The Draaaaaama

       

      

My life feels so different than what it had been over a year ago.  My energy at the beginning of 2023 and prior was pretty low, always carefully managed and rationed.  Now with the diagnosed 3rd degree heart block, it's half that.  I'm honestly past the point of being sad about it.  Past the point of feeling sorry for myself as everyone around me walks, talks, gets up, goes out and lives pretty normally without much thought.  I've cried all my tears, used up all my will to pretend I'm normal.  To look normal.  With heart and lung transplant looming in my future, I'm now just at a place of waiting.  Preserving myself and waiting.  But this is only if I CAN get a heart and lung transplant.  Even though it's a daunting procedure, one that I can imagine many people would be scared of, that I am scared of, there is still that chance that after all this testing, I can be denied.  And if that happens, death is certain.  So that is just a non-option for me.  That path is honestly the most scary, because I don't want to leave.  I don't want to leave my loved ones behind.  So transplant it is.  

There was a lot of drama in my last week at the hospital last month that I didn't mention in my last post.  I went over the story on stream so didn’t think to write it on the post, but I will now.  Prior to being put on the list for any transplant, you need to go through many tests and interviews to see if you qualify.  There is a weird window for someone to qualify to get a heart and lung transplant; you must be sick enough that you absolutely need the transplant to live, but healthy enough to survive the procedure and aftercare.  Of the two, procedure and aftercare, the aftercare is actually the most riskiest part.  And if we are talking about risk, the lungs are riskier than the heart.  This is because the lungs are open to the elements through breathing and are more susceptible to infection.  After the procedure, it is required of the patient to go to a series of follow-up appointments to check in on the lungs to make sure they are not infected, are working properly, that there is no rejection, etc.  We are talking about ALOT of appointments.  Like several a week and there is no way you can’t go.  You must go or your risk of death becomes very high.

          When I was being interviewed by my social worker, she asked about a time last year where I didn’t make some of my regular pulmonary hypertension appointments.  I was going through a pretty big depression at that time with very little support.  I wasn’t getting my meds because the pharmaceutical companies refused to give them to me (this is a long story) and I just wasn’t doing well, which is why I did some fundraisers on stream to help out.  My social worker was concerned that me not going to my appointments last year “may be of some concern” when the lung and heart team were going to speak about my candidacy of getting on the transplant list.  I thought that was fine as she didn’t stress the point and kinda mentioned it off handedly.  After our interview, she then went to meet with the teams and let them know what she thought of our interview.  As she was doing this, many nurses and doctors were coming into my hospital room performing a slew of tests.  They wanted to get all the tests done so I’d be put on the list as soon as possible.  

          As they were performing a couple tests, a doctor came in and introduced herself as one of the lung transplant team doctors.  She told me she had just spoken with my social worker and that she was rejecting me for a lung and heart transplant because I was “noncompliant” with my appointments last year, that I missed appointments and that I wouldn’t be able to do that if I got a transplant.  I tried to explain to her that was during a hard time in my life, and she cut me off saying that it didn’t matter and that she “trusts” my social worker’s judgment.  This made me think my social worker had told her she didn’t think I’d be a good candidate?  This was confusing to me because my social worker was always nice to me and I would think she would have told me to my face that she didn’t think I’d be a good candidate.  Also, there are many other qualifications for a candidate that she interviewed me for, which had no issues.  So I thought they would be looking at the whole picture and not just one aspect of my application.  I was distraught in the moment, the room of nurses and doctors fell silent as I tried to explain myself, but she refused to listen.  She then mentioned how I play video games at night and don’t wake up till noon and that I needed to make “lifestyle changes” before I was to be considered for a transplant.  I was shocked that she mentioned video games; literally what does that have to do with anything?  And I’m not young and stupid.  If I am going to go through something as daunting as a lung and heart transplant, I will be waking up early to go to whatever appointment they set up for me.  It’s not like I’m going to still be playing video games till the sun comes up and be like oops, guess I can’t go.  I was so confused.  They had records of my making my appointments with no issues, at least 4 years on record of me making these appointments, but it felt like they were judging me at one of the worst parts of my life rather than any other time, a time where I did have support (as I do now).  And to mention I was a gamer felt very judgy.  

          The doctor wished me luck “in the future.” She walked out the door as my heart crashed.  Another doctor then came in and told the other nurses and doctors performing tests that they could leave because all of the tests were canceled since it looked like I wasn’t going to be put on the list.  I felt like that hope I had that I may still live past my 40’s, that even maybe I can feel what it’s like to be somewhat normal, was dying.  What was I supposed to do?  The heart doctors were very nervous when they spoke to me; they were telling me I need this to live.  It felt like the lung transplant doctor was basically telling me that I can’t.  That I don’t deserve to live.

          After that, I kinda spiraled and wanted to leave the hospital because I didn’t see a point in staying if they had nothing for me, but loved ones were able to support me through this and got me to stay.  It’s a long story after this, but in a nutshell, the heart transplant doctors advocated for me and my need for a transplant and worked out a deal with the lung transplant doctors.  The deal was for me to be discharged and for the foreseeable future (2-6 months), I’d go to an appointment every week to basically prove to the lung transplant team that I can go to appointments.  The way they are framing it is, “building a relationship with the lung transplant team.” In my core, this feels very, jump through these hoops to see if you can.  But I’m trying not to focus on that.  It’s a lot and a bit pointless to dwell on, but goddamn, it is how I feel.   Right now, I’m just focusing on going to the appointments, what I need to do to get there, making sure I can arrive early.  Pretty much being perfect so they have no excuse to say I can’t be put on the list.  They keep saying this is all to build trust.  As I go to these appointments, their trust in me may grow, but honestly, my trust in them gets lower and lower.  The only things really keeping this hope alive for me in this whole medical process are my heart doctors, how they advocated for me, how much they understand how hard this all is for me and how they are rooting for me.  I am going because they know what is best for me and they are the ones I trust.

   

fds