Update with MGH - Transplant Evaluation 1

     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 back to doctors to finish day with a mental break down and a chat with the psychiatrist. (Of course I told him the wrong date during the verbal test 🤦🏼‍♀️)

    So yeah, long day…

Transplant Coordinator/ Cardiologist 

Transplant Pharmacy 

Lunch

Transplant Social Worker 

Lab work (20 vials later and I cried with the phlebotomist when she asked if this was for a transplant, but she did cheer me up by saying im in the best hands.) I totally regret not taking a picture of how many vials there were. 

And last but not least the psychiatrist, because definitely dealing with feelings at the end of the day is what I totally want *insert sarcasm* 

    So as of right now I'm still one evaluation away from knowing if I’ll be accepted on the list. No one said getting an organ was easy, let alone two. So for now I'm left with more questions than answers and that’s ok for now. 

    But yeah I'm not in the hospital yet, I can still mange to do things on my own, I can still drive, but I only have enough energy for 6-8 hours and yeah you probably think, hmm same here, but the level of exhaustion I feel is when I can’t get enough oxygen into me, the best way to describe it is being hit with a really bad case of the pneumonia, but that’s my daily life. My legs are the first thing, not being able to get up because you’re weak really sucks, but it’s not because I need leg day, it’s because my body is failing.     

    So I'm doing my best to stay positive, take things one day at a time, no stress and the next update will be when I know what’s going on. 

Upcoming appointments

CPET (Cardiac Stress Test) 😅 in two weeks