The thing about roller coasters is, after a steep drop and a straight away, they like to throw in a loop. The drop? My first appointment with the heart failure and transplant team, almost exactly one year ago to the day. The straight away? The holding pattern I have been in since then, where I test and I check-in and re-test and re-check. And now the loop, I am not going to say my last appointment was terrible, but I can’t say that it was the best I have ever had. I know the reality of congenital heart disease and congestive heart failure is more than likely a gradual decline over one’s lifetime. I have never expected to walk into the doctor’s office for them to check the tests and exclaim “You’re cured!”, my brain hasn’t even dared to dream that scenario so I am pretty sure I am on good terms with reality there. However, it is never easy to hear that you seem to be in a bit of decline, and it is even harder when both you and your team know there is very little to be done that we aren’t already. 

As I discussed in my last post, I was going into this appointment ready for reckoning, knowing that I have not been able to keep up with exercise since I have been back at work. I have gained back some weight I lost and am generally not where I had hoped to be at this appointment. I was ready to face the music. The music came I suppose but it wasn’t the tune I was expecting. My doctor is a lovely human who is always as gentle as he is frank. He was not at all shocked that I found it next to impossible to carry on the exercise regime I had been, and work full-time. He reminded me that based on my testing, I am “exercise intolerant” and “disabled from a cardiac standpoint”, he also reminded me that he had played all of his cards already. There are no more medications, I am on them all, and the highest doses. There isn’t another device (well there are a couple but no thank you, trust me) that is better than what I have. There really isn’t any more that the team can do short of transplant and he and I agree that we still want to keep that as far in the future as we can push it. 

Where does that leave me? Well, here comes the loop, the thing I was not at all prepared for – it is time for me to scale back my work load. It was a punch in the gut, almost more than the thought of transplant was. I know I complain about my job, it is true, teenagers are a pain in the behind, but they are also just complete dorks who make me laugh and can be super sweet and innocent, and so funny. I love what I do, I love working with kids who need a little extra love, a little extra help, and watching them learn and grow. Yes, sometimes they challenge me on the dumbest things, and pick weird hills to die on (as a matter of fact they will complain for longer than it takes to actually do the assignment), but dang it if I don’t enjoy the stubborn cusses. 

My doctor went on to explain that while he cannot add more hours for rest, and exercise into my day, he would like to suggest reallocating the hours I do have to best serve where I am currently. He knows I try my hardest with diet and exercise but I am limited. He knows that when I have the time to do what I am “supposed to” I do it religiously. So the proposition was, can I reduce my workday enough to have time to work, exercise and recover all in 24 hours without burning myself down to the wick. If I work five hours a day, instead of seven, can I do cardiac rehab, rest and recharge and repeat? You might be thinking, shouldn’t you use that extra time to JUST rest? Actually, no. For reasons I won’t go into because they kind of feel icky and weird, the size of my body at the time of transplant really matters. It isn’t in a fat shame-y way, it is in the best outcome kind of way. My fitness, and body size have a direct impact on how transplant and recovery will go, so it is also my job. I need to give it the same kind of time I would give a job, it could literally be a matter of life and death. Plus, there is the added benefit that there is still a chance that maybe, just maybe losing some of this pesky weight will make me feel better enough that I can put off transplant for a while longer, maybe even feel well enough to go back full time even before transplant happens. 

I have gone through the full spectrum of emotions this week about this. I did not want this to be the answer. I did not want to take more help than I already have been, from my family, from my friends, from my co-workers. I did not want to admit that the chronic “not feeling good” is actually the advancing of my disease. I have been angry that the systems in place to protect people in times like these are so fully protected by red tape, and that there are so many catch 22’s when it comes to what is best for a person’s care. Catch 22’s about insurance, where to get it, who can get it, who decides what, and why it never seems to be the doctors or patients. I have had a few break downs, deep profound sadness, feeling of loss, and mourning. I know I will be okay and that this is the right choice but it isn’t one I was planning to make and I have never been keen on my circumstances making choices for me. 

All that said, I leaned in. I marched my happy butt into the powers that be and I told them my situation. I asked for their help and they gave it, they will continue to give it. There are still some things to iron out and I found out along the way that I have some more big feelings to work on, but for right now I know that things will be okay. Monday I start my new reduced schedule, and get myself back into my self-led cardiac rehab. Coming out of the loop, I have some curves and hills to get through in the next few weeks. I will do a heart cath in the next couple of weeks, along with repeating some of the heart transplant testing to keep it current. After that I am hoping for another straight away.