Tag: heart disease

Rehab Day 1

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They tried to make me go to rehab and I said, “Hell yes! Finally.” Not exactly as catchy as Amy Winehouse but sometimes the truth isn’t catchy. Today, I completed intake for 36 sessions, 14 weeks, of cardiac rehab and I could not be more thrilled. Over the last few months I have tried working out on my own only to run up against the same issue, time and time again. I just get scared. I know to you heart-healthy people that is an odd issue to have, but there comes a point where I don’t know if I am pushing myself or pushing my luck. When that happens I find myself giving up, too scared to keep going. That is why when I saw my doctor last month I asked if I could do more cardiac rehab, and he approved. I knew I would be rolling the dice with insurance whether they would approve it for me or not, and was prepared to only have 6 sessions if they did. Getting 36? A full course? I am so excited. It feels like I finally won a battle after a long, long losing streak. 

There are so many benefits of cardiac rehab for me that go beyond just the customized workout. For one thing, the scheduled appointments assure I will actually attend. It is far too easy for my brain to talk me out of going to the gym, there is no accountability, and I can justify just about any reason to skip. Conversely, I don’t miss appointments, I am the person who is early to everything. The structure of these sessions will be great for my ADHD brain. They will also give me a safe place to feel for my edges, to learn better what my body feels like when I am entering the danger zone, and when I am just pushing. Learning this will hopefully help me when working out on my own, to have the confidence to continue. 

Things I love about cardiac rehab: 

  1. Old men exercising in jeans. I would say 90% of the people in cardiac rehab are men over the age of 60 (heart attacks likely), and of those men 90% wear jeans to work out. It cracks me up. 
  1. I am a unicorn to them. These nurses are used to working with the aforementioned old men in jeans with acquired heart disease and a tendency to push back about all the lifestyle changes they are being asked to make. Not me, this has been my life for 41 years. They aren’t asking anything of me that hasn’t been asked before. Plus, both this time and last the nurses remarked about enjoying learning about my heart, and seemed very amused by me in general. I love being amusing, and I am happy to provide a little break from the old dudes. 
  1. Sonic ice! I love it. Who doesn’t love Sonic ice, that they can access for free? 
  1. Constant feedback on my heart while working out. Blood pressures, BPM, pulse ox, they check it all, and tailor my work out to what my body tells them. 
  1. Help from an honest to goodness nutritionist on tailoring my diet to better serve me. I do a good job with this but guidance and feedback are so nice. 
  1. This is a medication free way of regaining some of my lost heart function and I am all for anything that doesn’t require another pill. 

I start my first real workout tomorrow and am so excited to begin. If you see me, please ask me how it is going, or shoot me a message. I need all the encouragement I can get, exercise has long been something I feared and gave up easily on. The more positive reinforcement I can get the better!  In fact, one of my questions on my intake paperwork today was about my support system. It wanted to know if I had anyone I could call if I needed support. I didn’t have to think about that question at all, and marked that I had MANY people who I could call if I needed. I truly believe that has always been my magic feather so to speak, and lets me keep flying. Thank you for that. 

Bad Ass Zone

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I once thought,  if not for my heart disease I would want to be the kind of person who might try to climb Mount Everest. Recently, I have been thinking that I kind of have been climbing my very own Mount Everest for the last 41 years. It seems like I climb for a while, spend a good stretch at a base camp, climb some more, get to another base camp, chill out, wait, and repeat. No one climbs just to hang out at different base camps though, and eventually, you are going to have to push for the summit or decide to go back down. I just realized that if I am going to continue to use this metaphor I would have to refer to this next part of my “climb” as entering “The Death Zone” and that seems a little too dark even for me, so let’s all pretend that the world calls the tippy top of Everest “The Badass Zone”. In fact, perhaps we should encourage all climbers and the Nepali people to start calling it “The Badass Zone”, no need to keep with these self-fulfilling prophecies, in fact perhaps every body still on Everest is a victim of the Pygmalion effect. What was I saying? Oh right. My own Everest, entering the newly named, hopefully to be adopted “Badass Zone” because regardless of how often I roll my eyes at her, I am listening to my therapist and I know our thoughts are important and even if I did think it was funny, we should not call it “The Death Zone”. I digress. 

