Many of you have followed the excitement of the past four weeks on Facebook or my Instagram @the_heart_of_the_journey. That being said, I thought I would recap and reflect here while waiting for the results of my third biopsy.
Between days 350 and 399 on the transplant list I continued to decompensate. Going back and reading my Day 350/1 year post, it looks like I left you guys right after the deep freeze Texas had and after having upped my Milrinone dose from 0.25 mL/Kg/min to 0.375 mL/Kg/min. Shortly after this adjustment when the team recognized that I would be there for the long haul I got moved off of the adult floor because they needed my nurses up there for other patients. I would wait on the 23rd floor CPCU for the rest of the wait.
I was on the 0.375 dose for about six weeks. It kept me going for a while, but there was also a slow decline happening as well. Numbers wise, other than o2 saturations, hemoglobin, and hematocrit I looked pretty good, but I still felt exhausted most, if not all of the time. Some days were better than others, but let’s just say that I had zero problems sitting in bed or in a chair and working on school work, watching movies, or napping. I had physical therapy twice a week to help keep me moving and decrease muscle loss as much as possible. I would also go on at least one walk and a shower each day. These walks consisted of walking the loop around the floor once, stopping 3-4 times so I could catch my breath and or bring my o2 sats out of the 60s/low 70s. We had been thinking about increasing the Milrinone dose for a while to see if it would boost my energy levels any more. the Sunday before I got my new heart the doctor on call decided “we’ll never know unless we try,” so we tried. Those next three days before transplant were actually some of the best days I had had in the hospital pre-transplant.
When I first got bumped up to status three I was on three offers (at #122 on a far away offer and #26 and #22 on more local offers) in the first two weeks. Then there was nothing for three and a half weeks. This was a bit discouraging, but my team told me something will come when we least expect it. The next week I came up at # 16 for a heart, then the following week, on March 30th – day 399 on the list I came up at #1!
After spending seven weeks in the hospital seeing the same 6 doctors and the same 6 NPs and PAs you get very close to all of them. The day I got the call, the doctor that has been my rock from the very beginning along with one of the others came in and started chitchatting as I was finishing up dinner around 6:30. eventually the chitchat got quiet and Dr. Hari said “I was on my way out and they finally gave me permission to come tell you that you got a match, you’re #1 on the offer. It looks like a great match and we have accepted it, but we won’t know for sure if it will work until you are in the O.R. and the procurement team has laid eyes on it.” We were all in tears of excitement, I had waited a long time for this.
My mom had gone home for the evening about a half hour before I got “the call,” she was getting ready to feel pretty crummy the next day since she had gotten her second COVID19 vaccine that morning. Needless to say, she turned around and came back that night to sleep on the couch in the room. Since we knew the surgery would be long and driving at night sucks, my day waited until early the next morning to drive to Houston, Despite having just returned to Dallas that Monday.
The night before transplant was full of lots of tests. At least 16 vials of blood, an EKG and a CT scan. We spoke to two surgeons, the main one being the director of the adult congenital heart surgery program who had come from Canada where he specialized in transplanting adult congenital heart patients, and the ICU team that would be caring for me on the Adult CHD floor.
I got wheeled back for surgery at 11AM the next day (3/31/2021). The surgery took about 11 hours given all the scar tissue that had built up in my chest over the years from three prior open heart surgeries. Along with taking my old heart out, and putting the new heart in, my surgeon also had to deconstruct the Glenn shunt. This involved removing the superior vena cava (SVC) from my right pulmonary artery, patching this artery, and attaching my SVC to the donors SVC and right atrium. They also had to make sure to attach the donor heart at the main pulmonary artery above where the pulmonary artery band I had placed when I was two was so that I would no longer have a restriction there.
The first few days in the ICU were a little rough. I woke up partway through the first night with the breathing tube still in, of course I was not happy about that. I felt so congested that I felt like I couldn’t breathe, but I couldn’t tell them. I tried to play charades, but couldn’t. I motioned for something to write on, but I was so drugged up still that I literally could not write. Thankfully the ICU team pulled the breathing tube the next morning. I also struggled with low blood pressures the first few days. The first day out they had to start me on epinephrine and norepinephrine to try to get it to stabilize. the first dose they give hits the body HARD, 10/10 do not recommend, it was probably one of the most jarring experiences to have my heart rate go through the roof while my blood vessels vasoconstrictor for a few seconds to bring my blood pressure up to a safe level.
During all of this I had two of my favorite ACHD nurses (Fernando and Chad), and I ran those guys ragged the first two days. I felt kinda bad about it and apologized a few days later when I was more with it, they gave me a big pass. Every time I would freak out about something they would put the vitals monitor in front of my face and point to my O2 saturations of 97-100, the highest I had ever seen, they would also point to the stable, not all over the place heart rate. They knew I liked numbers, they would calm me down with numbers and stable trends.
On day three post-op the physical therapist I had worked with since admission decided to pick up a shift on a Saturday and was able to help me take my first walk post-tx. The plan was to make it to the door and back. Yeah, I made it through the door, then down one hallway, and another, and all the way back. My first walk, three days out while I still had chest tubes and lines coming out of everywhere, I was able to walk further than I could the day before transplant. It was an emotional experience.
