Welcome to my second blog post about my annual heart transplant check-up. It takes two days to complete so I guess that warranted two separate posts. If you haven’t seen my last post which featured information about my heart biopsy and right heart cath, you can find that at Annual Heart Transplant Check-Up Pt. 1.
Today we are picking back up right after the chest X-ray following my biopsy and right heart cath. Next up is the clinic appointment.
Thursday, February 18, 2021
After the chest X-ray, I head to the Heart Institute located inside of the hospital for my clinic visit. The clinic is running ahead of schedule because they bring me back 40 minutes early. Today is actually the first time I am meeting this nurse practitioner since the one I had previously been working with had moved on to a new position.
During the visit, we discuss my medications, the results from my blood draw, and any concerns I may have. One that I brought up was genetic testing. This is something my husband and I have talked about getting for a while but hadn’t brought up with my medical team. Besides it being interesting to possibly find out more about what caused my peripartum cardiomyopathy, most importantly I am concerned about my children’s health. My children could be at risk if there was a genetic basis to my PPCM. This is information that I need to know. Luckily, she was on board and put in a referral.
In my previous post, I mentioned that I am always want to know what my creatinine value is from my bloodwork. My kidney function has slowly been decreasing since my transplant. Unfortunately, these values have not changed. I still have stage 4 chronic kidney disease. However, with a chronic illness, not getting worse is a victory. I’m grateful for stability. I’ll take stability.
Right after my clinic appointment, I have an echocardiogram. The American Heart Association has a great explanation about what happens during an echocardiogram. It is essentially an ultrasound of your heart. Ejection fraction (EF) is often a key-value in the other Heart Stories on this blog. An echocardiogram is where we get this value. I’m always anxious to find out the results of this test.
After this test is complete I’m finally free to go home for the day. I’m very tired and hungry at this point and spent the rest of the evening relaxing at home. I head to bed early because tomorrow will be another full day.
Friday, February 19, 2021
I wake up earlier today because the check-in for my left heart cath is at 8 am. I’ve once again packed all of the items I brought for yesterday’s appointments, exchanging Thursday’s pillbox for Friday’s.
I always bake in an extra 30 minutes for the drive to the hospital so we end up getting there early.
After I check-in, they actually bring me back before my 8 am check-in time so I thought that was a good sign that they may be ahead of schedule. I dress in the hospital gown they have waiting for me. No pants this time as they may have to go through my groin for this procedure if my wrist doesn’t work out.
After some routine questions, they set me up with the Bair Hugger and an IV for fluids. Contrast is injected into the chambers of the heart allowing the coronary arteries to be seen during this procedure. The IV fluids pre-hydrate me due to my kidney disease since the contrast is hard on your kidneys.
Around 8:30 am a cardiac fellow comes in and goes over the procedure with me. Usually, this interaction happens right before they wheel you back to the cath lab so I was confident it wouldn’t be too long before I went back. I was wrong.
I end up waiting and waiting and waiting. Around 9:30 the nurse who had checked me in, comes and tells me it will probably be another hour.
I keep waiting. I try to keep myself entertained doing some landscaping on Animal Crossing and messing around on my phone but after a few hours, I’ve even bored of those things.
Around 11 am another nurse, who had done my ECG that day, walks in and she seems surprised to see me still in the room. She leaves to ask why I hadn’t been sent back yet. Finally, the charge nurse comes in and tells me the doctor had been pulled into another surgery causing the delay of my procedure. She promised they would be ready by noon.
At 11:55 am I was finally rolled back to the cath lab. The cath lab team prepped my wrist and groin and they started my sedation. I found out before the procedure that they would be giving me Fentanyl and Versed. Although I’ve had both of these drugs before, this time was really different.
Just minutes after the nurse told me she had given me the sedation through my IV, I started to feel a little fuzzy, which is normal, but I also started to cry. Tears were just streaming down my face and they continued throughout the entire procedure. I don’t actually remember much while they were doing the left heart cath but I do remember crying the whole time.
