One year ago, Nicole shared with you all that we had received the call but advised that it could be a “dry run” as they say in transplant lingo. Turned out it was the real deal.

Nicole continued to provide you throughout the week with updates, posted a very very drugged video of me thanking you all, and by the end of the week I was writing posts in the middle of the night. We were all tuned into my bilirubin levels because that was what was keeping me in the hospital.

365 (or is it 366 because of the Leap Year?) days later I am beyond grateful to update you with the results of my 1st annual appointment results.

On Monday, January 25th I had appointments scheduled from 7:40 am until 3:30 pm. (RECOVERY IS A FULL TIME JOB – ALWAYS) The morning was going smoothly.

Labs – one poke for 12 vials CHECK

Urine Analysis – CHECK

Chest X-RAY– CHECK

Ultrasound – CHECK (showed the tech the pictures of my livers - Walter and Walter 2.0 and joked that I hope 2.0 still looked as pretty)

Kidney Function Test – CHECK… but without some difficulties. Quick overview of the test. You arrive, empty your bladder, and get an ultrasound to see how much volume is left if any. Then you are given a shot and told to wait an hour. At that hour mark you must empty your bladder again and have another ultrasound. Labs are drawn and you wait 45 minutes. At the end of those 45 minutes labs are drawn again.  My bladder would not empty itself after the first hour, so I had to be catharized ☹ which added on to the long test to begin with. I had been fasting since 7pm the previous night and it was quickly approaching noon. For someone who eats 5 meals I day I had already missed 2 of my meals. During one of the waiting times, I received a message on my portal from Bobby, my transplant nurse, advising that the ultrasound I had done of my abdomen resulted in abnormal findings and that they were ordering a CT scan for me. Cool a CT meant that I would have to continue to fast.

As the nurse came in to take the last set of labs, I received a call from scheduling advising that the CT was scheduled for 7:10 that evening (insert stomach growling) but I only had to fast for 2 hours prior to the test.

When the two-and-a-half-hour kidney function test was completely over I raced out of the building and met my precious mom who had been waiting in the car for me since 7:30am when she dropped me off – no visitors in the clinic or hospital. We went for a quick drive-thru car lunch before my two afternoon appointments.

Bone Density – CHECK

Dermatology – CHECK (transplant recipients are like 80% more likely to develop skin cancer)

We left the Shea campus and headed to Nicole’s house to wait until the night appointment. When we arrived back to the Shea location the entrance was completely dark but surprisingly still open. I went back through the COVID check point and checked in for my CT scan.

This scan was ordered contrast. Meaning that I would have an IV put in. That took three attempts to find a successful vein (Big? Strong?) enough for the contrast to go through.

 I texted Russell after they finally placed the IV that I was so tired and wanted to cry. I was exhausted after 12 hours. In that moment I realized how strong I had been through the fall of 2019. I had been able to navigate many appointments and tests plus work and social schedules. It was tough – I knew I was exhausted during those weeks leading up to listing.  I have no idea how I survived 12+ weeks -- I was in survival mode, 100%, I was running on willpower. (My favorite thing to say to the nurses during my hospital stay was, “I was surviving not thriving”).

Finally, after 8pm I was taken back for the scan. The scan itself lasted less than 15 minutes. They took the IV out and I was finally headed home.

On Tuesday, I had an MRI scheduled. SO STRANGE. I was anticipating having to drink some type of “gel liquid” or have another IV placed but no! I was called back for the MRI and placed on the table feet first (big relief). But then I was strapped in three different times – including my arms. Then a metal plate was laid over my liver and strapped on even tighter than the other straps. Into the machine I went with a mask on and a wash cloth over my eyes because being in an MRI is terrifying. With ultrasounds, MRIs, and CT scans of the abdomen there is a lot of breath holding done. The machine will say take a breath in and hold. This one was take a breath in, let it out and hold. I was not prepared for that but even more so not prepared on one of those rounds when the metal plate started to shake and shook my WHOLE BODY. So here I am strapped on a table, shaking, and holding my breath. All I wanted to do was laugh.

OK enough rambling. This is what is up:

Today I met with my doctors. 

“Currently excellent allograft function with normal liver enzymes”

Translated: 2.0 is running smoothly.

I have chronic renal insufficiency but are monitoring for now. This is often found in patients who are on antirejection therapeutics long term. The ultrasound that had “abnormal findings” and the CT with contrast resulted in a normal appearing liver, but it showed stenosis in (narrowing of) my right hepatic artery. This artery was originally created in my first transplant with an artery from my upper right leg. The doctor I met with today advised that my case was going to be discussed at the committee meeting to decide a course of action. The CT also found a cyst on my right ovary, but does not seem to be of any concern at this time.

They decided this afternoon to repeat ultrasound and CT scan in three and six months to keep an eye on it.  The course of action if it needs to be corrected will be an inpatient surgery where they go through the vessels (? Arteries? Groin?) and place a stent to improve the blood flow. Again, since this artery was created and not the way it was intended to be, it could just be that it is just the way it is. I am thankful we will keep a watchful eye on this.

I have been vaccinated for Hep A and B but show no antibodies so I will be revaccinated this year for those. I am eligible for the COVID-19 vaccine and they are encouraging all transplant patients (and everyone – duh) to receive it. I will be receiving it as soon as Mayo starts offering it to their patients. They have no idea the efficacy rate of the vaccine for immunosuppressed patients. It is of the upmost importance to develop herd immunity to protect those like me who will have a harder time fighting off COVID. My circle will have to vaccinated. Based on my body not having any antibodies for Hep B even though I was vaccinated in 2019 is not the most comforting sign.  

I am discontinuing Fluconzole which is medication I was taking to prevent fungus infections (Valley Fever is prevalent in Phoenix) so I will have to have blood work weekly for a while longer until my tacrolimus levels even out after the change. ALSO. Fluconzole does have the ability to cause hair loss … so perhaps I will start to see more growth?!

And lastly, my chest x-ray reflected developing infection, possibly bronchiolitis. I will be repeating x-rays over the next couple of weeks although I have no visible symptoms at this time.

I also met with general surgery today to follow up from the gastric sleeve procedure. I have healed and adopted well to this new lifestyle. Russell and I play tennis and pickleball weekly and I have been doing a barre program for the past eight weeks. I have lost a total of 158 pounds – half of my body weight.

Overall, the transplant team is incredibly happy to see that I am feeling and doing so well. A few things we must monitor, but overall a great report card for this first year! COVID has restricted my enjoyment on my new lease on life… but I am so thankful for each and every day.

Stay Safe. Stay Healthy.

Thank you for your support and allowing me to (over)share my journey.

Love always, 

Katie