Between days three and five I had my PICC line, a line in my foot, one arterial line, and one IV pulled. On day five I had three large chest tubes and the external pacing wires pulled; that is when I really started to feel better On day six I had an IJ line pulled and came off of ICU status, I was feeling pretty good at this point. I already had way more energy than I did before the transplant. Most importantly, I was PINK for the first time in my nice. No more sickly, cyanotic skin, nails, gums, and lips. It ia still so surreal.
On say seven I was moved back to the 23rd floor. Since I was doing so well the team was kind of thinking of sending me home before my first biopsy at two weeks out, but then we realized that I was hardcore retaining fluid. We started IV diuretics on a Friday and by Monday I was down 4-5 liters of fluid with more to lose. I was kept on these IV meds until a few days after my first biopsy and in total lost about 8 L. The more fluid I lost the better I felt.
On day 12 post-op, when I still had quite a bit on fluid, took me to the stairwell just to make sure I could do them slowly and safely. I was nervous, but excited. Could my body really do this? I spent YEARS doing anything to avoid going up stairs. I would walk down stairs or down a ramp to get to an elevator to go up (I am talking to you UCG and WCG at A&M). I went up the first two steps slowly, then Monica said, you got this, go1 I went up one flight not even breathing hard. I went up the second right away starting to tear up from how freeing it felt. My withered away muscles started to wake up but I still felt good so I asked if I could try one more. She obliged and when we got to the third landing we both just started bawling with excitement, gratitude, and happiness. It was the first time in my life that I had climbed up three consecutive flights of stairs and all that was “wrong” was that my leg muscles felt like jell-o. I still tear up thinking about this experience.
Fresh out of transplant for for the first year, biopsies are done often because about 1/3 of transplant recipients experience acute cellular rejection within the first year. These biopsies are done by catheter through the neck and/or groin. They take 6-7 very small pieces from the right ventricle and measure pressures throughout the heart. When going through the groin they can also check the coronary arteries since stiff coronaries can happen over time in transplanted hearts. The small pieces are sent to the pathology lab where they are stained on slides and graded 0R, 1R, 2R, and 3R. 0R to 1R is considered within normal range. Since I was feeling so well we thought my first biopsy was going to be fine and I would be good to go home soon after. Unfortunately. that did not happen. I got a 2R, moderate acute cellular rejection everyone was shocked. The good thing about acute cellular is that is treatable.My team gave me four large doses of IV steroids then decided to add a massive bag of IVIG to cover our bases. I stayed there another week to let it all “marinade.”
So, the next week I had a second biopsy to make sure we had treated the rejection. Again, I got a 2R and again, we were all shocked. Though it was 2R it was borderline 1R/2R, but my team did not feel safe not treating it. After the biopsy I had three rounds of antithymocyte globulins (ATG), made of rabbit polyclonal antibodies. ATG was pretty rough on my veins. By the time I got this treatment it was 10 weeks into the stay so my veins were already shot, but between the pre-meds and actual ATG we literally burned through four veins/IVs. Believe it or not the IV benadryl was the worst part, It was so bad that I had to ask the pharmacist if I could take oral benadryl for the last round, thankfully he said yes making the last round much more bearable.
The last round was on Friday, and during Saturday rounds my team told me there was no clinical reason to keep me inpatient so they let me go home. Being home did not feel too real until yesterday (when I started writing this post). I had a third biopsy and finally got a 1R, within normal range! it was the first time I went in for a procedure and left the same day in five years! I was always too complicated or unstable or too slow to recover before transplant.
Ten and a half weeks at TCH is a long time. The first seven weeks I really didn’t mind, I needed the help. I didn’t have an appetite, I was in heart failure, I couldn’t do much for myself. The last 3.5 weeks got more difficult as I started feeling better and gained back my appetite. The food started getting old real fast, my one walk with multiple stops pre-transplant turned into 3-4 walks a day of 3-4 laps each post-transplant. My worst 6 minute walk test pre-transplant was 173 meters, Wednesday during my OUTpatient PT evaluation I walked 423 m without stopping once – that’s a 243% increase in distance. There is no way this would have been possible without my donor and their family choosing to save lives in one of the worst moments of their lives. For this, I am forever grateful. especially today on National Donor Day (4/30)
The most common questions I have gotten from people since transplant are “Do you know anything about your donor?” “Are you going to meet you donor’s family someday?” The answers to these are: we have zero information about my donor, other than the heart was on ice for two hours and it flew and I don’t know if I will ever get to know or meet my donor family. I want to give them some time ti grieve, but I plan on writing them a note in a few months and giving it to my coordinator to get to them. I will then leave it in their hands on whether they would like to meet. If they would like to go public, I will introduce them If not, please respect their privacy. That being said, I would love to meet them and share how grateful I am that they chose to donate life that has completely changed my life. They have given me a life I never could have imagined, from pink fingers to climbing stairs and so much more time to explore new things.
I am also extremely grateful to have such a large community and support system who has followed along and helped carry me through this journey. If you are not already a registered organ donor, I hope seeing what organ donation has done for me encourages you to register. Registering is not enough, you also need to make sure your family knows your desires. These conversations about end of life can be difficult to have, but next of kin has the final say on organ donation, even if you are registered. Go to register.org to register or check your registration status.