Consultation with Transplant team at Mass General Hospital

         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 team at Mass General as well.

 My next test will be done on June 20th in Portland. So as of the moment, we wait. We will be waiting to hear back from them regarding my case as well as the next steps going forward. 

 I still don’t know how to feel, it has yet to feel real and reality is starting to hit a little. Positivity and hope is all I can express right now. We will see when the real testing starts though. 🤞

I also do know one thing, I’ll be taking the train down next time. 🤪🫠



Comments

Post a Comment

Popular posts from this blog

Update with MGH - Transplant Evaluation 1

Image
       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...
Read more

Testing, Testing and more testing...

Image
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
Read more