Tag: heart transplant

Me vs. Myself

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“Man vs. Self: a literary term that describes a character’s internal conflict, or the psychological battle they face within their own mind.” 

Yup, that’s me, stuck in a literary conflict in the real world. I bet you’re wondering how I got here, all tied up in knots and battling nothing but myself. Allow me to take you back dear reader, to one month ago. I was super stoked to show off my weight loss and health progress to my transplant doctor. He was super stoked at how awesome I am doing. I rode that high for a couple of weeks. Then the undercurrent of that appointment started to nag at me a bit. 

You see, during that appointment we talked about how awesome I am doing. We also discussed how much better I am feeling. We decided together to get some data to back up all of my hard-won progress. This dear reader, is when I kind-of-sort-of allowed my brain to turtle out of the conversation. I had heard what I wanted to hear. There was no need to listen to anything else or absorb it. Right then, into my metaphorical shell I went. 

There is nothing wrong with data, I personally love data. It’s hard to argue with data. Data shows me that what I am feelings is real. I haven’t just convinced myself and others that I’m fine. But am I fine? That is where the test comes into play, and that is why in that moment, into my shell I went. 

One month from today I will repeat the dreaded VO2 max test. I will put on the scuba mask and hop on a stationary bike. I hope to prove to my doctor and myself that I have succeeded. That I have done what they told me I couldn’t. I exercised my way out of needing a transplant. 

My VO2 max has been around 12 for about 3 years. According to my transplant doctor, this is the lowest they like to let people get before listing them. My team first started gathering this data with transplant in mind in 2021. During that year, I did poorly. We called it a scratch because I had just spent the last year inside my house and was “de-conditioned”. In 2022, I did the test again. Once again, I stunk up the room. It was at this appointment we called 12 my baseline and started talking about transplant. 2023, rolled around and the test was kind of the put up or shut up test. If I did not do any better than 2022, then I probably wasn’t just de-conditioned in 2021 but instead have advanced heart failure and we needed to start talking seriously about transplant. Can you guess how I did in 2023? That is right friends. I actually did the worst of the three tests so far. Things were not looking so hot for our hero. That kicked off transplant testing. As we all know from following this story so closely and never forgetting anything, the first time my case was presented to the transplant board, I was denied. In general I was still too healthy to list. This was actually good news. Eight months later, I struggled to work a full day. I was sick pretty much all the time. My case was presented to the board again. Once again, I was denied. They largely considered me too large, my weight was a problem. They did not think I would be a good candidate. They also doubted I could get a good enough heart at that weight. (There is a whole size equation that comes in to play, I’ve explained it before, I can’t want to explain it again.)

It was after that major disappointment that I begged to try something, anything to feel better. The answers were, work fewer hours, and start cardiac rehab. Check and check. I have to admit I was dubious about these solutions. I had been told word for word “you can’t exercise your way out of this.” Looking back I can see this statement was really traumatic for me. In the moment it was just a bit of a gut punch but now, it rings in my head daily in the way that only the most terrible things can. 

So, in March of this year three months after being denied for listing, I started cardiac rehab, and wouldn’t you know it…I started getting stronger. I also started a weight loss program, with help from both calorie restriction and a weight loss drug. Here I am seven months later. I’m inching towards 40 pounds down and feeling better than I have in years. I’m still working out three times a week. My muscles are coming out of retirement. In 30 days time, I will repeat the test that has bested me for the last four years. 

Here’s the rub, and the sentence that caused me to turtle out in my mind at that appointment. If my test is better, that is awesome. It is proof that my hard work paid off. We can delay transplant. If the test is the same, or worse, we have to talk about transplant again. This time my weight isn’t going to exclude me. To be fair that was the goal of cardiac rehab and the weight loss medication. The goal was not to slim me down for vanity’s sake. It wasn’t to get me swole. It wasn’t so I could live happily ever after with no worries of transplant. The goal was to slim me down, get me healthy enough that I could crush a transplant and come out the other side. The goal was to put me in a position where the hearts that I would be offered, were hearts that could go the distance with me. Along the way I found myself leaning into a new goal, delaying transplant, and doing what they said I could not do, exercise my way out of heart failure.

So that’s where I am right now, that is the internal battle I am fighting. I know what the original goal was, but along the way I found a new one. I feel like I am going to crush the VO2 max. My stamina is better than it has been in a very long time. However, data and feelings are two different things. Data talks louder than words. There is a chance that my VO2 max is still 12. There is a chance that when those results come in, we will be once again, having a serious talk about transplant.

