Rejoice in hope, be patient in tribulation, be constant in prayer.
Romans 12:12
July 24, 2020 marked the end of 18 months with the miraculous gift of new lungs. I don't think anyone could have predicted how just odd the last six months would be. However, I am breathing well, I had another birthday, and I had a wonderful week on the beach with extended family. Post- transplant life is still a full time job, I had a scary hospitalization, and......there was (is) COVID-19.
We had a pretty mild winter, but we did have one light snow.
At the end of January, I was not feeling great, and the transplant team sent me for some tests. Guess what? I had coronavirus! Not COVID-19, just the plain boring variety that causes mild symptoms of a cold. I also had a re-activation of cytomegalovirus. Apparently CMV loves to join the party when you have another virus. Why have just one virus when you can have two? With my immune system suppressed it was a tough fight, but I did not have to go to the hospital. They just added another pill.
I worked in Maine for a few days in early February. I wore my N95 mask in the airport and on the plane. A man boarding behind me asked me if I was from Wuhan. So funny. I replied that I had a double lung transplant. You should have seen the look on his face, and he was a surgeon!
I had never been to Maine before, and here is my comment about Maine in February: Why????
Later that month, I saw my rheumatologist, Dr. Susan Kroop, for the first time since transplant. I have been seeing her for years, and wanted to include her picture in my blog. Interestingly, her husband is a kidney/pancreas transplant surgeon.
We had been planning on a family trip to the beach before my transplant, and of course we cancelled it when I received my lungs. We re-scheduled for this March-my first vacation in almost two years. My mom, my husband, our girls and our grand daughters, along with my sister's entire family, got together for a week at a beautiful home on Grayton Beach.
Henry had to get attention from my mom before we left. Look at those sad puppy eyes.
If you are driving to Florida, I am pretty sure it is a law to stop at Whataburger.
This is how you play on the beach when you take anti-rejection drugs that make you very susceptible to the sun (and therefore, skin cancer). I was told that I look like a movie star, so it's all good.
A week full of smiles and laughter.
The whole clan. I know my dad and my sister were with us.
Silly girls!
We went on the best dolphin cruise ever!
My favorite picture of my mom. She loved the dolphin cruise. We have a video of her dancing on the boat to "YMCA." Text me and I might share it with you.
I am not a huge fan of seafood, which is a good thing because I think they ate all the crab legs in Florida.
Near the end of the week, COVID-19 got real. They started closing the beaches and restaurants. Here is what the breakfast meat section looked like at Publix.
Thankfully we had enough food in the gourmet kitchen at the house, so we ate there and played Skip Bo for the rest of the week.
By the very end of the week, COVID -19 got REALLY real, and flights were cancelled. My niece Amanda and her fiance' Pat had to drive a looooong 17 hours to Connecticut. We were looking forward to traveling to Connecticut this November for their wedding. Thanks to COVID-19, it is now postponed.
Once we returned, schools were transitioning to on-line, businesses were closing, and there was a national toilet paper shortage. People were told to stay in, wash their hands (what a revolutionary concept!) and wear masks. Welcome to my world.
Another birthday came for me, courtesy of my donor.
Henry graduated from KinderDOGen!
The beach vacation wasn't enough, so I booked a stay at the Vanderbilt all-inclusive resort and spa in May. They still aren't exactly sure what happened, but I had a severe infection called sepsis. There was bacteria (pseudomonas) in my blood. I was hospitalized six days and I do not remember much of it. Just to share a little about the world of COVID-19, I stayed in the ER for 12 hours and Michael waited in his truck the entire time as he could not go in. They did let him come to my room once I was admitted. Good times.
After a few days, they let me eat ice cream from a styrofoam cup.
Vanderbilt, THIS is the kind of ice cream you need to serve. Gelato from the beach!
Yum, broth, jello, pudding! I know your mouth is watering.
Finally, graham crackers and peanut butter. Best food ever. I would have throat punched anyone who got between me and this gourmet food.
Apparently the stay at Vandy was not enough either, because the night after I was discharged I ended up in the ER with 12, yes 12, kidney stones that fortunately passed. But wait, there's more- a week later I had another one. Lucky 13!
During the last six months, I have had bloodwork every 1-2 weeks, clinic visits, a bone marrow biopsy (yikes!) , and frequent medication changes. I am still having kidney issues, and I had to take shots to increase my white blood cells twice. They added a second steroid this week to try to keep my potassium down. Yay. Double the steroids, double the fun.
There is an upside to having the frequent lab work and medicine changes. I get to talk with two of my favorite people every week or so. Elizabeth, the best post-transplant coordinator EVER, and Ginger, her sidekick. They have been with me through all of the mountains and valleys. I love these ladies.
Henry and I are avoiding any place that does not require masks, with the exception of my pool.
I was looking forward to seeing all my Vanderbilt Lung Transplant Buddies at the annual spring picnic. Thanks to COVID-19, there was no picnic. Each of us has had some ups and downs; and one of our friends is having severe rejection. She has had intense treatments but her spirits are high! Two of our lung transplant friends went to be with Jesus during the last 6 months. I sure hope we can all see each other soon- it is such an inspirational, encouraging group of people. We share a bond that others can never really understand.
On behalf of transplant recipients everywhere, thank you for wearing your masks- and making sure they cover your mouth and your nose.
Michael and I were supposed to be in Germany for ten days in July. Part of our trip was to see the passion play in Oberammergau that happens every 10 years. We were both so excited! Of course that did not happen either, thanks to COVID-19. They postponed it for 2 years- so God willing, we will still get to go.
In July we celebrated Anna Kate's 13th birthday. She chose a taco bar and a pool party. So thankful for the breath and strength to participate.
I wrote to my donor's family in February but I have not received a reply. I pray they have not been affected by COVID-19- particularly that they have their health and jobs. As much as I would love to thank them in person, I respect their decision. I cannot imagine their grief. You might remember the tree I adopted in my donor's memory- it is growing stronger every day and even has leaves on it! The growth of the tree represents the growth of my gratitude.
I can't wait to see what the next six months bring.
I press on toward the goal to win the prize for which God has called me Heavenward in Christ Jesus.
Philippians 3:14
