My heart transplant saved my life but it was not a cure-all for my health. Making sure that I am constantly aware of how my body is functioning is a must. I have to do what it takes to live the longest life possible with my donated heart. One of the many things I have to do to keep this body going is making sure to attend regular check-ups with my cardiology team. One of my most important check-ups is my annual heart transplant check-up. These typically consist of two full days of clinic appointments and procedures. These days are exhausting but, if everything turns out positive, are extremely reassuring.
Last week I had my third annual heart transplant check-up and documented the experience in my Instagram stories. To give the experience a bit more of a permanent home, I am going to share it here as well along with a little more context.
Wednesday, February 17, 2021
9:30pm
The day before my annual heart transplant check-up, and sometimes a few days before depending on the time of my blood draw, I have to adjust my medication. My medications, most importantly my immunosuppressants, have to be taken 12 hours apart to ensure I have an appropriate amount in my system.
On a daily basis, I take my morning medication at 9 am and my evening medication at 9 pm. Since blood draws cannot always be scheduled for the same times that I normally take my medicine, I have to alter my timing. This is vital because one thing they are measuring in my blood is my tacrolimus trough. A trough is the lowest concentration of medication in the bloodstream. This means that I need to take evening medication exactly 12 hours before my morning blood draw. When I do this, they can make sure my levels are within the appropriate range.
Tacrolimus is an immunosuppressant that keeps my body from rejecting my donated heart. If the levels of this medication get too low in my system, I could experience rejection which could result in serious consequences to my health including death.
Thursday, February 18, 2021
6:00am
I get up early to prepare for the long day ahead. With rush hour we have about an hour and a half drive up to Seattle. We bake in an extra 30 minutes to be safe because I don’t want to be late for my timed labs.
To keep me entertained while spending the day at the hospital, I pack up my computer and Nintendo Switch. I hope to finish up some editing on the amazing Heart Stories I have been receiving. We will see how it goes, I usually go into my hospital days with big plans for things I can get accomplished and then don’t get much done. If I am feeling lazy, I will also have my phone and AirPods so I can listen to podcasts. Topping everything off, I have my Thursday pillbox.
9:00am
We arrive at the hospital with time to spare for me to check-in for my blood draw. I always find it a little strange how comforting I find my hospital. The worst moments of my life happened here. I guess in that same vein, however, the most heroic people saved my life here. It is conflicting but my ultimate feeling is one of safety and calm.
9:30am
I’m called back into the blood draw area, roll up my sleeve, and have nine vials of blood taken. There are a few extra this time compared to other times because I am a part of a research study and I’m also getting Allosure. Allosure is a blood test that can help determine if there is rejection. These blood tests don’t work for everyone but it would be a nice alternative to the more invasive biopsies.
The blood work result I have most recently been very interested in is my creatinine level. This measures how well your kidneys are working. For months my kidneys’ performance has been trending down. Needing a new kidney after a transplant is not uncommon but is not a route I would like to take any time soon.
After my blood draw is complete, I take my morning medication with a sip of water. Since I am having a biopsy, I cannot eat or drink anything. Luckily, it is my first procedure of the day so I head over to the Cath lab to check-in.
9:45am
To keep the Cath lab moving, patients at my hospital have to check-in an hour before their scheduled procedure. This usually results in a pretty long wait in the waiting room prior to the procedure, especially if there is some sort of delay on their end. Today, however, they are running ahead of schedule I’m called back an hour early.
When I get to my room in the Cath lab, a hospital gown, pants, non-slip socks, and hair covering are waiting for me. A nurse then comes in to ask me a series of questions and takes my vitals. I have paperwork to sign for the procedure and then I get a Valium. The first biopsy I had, while still inpatient, I had IV sedation. After feeling a little sick after IV sedation, however, I switched to Valium for a while before not using any sedation at all. I had several procedures without any sedation but after one of my biopsies was a little traumatic, I switched back to the Valium.
10:45am
I pick up the bag they have given me to carry all of my stuff and walk to the Cath lab for the procedure. After laying down on the table they begin covering me up with different sheets. They have the Bair Hugger which is a tube that forces hot air under the sheets to keep you warm during the procedure. I wish I had one of these at home!
The Cath lab team then places a sheet over my face and prepare my neck for the right heart cath. This procedure measures the pressures in the heart. When the doctor arrives, they numb me up and it is time to start the procedure. The doctor guides the special catheter along the right side of my heart. After the doctor has called out all of my measurements, the next step is the biopsy.
Still going through my neck, the doctor maneuvers the catheter to my heart where a device with jaws on the end snips off pieces of my heart. Ideally, they try to get a few large samples. Good samples will give the best results in determining rejection.
Every doctor who has down my biopsies is a little different but this one was super fast and I felt comfortable throughout the procedure. When the procedure is over, the Cath lab team clean up the wound on my neck and take my blood pressure a few more times before I can leave. From there I go get a chest X-ray to make sure everything still looks like it should. Finally, I’m allowed to get dressed and move on to my next appointment.
This post is getting very long so I’m going to split this into two blog posts. I’ll be posting part 2 of my annual heart transplant check-up soon which includes the rest of my day following the biopsy and the next full day appointment for my left heart Cath.
My brave girl! Love Mom. ❤️