When the procedure was over the nurse who had administered the sedation told me I must have a high tolerance and that they had to keep giving me more. They ended up giving me 150 mcg of Fentanyl and 4 mg of Versed. In case you are not aware, that is a lot of sedation especially considering I weigh less than 120 lbs. I was still crying by the time they brought me back to my room.
Everything is a little hazy at this point but one of the first things they did was give me a brown bag lunch. I was starving and inhaled the turkey sandwich, apple, and baked chips.
My dad came into the room while I came down from sedation and wait for my wrist strap to decompress. At the end of the left heart cath, the doctor placed a clear plastic strap on my wrist. The strap has two compression balloons that the doctor inflated to apply pressure to the puncture site. Over the next couple of hours, a nurse comes in every little bit, inserts a syringe, and slowly decompresses the strap. Once fully decompressed, I can go home.
During this waiting period, my transplant coordinator calls with the results of yesterday’s tests. I was still sedated so I don’t really remember the conversation very well but I relayed the results of Thursday’s procedures to my dad so I could confirm with him later. The biopsy found no rejection and the echo showed my heart functioning at 65% (normal is between 50 and 70). This is good news but the good news didn’t last for long.
Not long before I was about to leave the cardiac fellow returned to my room. He asked me how my wrist was doing and suggested using ice packs for the pain. Mind you I am still crying from the sedation so I’m sure I look pathetic but none of that really mattered when I heard what he had to say next.
Wait, Am I Dying Again?
Apparently, during the left heart cath, they discovered some plaque in my arteries. I’m by no means an expert on coronary artery disease but I know it is fairly common. Cholesterol-containing deposits (plaques) are most often the cause. Likely, if CAD is discovered, the patient will be asked to make lifestyle changes like changes to their diet, be put on medication, or possibly have surgery.
Things are a little different for heart transplant patients. Cardiac allograft vasculopathy is an accelerated form of coronary artery disease in people who have had a heart transplant. Normal CAD generally has a single point in the artery where there is a blockage and can be fixed with a stent. Alternatively, with CAV there is a gradual narrowly throughout the artery restricting blood flow causing damage to the heart and possibly leading to sudden death.
A special sensitive test called intravascular ultrasonography detected the plaque in my arteries. At 3 years post-transplant, CAV is detected in 75% of patients using this testing method. There is no cure though changing medications can help slow the progression. Ultimately, the only solution is to get a new heart transplant.
After the first year post-transplant, CAV is upon the top three causes of death following a heart transplant.
Aside from the tears still sliding down my cheeks from the sedation, I show no emotion with this diagnosis. Vulnerability is not my strength. I thank the cardiac fellow for the information and not long after I’m able to leave to head home.
Once in the car, I promptly pass out for the ride home.
Later that night, while sitting up with my husband, I’m finally able to fully go through my day and process the emotions I’ve been feeling. For better or worse, my emotional freakouts are for his eyes only.
I cry and contemplate my mortality. I think of all the worse outcomes. I’m so scared to go back on a ventilator. What if I can’t get approved for another heart transplant?
I come up with a plethora of morbid and not funny jokes.
“Did you know in Washington it is legal to compost human bodies?”
“You can use that new pot we got as my urn.”
I know it isn’t nice to do this to him but I can’t help it. I’m seeking some control in a situation where I have none.
There is one night for a pity party…and then I move on.
Let’s Not Freak Out
I’m nowhere near needing another heart transplant. I have since talked to my transplant coordinator. Only a small amount of plaque was found. So small, in fact, that they didn’t even list a value but instead just put down ‘mild’.
We found it early. I started a new medication last week that will hopefully help with the progression of CAV for a long time. We can hope, we can pray but there really isn’t much left to do beyond that.
They don’t really know what causes CAV. There are no lifestyle changes to make. I’ll take my medicine on time, I’ll keep my regular doctors’ appointments, and I will keep living my life much like I did before I learned I had CAV. What else is there to do?