing this and there are no workouts on the weekends. We had expected to use the free time to enjoy the full Durham experience. Stroll in Duke Gardens, take in a Durham Bulls game, take Mo to the Life Science Museum and enjoy all of the great shops and restaurants this great Southern town has to offer. Well that’s not happening.

Hunkering down like we all are. So I want to say thanks to all of you that have been in touch, left comments and are sending me good thoughts, prayers, Reiki or whatever. Its helping keep my spirits up. I appreciate you, your care and concern very much.

Time for Sunday brunch. Thinking Mexican.

Mexican omelet inspired by Rick Bayless, Frontera Grill Chicago