A Few More Bumps in the Road: COVID-19, Rejection, and Angry Kidneys

 

For I am convinced that any suffering we endure is less than nothing compared to the magnitude of glory that is about to be unveiled within us.

Romans 8:18

I had decided that I was not going to blog any more after my last post, but the last few months have been very eventful.  I wanted to share these experiences to encourage others who might be going down a similar path.

In September I developed some mild shortness of breath and the transplant team admitted me.

I was taken care of by an excellent Union graduate!

After many tests, the doctor decided to increase the dosage of one of my anti-rejection drugs.

Later in the month we celebrated Maggie's 18th birthday.  Her balloons reflected my mom's age when the order was reversed!

On September 25, my friend and colleague Dr. Jay Bernheisel (liver recipient) rode his bike in the BeTheGift Ride for Life.  He rode 110 miles to represent the nearly 110,000 people who are waiting for an organ transplant.  My friend and colleague Dr. Frank Anderson (kidney recipient) and I gave him a happy send-off!

We sold our house and bought a one story house- we had been looking for over a year.  Michael had a living estate sale.  I dislike that sort of thing, so Henry and I went to my mom's for lunch and a day of Skip-Bo.  He begged her for treats, and of course she gave in!  Who could resist that sweet face?

A late birthday shopping trip and lunch at Buca de Beppo- one of our favorites!

Henry was Eeyore for Halloween.......don't judge. 

On December 14, I woke up In the middle of the night with a fever and headache.  I woke Michael up and told him to leave the room and to not come back.  A test the next day confirmed what I already knew- I had COVID-19. I called the transplant team and the monoclonal antibody infusion bamlanivimab was ordered was ordered. It was quick and well -tolerated.

A few days later Michael developed symptoms and tested positive.  He received the infusion as well. 

We both had what I would call mild symptoms- fever, headache, body aches, etc.  Neither of us lost our sense of taste or smell, and neither of us experienced respiratory symptoms.  On day 9, Michael became combative and was babbling incoherently.  We had to call the ambulance and he was admitted.  The next few weeks were a nightmare, and I will spare you the details.  He was diagnosed with COVID-19 encephalitis.  The doctors put him on the ventilator to keep him still just for an MRI and lumbar puncture, but he stayed on the ventilator for three days.  He ended up with tracheal damage and had a tracheal stent put in at Vanderbilt, which causes frequent episodes of coughing that exhaust him.  He also had severe delirium that he is still battling.  He has been unable to return to work at this point. It has been overwhelming.

What an odd Christmas!  Covid took away most of our traditions, but not our reason for celebrating.

Our Vanderbilt lung transplant family lost several more transplant buddies, including my rehab friend, Ken Thiel, and my dear friend Stacy Cox.  Stacy went home to be with Jesus on Christmas Day.  With COVID restrictions, none of us could go to the visitation or funeral.  This is a picture of Stacy and me after my transplant and before hers.  She was hospitalized for a while during her waiting period because she was so sick. 

I had my two year appointments at Vanderbilt late in January.  My lung function was dropping, and I was diagnosed with chronic rejection. This was caught very early, but it is still not what I wanted to hear.  That, in conjunction with Michael's issues, was a bit much.  The plan was to start a treatment called photopheresis to stabilize my lung function.  The doctor also ordered a special CT to look more closely at my lungs.  It showed mild air trapping (getting air in, but not getting all of it out), and three small nodules. He ordered a repeat CT in a month to re-evaluate the nodules.  

Look at this great cake Michael got me to celebrate my second anniversary with new lungs!  Our friend Debbie Ashworth helped him.

We had a beautiful snow in February.  School was out for a week.  Henry did not like the snow at all.

I had the privilege of being on the cover of a healthcare magazine, and was interviewed about COVID-19 and nursing.

I returned to Vanderbilt to have a central venous catheter placed for the photopheresis treatments.  My veins are horrible!  I am glad to have the line, but it is difficult to shower and not get it wet.  I change the dressing each Friday.  That is a bit awkward, but I am getting better!

