Mel’s Heart Journey

Heres to 31- this may be one of my more challenging years yet, mentally, physically and medically. So strange to think this could be the last year with the old ticker.   As I get closer to more appointments the more it sets in; -am I anxious? Yes -am I excited? Yes -am I scared? Shit less, yes I’m scared  I still don’t know much yet, my official evaluation is on August 7th at Mass General.   I am meeting with my cardiologist on Friday to discuss a new issue- maybe   a medication adjustment? Feeling nauseous and dizzy when your BP gets high is definitely not a good sign.  Oops…. Let’s just hope it’s my panic disorder coming back….. kidding (kinda hehe)

 July 9th Our healthcare system is broken. Being ghosted by doctors is truly frustrating. I was called by Mass General back in early June to go over the next steps and set up a date for an evaluation as well as meet with the adult heart failure team over there as well. I was told I’d receive a call the next day. So I waited, I gave it a week, you know because doctors are very busy. Then I called the office, and his NP, weeks go by many messages left, nothing… I requested an appointment online through my chart… still nothing. So I wait, and wait some more as I get weaker day by day. This definitely has taken an emotional toll on me, when people ask what’s next I fear, I truly don’t know. My light is dimming day by day, the fear of not seeing family or friends again sets in, the anxiety is there, unfortunately all I know how to do is disassociate from reality.  I still have hope for now, but man this shit is tough. 

            I  Met with Dr. Mastoris (MAH-Store-is) at Mass General Hospital on May 30th. He was very nice, very smart and from just looking at him I could tell I was in good hands, I mean he is a Harvard Med alumni.    We talked about what was happening and what we would be looking at broad spectrum-wise. We talked about meeting with a team to determine my case but we were most likely looking at a double transplant, heart & liver. Due to my congenital condition, my liver has been severely affected due to overcompensating my wonky heart.   Some questions were brought up and needed a bit more information;  What can happen safely? What needs to happen?  What are the other organs doing/compensating for? Can it be done safely?  How many organs are affected?    We also discussed moving forward with a liver biopsy and meeting with a specialist at Mass General. I will be meeting with an advanced heart failure t...

I have undergone several tests for the past month, including a pulmonary function test, blood tests, and ultrasounds. On May 30th, I will finally meet with the heart failure and transplant team at Mass General. So much is still uncertain, but I'm hopeful this meeting will give some answers to my situation and provide a game plan. I've managed to stay positive mentally, but I feel anxiety starting to creep in. This is likely because I like routines, and heart failure doesn’t accommodate that.  I have begun to notice myself weakening more, and the reality of that hit me hard. But I'll keep on pushing because I still have a bunch of places to see.  Photo from DC trip 2025

       I met with my Cardiologist for a follow-up from the cardiac catheterization I had a few weeks ago. We began the appointment with the usuals: ECHO, EKG, BP, and O2 check. We talked about being referred to the Heart Failure Specialist through Maine Medical Center and contacting the transplant team in Boston. Taking into account the worsening symptoms and hemodynamics, we discussed referral to the heart failure and transplant team in Boston.       The family and I are in agreement that exploring this option makes sense at this point. We talked about the many factors that go into determining transplant candidacy, and my complex underlying anatomy may complicate the logistics of a transplant, as well as the collateral burden. We also discussed that some centers will opt for combined heart and liver transplants in those with Fontan physiology. We are aware that I may not be a transplant candidate due to my abnormal physiology.     ...

       On April 9, 2025, I arrived at Maine Medical Center in Portland for my routine cardiac catheterization. My last procedure was in 2017, and my Fontan procedure had been stable, so nothing needed to be done or corrected.      As we prepared for the procedure, everything went as planned. It did not take long, but the results were not what we had hoped for: my Fontan was failing. The pressure in the Fontan was high, and when that happened, collateral veins formed to direct oxygen into a dead-end pathway. This results in less oxygen being delivered to the body, significantly affecting my quality of life.      I was informed that I had a large network of collateral veins in my left lung, resembling a bird's nest. Normally, we would go in to stent and coil off these collateral veins, But this time it was deemed too risky, especially given the high pressures in my Fontan.      While the news wasn’t a complete shock, I had s...