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. 

CHANGES IN THE PROCESS

 In early November 2023, a friend had lung transplants. I met her through this blog and visited her home several times during our many May road trips. We talked a lot before and after her surgery, I tried to share everything I could think of that might help her through the process and recovery. After the surgery, we shared the profound feeling of gratitude for our new lungs.

What shocked me was how the process had changed in just three years since my transplants. The biggest change was when she was finally put on the transplant list, she was guaranteed a transplant in thirty days! Thirty days! I was waiting and waiting on the list for around 168 days, I think. 

Also, when I was transplanted, it was required as standard practice to be within a year of death. It was a long recovery to regain my health after being so ill. She, on the other hand, had the surgery, left the hospital in a week, went to a rehab center connected to the hospital and began pulmonary rehab. Within three weeks of her surgery, she was doing 15-minutes on the treadmill, bike and another piece of apparatus. Last week, she just finished her required 90 day stint of post-transplant rehab.

Because she was not as weak going into the surgery, her recovery was much faster. Marvelous. I am looking forward to learning any other new procedures and processes.

I also want to offer to answer any questions you may have, dear reader. I promise to answer honestly, no matter how difficult.

Anniversary #3 and Counting!

 

Well, it has been awhile since we last connected. I have so much to share and am planning to post on a regular basis again.

On January 24, 2024, Michael and I celebrated the 3-year anniversary of my lung transplants. It was a day filled with memories, shared breakfast with friends and a lovely, solitary Italian lunch together overlooking the harbor. 

A week earlier, the owner of a local company knew that I had baked baklava for years as I also brought them some before sending it to my brother for his birthdays. She gave me a recipe from Instagram for Baklava Cheesecake. Yes, you read that right. For my anniversary, I made it the day before and delivered a huge hunk of it to the company. She was so surprised and was going to immediately share it with the employees. Our neighbor and another couple also received big hunks so we just had two pieces each over two days. It was delicious and surprisingly not very sweet but rich with butter and cheesecake!

I do want to share so many things: weight, diet, Michael’s health issue and new diet, a friend’s recent transplants and the advancement in the process, speeches to nursing students, current relationship with the transplant clinic, learning to reach out, medications, limping, gardening, organizing, my 95-year old mother’s health and so much more.

On this quiet Saturday, Michael made coffee, served me yogurt before making a simple breakfast. This man makes breakfast every morning, still does all the food shopping as we are aware of crowds and I try to avoid them whenever possible. I’ll do the laundry while preparing our tax information for processing, which should take 4-5 hours. After taxes, I will make dinner as we rarely eat out. 

I am feeling fantastic, lowest weight as an adult, saturation rates have been 99-100%, low blood pressure, back to the gym, eating fantastic home cooked meals, reaching out to friends and continuing to being grateful for everyday.