I can’t lie. I will be crushed if that is the case. I have worked so hard. Not improving would devastate me. I am “training” really hard at the moment, specifically for the test. My workout at the gym is mainly on the kind of bike I will be tested on. I have to say, it is kind of kicking my butt. I can’t go longer than eight minutes right now. My heart rate gets too high, so I have to pull back. I worry I have tricked myself. I might think I am doing better because I haven’t actually been challenging myself much. It is me against myself right now. I am using all of my therapy tools but sometimes we just have to feel our feelings good, bad, or ugly.

 I have a dream of hitting 20 for my VO2 max, if I hit 20 I have told myself I can get a new cat. I haven’t allowed myself to even think about a new pet since Gus. I knew that if the transplant went forward, it wouldn’t be fair for the animal. A VO2 max of 20 would give me an 8 point buffer between me and transplant. Hopefully, I would be able to maintain it and put off the transplant for at least another 10 years. My doctor also hopes for this outcome.

My reasonable goal for my VO2 max is 15. This goal tickles me for a number of reasons but the biggest one is, that is still lower than the “poor” portion of the VO2 max scale. It isn’t even near hitting “poor” in fact, I’d have to hit 25, to be considered in the “poor” category. Isn’t that funny? It is so true what they say about being grateful for what you have because what you have even if it is not much, could be someone else’s wildest dream. 

I know one thing for sure. No matter what happens with the test this time around, I can honestly say that I have left it all on the field. I have done everything asked of me over the last seven months. If the test isn’t good, there is nothing left to do. I have thrown all I have at avoiding transplant. I have done all I can to make myself stronger. I have actively participated in my care. I have committed to my overall health and wellness. If I don’t improve, it is because something far out of my hands is wrong and I have to accept the next steps. See, just typing all this out has helped, guess writing really is a good tool for me and my mental health. I am not hand writing, however it is still working, guess the ol’ therapist and I will have to agree to disagree on that one.

As always, thanks for hanging out in my brain for a while. I know there is a lot of junk in here, but I hope sharing it with you all leads to a bit of understanding, a bit of reflection, and maybe even some hope? I will update you in a month (unless I get the urge before). In the meantime, cross your fingers. Sprinkle pixie dust, do a naked moon dance, or even pray. Hope that whatever is meant to be on this journey of mine comes to be. I hope to find peace with whatever it is. Thanks. 

Vaguely Nauseated and Kicking Ass

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Next week, on September 18th, I will have been vaguely nauseated and kicking ass for six months. Vaguely nauseated? Yes. Zepbound, the weight loss, heart failure, diabetes prevention, fatty liver resolving, ADHD improving, OCD quieting medication I am on, is not all sunshine and weight loss. I spend about 3-4 days after my shot each week vaguely nauseous. Most of the time it is just a nagging unease in my stomach, but especially on weeks my dose is increased, it can make me so nauseated I become sick. It is absolutely still worth it, did you see all those things that studies are finding it improves? And I have all those things! 

This week I went to my transplant team in Omaha and saw my doctor for the first time in  six months. My last appointment was with his PA, so he has not had the pleasure of my company since the Zepbound and all of my efforts started. I say this with absolutely no irony, homeboy was darn near giddy with my improvement. My BMI has gone down significantly and is now within acceptability range for transplant. If you remember back to the end of December last year, I said this “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…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.”

A more accurate representation of what that meant isn’t that I was stable and strong, it was that I was stable and too fat to get a heart that would be worth trading mine for.  It meant the heart I have currently is plenty strong if my choices of new hearts were going to be old and not particularly strong themselves. As much as blood type and antibodies come into play with transplant, so does size. If you are a 250 pound person you can only accept a heart within 10 pounds of your weight. If that weight is 250, the problem becomes anyone that is within that weight and not 6’2’ + is in the morbidly obese category themselves and not a great candidate to donate. If they are 6’2” or more the heart will likely be too big for my chest, even if it is a healthy heart. It is a whole Cinderella and the slipper situation. At the time I was relieved I was denied again, I truly want to keep this heart as long as I can, but I was also ticked off that I was not able to get the medication I needed to lose weight in time for it to affect the outcome of that particular transplant tribunal (everybody wants to win right, and nobody wants to be told they are chonky). 

