Winter 2023/24

With my next transplant evaluation approaching in a couple of weeks I think I am going to change up my writing style/format just a little bit just so I can get caught up a little faster. I’ve had some really strong feelings lately that I need to get my story jotted down and up to date before this appointment. I don’t know why and maybe it’s nothing – your mind can be very cruel to you when your faced with uncertainty. So I think I will try to go by seasons now and see how that goes. Just touching on “highlights” and maybe not so much detail.

November, I am back on prednisone as my coughing has gotten bad again and my activity tolerance is worse. Although maybe I just need to increase my oxygen liters when I’m on my treadmill. I get up in the middle of the night often because my mind can’t shut off and a run across this while shopping for something for my daughters.

“She finds herself awake again, all throughout the night – and when evening blurs into the morning sky, and still, peace is not in sight. The room is quiet but her thoughts are loud, her mind lost in the wild of her worries. Struggling in silence, she keeps waiting for the exhale, for her fears to part – but there’s a battle within her mind, there’s a war inside her heart. Taking a moment to pause, she allows herself to rest – regaining her peace and strength with each and every breath. Letting her chest rise and fall, she takes each thought in and slowly lets them go – realizing that grace can still find her, even if steady breathing is all that she can do. In this moment of clarity, she realizes that her anxiety does not define her – her worries do not hold her worth. Being okay does not always mean being alright. It’s okay to come undone, for it’s only in the darkness that she can discover the power of her own light.” I have this save on my phone dated Nov. 12, 2023. I remember many nights, even before I was diagnosed, I would sit up at night and in the quiet room, hear the crackling coming from the breathing. Then the anxiety would hit and the heart and mind start racing and it’s only when I reach out in prayer that I feel peace, a calm that comes over me, and I am able to finally get some rest – at least for that night.

But November is the month for giving thanks, and so I shall. First, I’m thankful that I’m still HERE and still functioning fairly well. We did our annual family trip to Kraynak’s to see their Christmas tree land and then out to lunch, but I got food stuck in my esophagus and that’s hurts terribly, thought I was in for an ER trip so it was an early exit, we headed to the ER but finally I was able to relax enough that the food went down so the pain went away but that was scary, time to get that checked out! My oldest has Thanksgiving at her home as well as Christmas cookie decorating at the beginning of December. With all of this family time now indoors I decide to get the Covid booster. I’m not thrilled about it as there’s a little part of me that thinks that all of those Covid shots I had to get for work may have played a part but I can’t prove it so I decide, let’s try “one more time”. I get it on a Friday right after our cookie decorating session. The following Tuesday I’m not feeling so hot-well actually I AM feeling hot!, Wednesday I go to work but have to go home sick, I get home, draw a warm bath, light a candle and realize I smell NOTHING! a eucalyptus candle, held directly under my nose and I smell NOTHING! I already know what this means – order covid tests and have them delivered and sure enough, I’m positive. I contact my PCP, he orders Paxlovid only for the pharmacy to not be able to get it to go through my insurance. By evening, I’m getting scared because I can no longer make it to the couch from my bed without difficulty and I’m worried that if I don’t get this Paxlovid soon, I’m gonna end up in the ICU on a vent. I’m finally able to get the insurance issue resolved on Thursday morning. The Paxlovid causes horrible dry mouth and a metallic taste BUT that’s better than a vent- I’ll take it.

I’m well enough by Christmas to have it at my home, which I’m happy about because I’ve been working on that “12 gifts project” all year, yes, I was able to finish it but there’s no way we can haul all these gifts. I’m also happy, because, again, there’s always this feeling in the back of my mind- that this just might be my last….whatever. (Fill in the blank, depending on the occasion)

Middle of January I have another PFT/lung dr appointment, PFTs were worse so the Dr wants me to start on an antifibrotic medication but it’s expensive and has to go through insurance and then will have to go through a special program by the pharmaceutical company to help with the cost. He also will be calling the Cleveland Clinic for transplant evaluation. I will have to wait on insurance for both of these. In the meantime, I get to stress over the fact that I AM getting worse, scared out of my mind over the future, but I try to shift my mindset to maybe someday I’ll breath better again. And once again, I have to F.R.O.G. and let it go. But it’s SO hard!