The "It's Been a Long Time Since I've Written a Post" Post

I can't believe that it's coming on a year since my last post. It has been one eventful 11 months and by our Lord's grace, I'm still here and doing well.

In June I was a member of a panel that presented the Bronchiolitis Obliterans Syndrome (BOS) Externally-led Patient-Focused Drug Development Meeting to the FDA. This was a very interesting experience that will hopefully lead to more patient centered clinical trials. More quality trials 

may lead to a cure of this syndrome that has cost the lives of so many lung transplant recipients. A written report of the meeting will be published soon.

As I've mentioned before, my Sweetie and I live in a senior living community. The community has been very good for her and we have become involved  in the activities that she is able to do. We participate in most of the physical activities and we are active in the community church. Well, maybe a bit more than active. The couple that led the church are moving in with one of their children and I have taken over the responsibility of leading our worship services. We have leaders from local churches visit each week to share the main message of the service and we share the Lord's Supper monthly. It is a ministry that I am blessed to be a part of.

Health wise we are doing well. Covid has blown through the community a couple times this year and we were able to avoid it so far. Currently Covid, RSV and the flu are concerns in the community, but people who are ill are doing a fairly good job of self isolating. Of course we are up to date on all our Covid Vaccine shots and our flu shot. I've also had 3 doses of Evusheld (monoclonal antibodies) and am participating in several studies involving transplant recipients and Covid 19. We're doing our best to avoid infection over the next few months.

V and I are both progressing in our individual issues. As I go over what all is going on, please keep in mind that I am still much healthier than I was the year prior to my transplant and that many of my issues are a part of the lung transplant package and I've written about the possibility of these issues much earlier in the blog. It's also important to mention that V and I are very happy and make a great team. I'm her memory and she's my muscle.

During V's most recent visit with her neurologist she scored a 9 on the Mini-Mental State Exam (MMSE). On a positive note, a score of 9 means she won't be having to take that exam during our future routine neurology visits. The ability to maintain the strength and energy to care for my Sweetie is an important part of my decisions about my personal treatment plans.

If you've been reading along for a while, you'll probably remember that the upper lobe of my right lung is permanently collapsed and that I've had several major infections, a major pulmonary embolism, a few acute rejections, and that I'm in chronic rejection. The chronic rejection had been stabilized by the Extracorporeal Photopheresis clinical trial that I've been participating in. 

It's starting to look like the Covid infection that I had summer before last has triggered relapse back into chronic rejection.

My clinical spirometry results over the past year indicate a slow and steady decline in FEV1.

This decline could be chronic rejection, or it could be infection. I currently have two infections in my lungs. The numerical column of the chart is liters of air. Just as a reference for where my lungs are now, my highest FEV1 after transplant was over 5 liters.

I've been hospitalized twice this year. Once back in May due to my body not liking a medication change. I've been having premature ventricular contractions (PVCs) and my meds were not controlling them very well. My cardiologist replaced my meds with new ones and my body reacted poorly, like get to the ER poorly. We got that lined out with a tweak of the medications and all is well now. I still have PVC's, but they are pretty much under control.

My second hospitalization was due to infection. High fever, dropping spirometry, the usual infection symptoms sent me to the ER. A bronchoscopy found a fungal infection (aspergillus) that we are treating with an antifungal medication. I am currently in month 4 of a 6 month treatment plan. A couple months later Mayo Clinic returned positive results for a bacterial infection, Mycobacterium abscessus complex. We don't yet have a treatment plan for this latest infection for a couple of reasons. First we have to finish up the course of treatment for the fungal infection before starting any new heavy duty treatments, and second just because the bacterial is present doesn't mean it is currently actively progressing. Right now we are taking a 'wait and see' approach before taking any action. I'm ok with that as my primary goal physically is to have the strength and energy to take care of my Sweetie. And, like everything else, I've put this in our Lord's hands so there is no need to worry about things that have been offered up to the Lord.

One thing I really enjoy doing is computer gaming and I was invited to participate in the closed beta test of Diablo IV. A closed beta test is a pre-release test of a games features and mechanics. I've been looking forward to playing this game since it was announced so gaining access to the beta was awesome. My grandson calls me an "elderly gamer". I get a kick out of that as I've been very highly rated in the games that I play often.

Here is a picture of V and I at my birthday dinner. Our daughter got a gift cert to 60 Vines. It had been since before Covid that we've been there. Really enjoyed ourselves.

Tomorrow is Thanksgiving. One thing you learn with a lung transplant is to be thankful for every breath. 

Thanks for reading. It's kinda therapeutic to be able to put my journey into words.

Happy Thanksgiving my friends.