Now, I have had that medication for 6 months. I have also been going to the gym three times a week for those 6 months, I have been watching every calorie going into my body for those 6 months, which means that I have lost the weight that was needed in order to be better qualified for transplant. To be ideal for transplant, I have another 50 pounds to go (this is not MY goal weight, if I get there great but I am not going to go nuts trying to achieve this weight, my goal is 20 more pounds). The thing is, I am feeling better. Apparently, people who eat right and exercise feel better? Seems fake, but okay. I have not cured my heart failure, but the blood test that indicates heart failure while not resolved is the lowest it has been in 5 years. Now my days don’t feel like punishment for living anymore – I was truly struggling before, and now while I am not the picture of health, I have a lot of my normal activity back. All of this to say I’ve unsheathed a double edged sword. 

In November I will have my VO2 Max test again. I have been below the cut off for transplant consideration in that test the last three times I have done it. An average person’s score is somewhere between 50-60. Mine is barely 13, and has been for some time. If I flunk again in November my doctor will now be able to put me forward for transplant and I will likely be approved. If that test doesn’t improve there will be no reason not to list me. 

Isn’t that good news?

It is. But it also isn’t…

I thought you wanted a new heart? I sure did.

And in ways I still do, but now that I understand the process more, I want that to be as far in the future as possible. My doctor said it in my last appointment, if I only want to be transplanted once in my life, then it would be great to wait as long as possible and be as healthy as possible in the meantime. If I am super honest I would love to ride into the sunset with the heart I came with but I also want to be around to see what kind of shenanigans my nephews get up to as adults, so it isn’t likely that this ticker is going out with the rest of me. I am not saying I should have stayed overweight to avoid transplant. I am saying, being overweight took it off the table. I am hoping that now I am healthier, I can put it near the back of the table, or over on the counter even. Anywhere not right in front of or on my plate. 

All of this comes down to that test I have in November. I don’t get to fail it again. I will pass or be put forward again. My goal is to get a 15, two points of buffer between me and that dreaded 13. My sky is the limit goal? 23. Ten glorious points away from the list. Proof that maybe I can exercise my way out of this after all or I can get nice and lean and otherwise healthy so my choices of hearts are better, and my recovery smoother. Until then, it is the gym for me. It is 1500 calories a day and 1800 on weekends. It is taking my meds and doing all I can to stay as healthy as I can. It is participating in my care so no one can say I didn’t try as hard as I could. Are you still with me? My cheerleaders have been my saving grace this whole time. Your support means so much to me, and motivates me to keep going. Thank you for being here. 

Until next time. 

Rehab Week 3

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As my third full week of cardiac rehab is coming to a close, I wanted to take a moment to reflect on my experience in that time. There are changes happening for sure, but not all of them are ones that I expected. When I started rehab, I expected to get stronger, increase my stamina, and maybe (hopefully) lose some weight. I didn’t expect my mental health to improve, my family to join me in my quest for better health, or if I am honest, to be very successful. I was hopeful when I started rehab but it felt similar to hoping there would be a pony under the Christmas tree. I might have really wanted it, but I doubted I would really get it. I am so glad to have been wrong. 

A big part of cardiac rehab, and a part that I was pretty sure I was going to stink at, was getting my diet under control. There are a few things where diet is concerned that I am excellent at, for example, I am really, really good at watching my sodium intake. It is a rare day that I go over my allotted 2000mg and if I do it isn’t by much. Edema fears my sodium tracking skills. What I am not (or wasn’t) good at, is tracking calories, fat, carbs, anything delicious. My thought has always been a bitter one, “If I have to give up salt, I am not giving up anything else.” and I would add unsalted butter, and eat sugary snacks with reckless abandon. I knew when I signed up for rehab that this attitude would have to change, if I was going to give this opportunity the best chance to make me feel better it couldn’t just be three days of exercise a week. Which is why, 25 days ago I started using an app called Lost It! I feel like they should start paying me because I sing its praises to anyone who will listen. I have religiously recorded every food that passes my lips, and I am happy to report that out of 25 days, my calories have been under budget every single day!

Reasons I love the Lose It! App:

  • Losing weight is gamified in a way I personally enjoy, for example each day I log all my meals, it contributes to my streak. I currently have a streak of 25 days and I will be really sad if I mess up my streak before day 100. 
  • You can buy a subscription for life. Instead of paying $50 bucks a year, you can pay $120 bucks and have the app for life. When you are making a lifestyle change, this option helps solidify that decision. I am not just doing this for the year I am subscribed, this is forever. Perhaps it is just the way my brain works but that distinction makes a difference. 
  • They have a TON of verified food options, be it fast food or products. Verification means the nutrition information that they have comes straight from the horse’s mouth. 
  • I am constantly earning little rewards or encouragement. It tells me when they see a healthy pattern such as, I have lower calories for the day when I eat eggs for breakfast. It also tells me how much weight I have lost as compared to household objects (I have lost a desk lamp or 5 pounds) and of course keeps track of my logging streak. 
  • My sister is using the same app and we can share our progress, recipes etc. 

