Mel’s Heart Journey

 Hello all, another update Mass General Hospital called me to set up the evaluation date for my liver transplant, which will be on October 20, and another all-day appointment. I am hoping that having two transplant teams doesn't get as confusing as it sounds, but I'm glad I am in very capable hands.  We went over just the basics for that appointment, which will require me to meet with the transplant surgeon, nurses, and doctors, as well as the coordinator and social worker. So it's very similar to the steps of the heart transplant, but very different at the same time, so it'll be an experience. As of right now, I am scheduled for quite a bit of my time in Massachusetts.  So if anybody has any idea of good soups, pasta, and or home comfort food while I'm down there, let me know. At this point, I'll eventually become a Bostonian, but we're not there yet. 

   Hello all,    Just an update for everyone who follows this blog. I had my stress test done at Maine Medical Center on September 15th, as well as a pulmonary function test. Those tests are required for my evaluation for transplant, so they had to be done, and I'll probably have to do a few more of those as time goes on. I got a call from my first cardiac catheterization, which they will be doing to see if they can close up any of those collateral vessels in my left lung, so that when surgery comes, not so many complications will happen. I will also be having a few more of those before the big surgery. It'll all depend on how I recover and recoup. Unfortunately, we are still a ways to go as I've only met half the specialists that I need to meet so far. Many people don't understand that transplant evaluations take a lot of time. So as I wait for those appointments, I try to continue to stay busy with little hobbies and projects on the side. I am unfortunately not wor...

       I don’t even know where to begin or to explain it’s still all so new and still so confusing. I had my first evaluation for transplant candidacy on August 7th (still waiting on the schedule for part two). These appointment days are longer and more exhausting, overwhelming, overloading. I could go on and on about it but I won’t because that in itself is exhausting.       My brain feels foggy af and words are harder to remember, it’s a really weird feeling, I use to be so quick and sharp… oh and such a smart ass. I think the hard part is watching these things fade away as I grow weaker by the day. But, I'm still managing on getting by each day. Positivity and projects have kept me going.       My evaluation day was long, 8:30 AM to 4:00 PM an hour lunch, back to a different doctor, then to the lab that’s on the other side of the hospital (I’ve only seen one wing of Mass General Hospital and I’d get lost af in there) then ba...

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