If there is anything I have learned through this whole process it is that I shouldn’t bury the lede, so here it is, after being presented for a second time, my case for heart transplant remains on hold and I have not been listed. I am happy with this decision. I find I am only unhappy in the absence of a decision,  floating out in purgatory not knowing what comes next. This is actually good news in its way, this means that I am stable and strong, and I can keep going without a transplant. Once again my weight plays a large factor in this decision, and I am again not angry about that, though I am a bit annoyed I didn’t have a shot at my new medication for a while before my case was presented. 

About a month ago I was put into a program sponsored by the hospital and the heart failure clinic to get Wegovy at no cost to me because my insurance will not pay for any of the weight loss medications. There are good indications that this medication can help significantly with chronic heart failure but as of yet this would be an “off label” use for the drug, thus the program through the heart failure clinic that is very interested in its potential to help its patients, prolong lives of those waiting for transplants, and possibly eliminated the need all together. (Let’s not dream too big just yet.) All of this is great, however if you have read anything about these medications, especially this one, they are in short supply and I HAVE to get this medication, and it HAS to be through their pharmacy. They have not had any of the lower doses since September. I have been chilling at number 87 on a waiting list for when they get the medication in, however along with today’s news they also were able to bump me up to first priority on the list. 

Hopefully, I will be able to start this new medication soon and it can help jumpstart the weight loss I have been unable to achieve on my own with my limited capacity to exercise. Best case scenario is I lose weight and feel so much better that I can go back to work full time, and I feel better than I do now, well enough to perhaps push the transplant talk back another year, 18 months or two. I am hopeful but not naive, I will control the things I can, my diet and exercise and try to let go of what I can’t, when/if I get the Wegovy. 

It has always been hard to explain this place I am in. My heart functions at about half the capabilities of a sedentary adult, and about a third the capability of a fit adult. On paper it is REALLY bad. In my day to day it isn’t great but it has been such a slow decline over the last 41 years that it isn’t shocking, super scary and sometimes it isn’t even THAT different that what I have known my whole life. It isn’t like I woke up one day and was suddenly unable to go up and down the stairs without feeling faint, that has almost always been the case, it is just more frequent and with fewer stairs now. When people suggest things to do, I used to be able to decide I wanted to do it and power through even though it would mean I would be tired and weak the few days after, now I just have to say no because they are not feasible for me to push through. Most days, I am very tired but I am okay. I live a low key life and sometimes do things I know will cost me, just to prove to myself I still can.

Today in therapy, I was telling my therapist that I think my current point of growth is going to have to be accepting where I am, but like, actually doing it. I know I am at a limited capacity, but I don’t like being the one who has to change a plan or cancel, etc. I have never liked calling myself disabled but more and more that is how my doctors refer to my condition and how I experience life. It is time to start taking the help that is available to me and perhaps ease some of the challenges I face day to day. Apparently I don’t have to just be stubborn and figure out how to do everything myself? Seems fake but I guess I’ll try it. It may be time I start renting mobility aids when the situation calls for it (Omaha Zoo I’m looking at you)  so I can enjoy myself AND still function the next day. Perhaps, I let go of my compulsive need to do my own grocery shopping and let it be delivered 2020 style again. Maybe, just maybe I don’t say “I’m good.” every time a friend asks if I need help with anything, when in reality I just thought of five things I am trying to figure out how to do on my own but know I will struggle with. Anyway, this is all a long winded way of saying I am stable and I am strong, and I will keep doing my part to stay that way, and if that changes, the plan will change too, and I promise, I will tell you.