I hear you, “Monica, what are you prattling on about, would you please get to a point, or even start your update!” I suppose, but I want you to know, you are a buzzkill. 

Yesterday, I had yet another appointment in Omaha for testing with my heart failure (trying it’s best)/transplant team. I underwent a heart cath which at this point is almost, dare I say, run of the mill for me. The worst thing about it is being NPO (Nothing by mouth, I guess in latin it is nil per os, you learn something every day. It means no eating for me.)  for 12-15 hours beforehand. It is minimally invasive, a poke in the neck and then a “lookie loo” with probes in a vein into my heart. I stay awake and communicate with my doctor the whole time. Here is the part where I remind you I love my doctors. I especially love my cath doctor, he is just a fun guy and I bet he would be fun to take to bar trivia. Since I am awake he makes sure I am “included” as much as I can be in the procedure and he isn’t just talking about me right in front of my draped face. I’m rambling again aren’t I? Anyway, I had my “lookie-loo” and honestly things looked a lot the same as they had before. Unfortunately, they didn’t look great before and I am more symptomatic than I have been. 

I shouldn’t have been surprised to see my heart failure (trying it’s best)/transplant doctor, Dr.B after my cath, but there I was, surprised when he popped in unexpectedly to talk to us about what he thought this all means. Have I mentioned how much I love my team? We were not meant to see him, and this conversation could have happened in a MyChart message or through a nurse. When my mom started smiling and saying “Hello!” to someone in the hallway like she knew them I was really confused because we don’t know people in Omaha. We do know Dr. B though and he came in to tell us what he believed to be true. Yes, I am stalling. Basically, things do look the same, however other tests don’t. My cath results don’t agree with my stress test results for example. What he figures is, that while I am chilled out, listening to music, gabbing with Dr. D in the cath lab, my heart pressures are my baseline (I can’t call them normal, these numbers aren’t normal). If I were to do an exercise cath however, (Yes, that is a real thing, and they make you pedal while you’re on the table with a probe in your neck! That is a circus act I would like to see but not perform.) he believes my pressures would shoot up to 3-4 times what they are at baseline, which would make me feel terrible with exertion (accurate) and the other symptoms I am experiencing. He could ask me to perform this circus trick but he doesn’t think he needs to and have I mentioned how much I like him? It is because of this, and the other testing that I have had recently, and in the near future that he is going to present me again in the next couple of weeks for consideration for transplant. He believes it is time to “push me forward” and I have to trust that he knows better than I do when that time will come. I stalled just writing this paragraph. Can you imagine how long I would drag my feet on doing this thing?  

When he left the room, I looked at my mom, a little stunned as I always seem to be when movement on transplant comes back up. It is kind of like a jack-in-the box, I know it is coming but it is a surprise every time. 

“Huh.” I said. “I guess, I really am going to get a new heart.”

She looked at me a little dumbfounded and asked “What did you think we were coming here for?” 

“I’ve been coming for the turkey sandwiches.” I told her. Holding up half of my doughy, white bread turkey and swiss sandwich. I, of course, was joking but those sandwiches are somehow the best food on the planet after being NPO. They stick to the roof of your mouth, and are a choking hazard but they hit the spot. 

So, that is where I am for now. On the precipice of being recommended to be listed once again, and at the mercy and wisdom of the transplant board, and likely entering the “Bad Ass Zone” of my personal Everest. Whatever they decide will be the right thing. I have full faith in that. Meanwhile, I have a bunch of appointments this month for more tests. Have to keep those bad boys up to date you know. Oh, and…this is fun, in the middle of all of this I have just a touch of skin cancer (nothing serious) that I have to get removed with margins. I dunno all the cancer lingo, I am a heart patient dammit, but I am assured it is nothing to be overly concerned with and I will be getting a good chunk of skin removed and a few stitches in the next couple of weeks and I will be right as rain. It honestly made me laugh when they told me. Of course the weird little spot under my arm was skin cancer, what else would it be! As always, the adventure continues and I will keep you updated as it comes.

One More Time With Feeling

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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.