Hello everyone! I would like to sincerely thank everyone for their generosity as I traverse this post-transplant life. So much has happened since the last update! During all of the chaos surrounding my very long hospital stay in 2024, I decided to go back to school and get a degree in social work. I am happy to say I have graduated with my bachelor’s degree and will be participating in the commencement ceremony on May 18, 2025! I am graduating with a 3.98 GPA!!

Also, I was able to connect with my donor’s family and have remained in close contact with his mother. Tammy came up here for Erik’s 33rd birthday and we celebrated it together. It was so nice to be able to say thank you in person! It was one of the hardest calls I had to make when I called to tell her that Erik’s heart was failing, but she understood and said Erik would be proud that he bought me 4 years of life.

But I have jumped ahead of myself….

The last update was about the issues I was having with clotting and bleeding at the same time. Although that is mostly resolved (still don’t know why this was happening!), I will still occasionally get a clot despite being on blood thinners and within the parameters I need to be. This has been extremely frustrating for my care team and me. I am still on blood thinners and probably will be for life. At least I have a home INR machine, so I don’t need to travel to get it tested. Last year, in March, I started feeling pretty bad. My CardioMems numbers kept increasing (my Mems unit wasn’t removed with the transplant…thank goodness!). Despite repeated use of diuretics, I could not get the fluid retention under control. Eventually, I landed in my local ER and was life-flighted to Cleveland (for the second time!). This was the end of April of 2024. We eventually discovered that my heart was failing. I was placed in the ICU (those nurses ROCK!!!) for the next 4 months. I was placed on a balloon pump, which ended up getting infected (oh I was so sick! Everyone thought I was going to die), then had a milrinone drip placed once the found out I could not have another balloon pump installed, I was listed at a status 2 with exception with UNOS, and I was going stir crazy!

Unfortunately, since the team did not know what was happening with my heart, they decided to be extra cautious in accepting a new heart. Even though I am AB+ (and can receive anyone’s heart), it was the antibodies they were watching closely. Finally, I was awoken about 0200 on August 21, 2024. I thought my sats had fallen again, but I was surrounded by the night nurses. My nurse had the pleasure of telling me that they had found a heart for me. Tentatively, surgery was scheduled for sometime around noon that day. I quickly called Lou (woke him up), and told him the news. As he was preparing to leave to head up to Cleveland, I was busy “cleaning” my room. A lot of stuff accumulates when you are someplace for 41/2 months! We knew Lou wouldn’t get up there in time to see me off. I did, however, get to “ring the bell”! (couldn’t upload the video, so you get a blurry screenshot LOL)

Of course, me being me, things did not go smoothly. I know bits and pieces. I know that they had to leave my chest open, then they had to go back in the next day because I developed a pericardial tamponade. They cleaned out clots and blood from around the pericardium (this is the sac that surrounds the heart muscle). Then, I still wasn’t responding very well, and they took me back in for an exploratory surgery. What they discovered was that because of all my surgeries, I had developed adhesions (scar tissue) around my inferior vena cava (IVC). They discovered this by ultrasound…I did not have blood flow between my liver and my heart. So, they had to go in and clean this out. (This is so rare that the docs that discovered it asked permission for and received it to publish a case paper in the Ultrasound Journal. The paper has since been published. The fellow who contacted me said that to their knowledge, this has never happened before.) Then, when I was starting to wake up, I was not responding appropriately, nor was I moving my right side. So, they began their stroke protocol procedure. Even though the CT was negative, even today, I am weaker on my right side than I should be.

Then the final blow happened a couple of weeks ago. Over the last couple of years, I have had increasing visual problems….nobody could figure out what was going on. I went to my neuro-opthalmologist’s appointment, and was told I am now legally blind. I still have central vision, but I have lost peripheral vision. That means I am no longer allowed to drive. There goes my independence! This is still so new, I am still processing what this will mean. I do have appointments set up with the Department of Aging and Rehabilitative Services (DARS) and with the Virginia Department for the Blind and Vision Impaired (DBVI) next week. I am hoping that DARS will be able to help me find a job and that DBVI can assist with this, too. I am still planning on getting my master’s in social work and working with the transplant population. In the meantime, the increased financial burden from the second transplant has put us in a pickle. Lou will be 71 next month, and is on social security. And I have been on social security disability for 4 years. Neither of these incomes meets our monthly outlay. I am hoping against hope, there is a job out there that I can do in the interim that will be willing to work with my erratic medical appointment schedule. Thank you all for reading and following my journey.

Thank you again

Debbie