LUNG UNFOLDING

    Home Spirometer 

The testing for my third-year anniversary of the lung transplants went really well. It began with a CT Scan at 7:30AM where we met a 4-week transplant person in the waiting room. She had Covid then got RSV, which totally destroyed her lungs. Imagine. What a shock.

We chatted waiting for our scan while Michael was talking with her husband in the waiting room. They were a really wonderful, supportive couple. She asked me if I had one piece of advice for her. I did.

From the CT Scan we headed to the Lab for the spirometry test (lung capacity). Something that has bothered me was my spirometry scores. I’m around 2.15 and was happy until I ran into women and men who were in the 4-6 range. After transplants, the lungs continue to unfold up to two years. After that, no more expansion is possible. 

Since I had the collapsed L2 before the transplants, I no longer had my regular gym routine and had difficulty just walking with a walker/cane. I didn’t go back to the gym until over a year after the transplants, but at a much lower level of exercise. Through the years, I wondered if my lungs had fully expanded.

From the Lab, we walked to the transplant clinic and met with one of my favorite doctors. She asked me to do my home spirometer in front of her and said I had good form. I told her about being worried about my low score. Pulling up the CT, she showed me that my lungs were fully expanded.

What a huge relief. 

Telling her that I was concerned that others had such higher scores, she said I was a tiny woman with small lungs. Others were much larger people with larger lungs and capacity. I started to laugh because I still don’t think of myself as a “tiny” person! If you have read the previous blogs, I had to lose well over 100-pounds to be approved for the transplants. I also asked it they had to shave the bottom of the lungs to fit into my body, she checked and said no. 

Two mysteries solved in one appointment! Lungs fully expanded. Lungs fit into my chest cavity. 

So, what piece of advice did I give to the woman while we were waiting for our CT Scans? Exercise to make sure the lungs are fully expanded before the 2-year deadline. 

MAINTENANCE OF LUNGS - YEAR 3

The work to maintain the transplants really changed after two years. The doctors loosened their reins, the RN was still available for any questions or to address any issues and I really felt I had the skills to handle the responsibility of the daily maintenance.

In February 2023, I had my final scheduled bronchoscopy along with the CT scan, spirometry and visit with a transplant clinic doctor. Here was the schedule for the year:

May 2023 - Zoom appointment with clinic doctor.

August 2023 - CT scan, spirometry and in-person visit with a clinic doctor.

November 2023 - Zoom appointment with clinic doctor.

February 2024 - CT scan, spirometry and in-person visit with a clinic doctor.

Last year, my hematologist and liver doctors released me from their care. That was a good thing. 

Being on prednisone since 2005, my bones are very brittle. Every time I fell, I broke a bone. Finally, needing time to completely heal, not falling for 6-months and off of Fosamax for three months, I qualified for Evenity in January 2024. 

Evenity. It is a bone-building drug that will not interfere with the anti-rejection drugs. My first injections were at the infusion clinic and the second set of injections will continue next week.  It consists of two injections in the abdomen once per month for 12 months. There has been no side effects, so far, and my fingers are crossed that this drug will really improve my bones.

The other important work of maintaining my lungs is consistent exercise. Working out has always been important to me and it really improved my numbers post-transplant. 

I love cooking and I swear Michael is still married to me because I am a good cook! Healthful food and being aware of what we are eating is important to us. With Michael’s issues, saving that for future blog, the doctor recommended he eat a Mediterranean diet. I will give detailed information about that as it has opened up a new world for us. 

Lots happening. More to come.

ROUGH DAY

Dear Reader, you may remember when I wrote about the pre-transplant doctor telling me the importance of the patient having enough grit to get through the process. He remarked that I had the most grit of anyone he had ever met and I replied that he had never met my mother! It is true. At 95-years old, she is one strong woman who continues teaching all of the family life lessons. But yesterday, we finally faced the necessity of her entering into a Hospice program. 

It was a rough day. A sad day.

Mom had a series of strokes six-weeks after I returned home after the transplants in May of 2021 and endured Covid in January of 2022. With Covid, the hospital doctors approved her return to the facility to die but she fought her way back to life. With extremely limited vision, she was walking with the PT and still engaged in life. 

But, it suddenly changed.

Mom began with delusions and obsessions and it grew to her being non-responsive and sleeping 24/7. As a woman who always had her makeup and hair in place everyday, she recently was no longer doing either. Earlier this week, we were have a conversation and I watched as her eyes began to glaze over then closed. She fell asleep. She had made a dramatic downward change since Thanksgiving. I was concerned that my timing may be off but the hospice RN told me with all the changes we noticed, we made a good decision to begin hospice at this time.

Last night, we spent the evening with old friends and I was able to talk about it. They were so supportive and one of them had a similar experience. 

My goal? I so wish to make her as comfortable as possible, that she continues to have no pain and that she passes peacefully.

I had amazing parents. Truly amazing. In my heart, I know they will be together again.