As CHD Awareness Week begins on Monday, I want to share a chapter of my journey that’s been mostly private until now — it’s been almost a year since I’ve written anything more than a shopping list. In my last post, I talked about the struggle of receiving the right healthcare services and compared it to a Cleveland Browns football game.
That comparison is still valid, and I’m still struggling with everyone (doctors, hospitals, Medicaid, and financial advocates). You name it, I’ve talked to them. However, I’m no longer looking at hypothetical situations for my health. I am officially IN IT.
In April, I went to Columbus for my routine stress test. After the appointment, I met with one of my doctors, who is also a member of the Cardiovascular Transplant Program at OSU Wexner Center in Columbus. Of course, we discussed being listed for a heart transplant.
He felt it was the right time to present my case to the team at OSU, but before he could do that, he wanted to confer with my sister and me. We discussed where and when (we already knew why), and then we went home. And waited.
And waited.
Spring gave way to summer… By August, I had a right heart catheterization procedure to measure pressures and my heart’s pumping ability in the right atrium and the right ventricle. The nurse wouldn’t let me keep the catheter that was inserted in my groin for the procedure. He did, however, let me take a picture of it. (I’ve decided to save that picture for my scrapbook.)
Then I waited some more.
The Pacemaker Saga.
I met with my ACHD team for my annual appointment in October and learned it was almost time to replace the pacemaker. However, Ohio Medicaid wanted to wait until literal warning bells started going off in my pacemaker. To them, it meant the battery was dead enough. To my team, it meant I could be in trouble when the battery really stopped working. I’ve let that happen a few times.
Since the ACHD team had me where they wanted me (Ohio), they didn’t want to wait until then. For a month, my electrophysiology nurse (my favorite one to be exact) collected weekly pacemaker device downloads and continued to send the pre-authorization to the insurance, waiting for them to approve it.
The pacemaker replacement finally happened in November. It was an outpatient procedure. I had a place set up to stay overnight in case the hospital didn’t need to admit me. It was the first time I’d ever had this surgery without family in tow. It was different, for sure, but not unbearable. Aside from one of the nurses not being able to get a vein for the IV, it was uneventful. (Not surprised — the heart cath nurse had the same problem.)
During all of this, the OSU transplant team was meeting and reviewing all my information and history to see if I would be a good candidate for transplant. And while they reviewed, I made appointments for colonoscopies, and other routine appointments that we half-century folks need to endure.
Blood and Tubes and Tests… OH MY!
To close out 2025, my sister and I made the trek down to Columbus to meet the OSU transplant team. My sister took notes while I nodded and was poked, prodded, and breathed for the doctors. At the end of it all, we shook hands and confirmed that I am a good candidate for a heart transplant.
OSU Wexner, not one to dilly dally, promptly sent me to the lab where they took 34 tubes of blood for over 50 different tests. There was no warning. I walked into the lab and almost walked right back out when I saw how many tubes were waiting.
The lab tech was amazing. I asked if she’d be available the next time they needed a quart of blood from me. She laughed, my sister, laughed, and I waited for an answer. The vein she went into gave out with four tubes left to fill. I now refer to it as the little vein that could… almost made it.
The next vein boycotted the needle with a firm, “hell no”. The third time was the charm (in the opposite arm), and my trusty lab tech succeeded in getting 34 tubes of gold from me. After we left the hospital, my email blew up with more test results than I even knew existed.
And now? Folks, we are only two months into 2026, and I’ve had two CAT scans (no cats detected, I suspect the cat distribution system is broken), two ultrasounds for my femoral arteries, a pulmonary test, and a 6-minute walking test. I still have one more ultrasound for my carotid artery.
The Road to Being Listed for a Heart Transplant
But I am in no way finished with testing. There is a transplant education class that I must take, another round of meeting heart transplant team doctors and surgeons, and every six months, I undergo a right heart cath procedure. I’m not including the additional tubes of blood they will be stealing or the constant urine screenings and drug testing throughout the transplant listing process.
I’ve only scratched the surface of life updates. I wish I were more consistent with sharing the updates with you. Instead of getting a yearly update like distant, extended family during the holiday season. Most of these life updates revolve around my physical health. My mental health seems to change with the wind. One day, it’s a light breeze, and another, it’s tornado-level wind gusts. I’m doing my best to contain it.
I can share this: the organ transplant evaluation process isn’t for the faint of heart. (See what I did there?)
CHD Awareness Week is a reminder: adult CHD patients exist, and our stories matter. I hope sharing mine helps someone feel seen — because every story deserves to be heard.
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