I had an iron infusion right afterwards, and it was nice not to be stuck!  Soon after, I began the photopheresis treatments.  I started out with infusions 3 times a week, but the frequency will gradually decrease to 2 days a month.

Photopheresis is a treatment that has been used for many years for various health issues such as graft vs. host disease and cutaneous lymphoma.  It has been used for solid organ rejection for a while now, and has been found to have a good rate of stabilizing lung function.  Here is what happens:

You sit in a comfy chair with warm blankets during the procedure.  They offer you drinks and snacks!

The central line or IV is connected to a machine.  

First, the machine collects a small amount of your blood.

Then the machine separates out the "buffy coat" (white blood cells).

Next, the blood that was collected (except for the white blood cells) is returned to you.

The white blood cells are then treated with a medication called methoxsalen.

The mixture is then exposed to ultraviolet light, which activates it.

The white cells with activated methoxsalen are then returned to your body.  No one exactly sure how it works, but it seems that the treated white cells "turn off " the T cells that are attacking the lungs.  The awesome thing is that it does not affect the "good" T cells, and therefore does not decrease your immunity further. There are very few side effects.  You will become photosensitive for a few days.  You are given sunscreen and stylish wrap-around glasses so you do not burn your eyes.

Meanwhile I had a follow up appointment with the kidney doctor.  She said it was time to start talking about dialysis and kidney transplant.  What?  I was shocked.  Of all the things in life I do NOT want to do, dialysis is near the top of the list. I was referred for evaluation for kidney transplant. So many "bumps" in the road- I keep looking over my shoulder for a swarm of locusts. 

Fully vaccinated.

Easter!

Surprise birthday party with fun decorations, gourmet food, and family pictures!

Eighth grade formal

April is Donate Life month.  As a Donate Life Ambassador, I was given a nice sign for my front yard.

I had the privilege of participating in the Donate Life Tree Dedication and Garden Walk.  I gave a short talk, and during that time I realized I was the only recipient there.  Everyone else was part of a donor family. I was very emotional.  It was a beautiful and meaningful evening. 

Finally the day came for the kidney transplant evaluation. This is WAYYYY different from the lung transplant evaluation.  Bloodwork, EKG, Chest x-ray, and two doctor visits- no five day marathon like I had with the lung transplant evaluation.

There were 5 tubes added after this picture was taken, for a total of 20 tubes of blood!  I am so thankful they drew it from my central line.

First I saw the transplant nephrologist, Dr. Birdwell.  I was very interested to learn that the goal is to list you so that you can get the transplant before you need dialysis. I incorrectly assumed you would have to be on dialysis prior to being listed.

Kidney transplant recipients can go home when they are discharged from the hospital.  They do not have to stay in Nashville.

The wait for kidneys is about five years.  More people need kidneys than any other organ, and most end up on dialysis for many years while they wait.  However, if you can find a living donor, you do not even have to go on the list, they just schedule the surgery.  A living donor goes through rigorous testing to ensure they are healthy enough to give up a kidney.  The recipient's insurance pays all the costs associated with testing and the surgery.  There is also a process called paired donation.  If the donor's kidney is not compatible, another recipient with a live donor is found, and if they are a match you can "trade."  It is fascinating.

I saw the transplant surgeon, Dr. Shaffer next.  He is the husband of the rheumatologist I see, Dr. Kroop.  He explained the processes for the different types of dialysis.

My beautiful grand daughter Maggie, who will graduate from high school next week!  I sure wish I could be there to see it.  It seems like just yesterday she was graduating from Ms. Carol's preschool.  I remember the graduates singing the Tooty Ta song!

God is not quite through with me yet. Sure, the last few months have been some of the most challenging seasons of my life, but I have had some great times at well. Birthdays, holidays, dances, graduations- all courtesy of an organ donor.  

My friend Ashleigh-Anne was given this wooden sign from someone who had gone through a very tough time.  She in turn gifted it to me when I was recovering from my transplant.  I will eventually gift it to someone else, but it seems I still need it.  It is a great reminder that our circumstances do not define us.  Better days are coming!

Eighteen months: Let the Good Times Roll

     

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