Sunday, December 13, 2020

An Update From the Casa

 It has been awhile since my last update, I'm really sorry about that.

We have been busy and have gotten lots done.  As I've mentioned previously, my Sweetie has Alzheimer's. Her disease has progressed to the point where she really shouldn't be left home alone during my hospital stays. My Team has been really good about letting her stay with me when I am at my home away from home, but it is hard on her and adds stress to both myself and my Team.  So... we've moved into a retirement community. Our new home is at Atria Canyon Creek in Plano.  As you can imagine, there was a lot of emotions involved with the idea of moving and the process of packing and the move itself, but now that we are here my Sweetie is enjoying our new home. I've also hired some homecare help. Right now we have someone in once/week for 4 hours in the morning. This is to help my Sweetie get acclimated to having someone else around helping with our routine. If needed, we are set up for daily help.  Two shifts at four hours each.  First shift in the morning and second in the evening to help ensure V (my Sweetie) gets her meds, eats, can watch her shows on TV and get to bed. Financially this puts us at our very limit, there is zero money for anything else but the amount of stress that has been taken off of my shoulders from worrying about V and her future is well worth it.

Health wise I am doing very well. The Extracorporeal Photopheresis (ECP) Clinical Trial has stabilized my chronic rejection. I really surprised myself during the move by being able to do much more physically than I imagined I could. Our daughter really helped us out by sending a person to help pack out the kitchen and providing movers to move the majority of our stuff. We did move a few Jeep loads by ourselves and I packed the rest of the house and unpacked everything. I had an issue with inflammation affecting my lung function (likely due to stress) so did a steroid taper.  A week or so after the taper I started having a real hard time getting good numbers when doing my daily lung function testing.  All of my other vitals were good. No temperature, blood pressure and heart rate were good, and home EKG was normal (for me).  My incentive spirometry was down a small amount, but not by much. So I worked on getting my lung function up, blowing spiros and using my incentive spirometer throughout the day. I started having muscle spasms in my mid back and my diaphragm felt like it was being pulled up. These are some of the symptoms I had when the upper lobe of my right lung was collapsing (happened 4 times before it became a permanent thing). So I went into the Clinic for an X-ray and spirometry.  My clinic spiro was great and my lungs looked really good. After some investigating it turns out that my home spirometer was failing and that I had irritated my diaphragm and caused the strained/spasming muscles through effort. I'm still sore but with a new spirometer not worried :) I've always depended on instrumentation and the data it provides in my professional life and my health journey.  It's really bothersome when instruments fail me.  On a bright note, It is kind of cool that I've outlived my spirometer.

I was able to (virtually) attend an Advanced Lung Disease medical conference last weekend.  If you are an organ transplant recipient, or are around someone who has received an organ transplant, please continue to be very careful and aware of COVID-19.  Despite what a lot of the click bait opinion sites state, C-19 is devastating and especially hard of the solid organ transplant community. Take care out there. We haven't gone through what we have, and do what we do, to be taken out by a virus that can be contained if everyone would just try to help out and contain it.

Thanks for reading, appreciate you.


 

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