Speaking of my sister, talk about something unexpected that has come from rehab! I am incredibly lucky and thankful to have my big sister join me both in eating better and adding exercise to her routine. It is awesome to go on this quest for wellness (I am sorry I really hate calling it a journey, a journey makes it sound like I am going on a nice trip. A quest, I think, leaves room for overcoming challenges and doing hard things.) together. We check-in, motivate and complain to each other. It has been nice to not feel like I am the only one going through this shift in the way I live my day to day.  It is not my place to talk about her business on the internet but it is pretty safe to say that most people could benefit from a shift to a healthier lifestyle. It is very motivating to know that we are in this together and that she wants to be healthy enough to hang out with me (and her kids I guess)  for a long time after I get a new heart. 

Another thing I didn’t expect but am greatly enjoying is a newfound sense of determination. I think sometimes when living a life that has a lot of limits, those limits start to encroach on parts of your life where you aren’t truly limited. I think there comes a point that you are so used to limits that you impose them in places that they don’t naturally exist. Feeling my edges so to speak has really given me confidence to push myself a bit harder in places that I hadn’t been. Instead of being a lump when I get home, I can spend 20 minutes cleaning the kitchen, or the evening doing laundry. My days don’t HAVE TO end at 3 p.m. I find myself waking up in the morning feeling energized and excited to get to rehab or my solo home workout. I think the best way to describe it is, it feels a little like I am sticking my tongue out and blowing a raspberry in the air, and saying “You can’t catch me!” to my own heart failure. I also think there isn’t a small part of me that is annoyed that I have thus far been unable to get the weight loss medication I have been prescribed due to shortages and misunderstandings. I feel a bit like Thanos saying “Fine, I’ll do it myself” to the system that is keeping me from receiving that particular weight loss jump start. 

Perhaps it is because of the new determination, paired with the feeling of safety that rehab offers that I feel that my efforts at the gym and in my diet have been successful. I am a person who regularly starts and stops this kind of quest. When the going gets tough, I get going…home. Go big or go home? Awesome, I’m headed home. I think I have reached the perfect blend of spite, safety, and determination to be successful. My workouts have quickly increased in length and effort over the last 3 weeks, I am going farther, longer, and faster each day. I feel stronger, physically and mentally. I am exhausted, but because of effort not because my heart is sluggish and my mood is poor. 

I am excited that I have 11 more weeks to keep getting stronger, and learning more about what I really can do. Hopefully in that time my muscles will figure out that this isn’t going to stop happening, and will calm down about how hard I am working them. In fact, the muscle aches are pretty much the only thing I can say that is negative about any of this. Does anyone have any hot tips about muscle recovery? My arms and legs are noodles for the whole night after a hard workout. Is that just what happens when you work out hard? Am I doing something wrong?  Do I just need a massage? Are my arms and legs secretly noodles and it is only apparent when I try to work out with them? Any help is appreciated. Thanks as always for cheering me on. You guys are awesome and it is really nice to hear from you all, and have your support. In addition to everything else, it is very impactful to know that I have such an awesome cheering section.

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. 

Chasing the Carrot

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I kind of lost it today. It has been a long, arduous month and I guess I only had exactly 31 days of patience in me. The beginning of the year is always a fun time for me (really any of your chronically ill friends, check on us, we are not okay). What is super fun about it is that, when insurance deductibles start over nothing is automatic. If you aren’t paying close attention there is a good chance things you’ve had on auto-pilot for the last 11 months have just completely broken. No warnings are given, if you are not proactive, you will not find out until you don’t have the medication you need, and trying to fix it from that point is like a clueless politician trying to help after a hurricane, paper towels are nice but my house is a fish tank.  

I have about six medications that have co-pay coupons, all of which have to be individually reapplied to their respective medications taking the co-pays down from $300-$600 (on $1200-$8000 meds) to $10, if you are thinking to yourself, that’s not right, you are correct and perhaps you’d like to vote for people in favor of Universal Healthcare. Somehow, each year no one knows how to get at least one of these coupons applied, this year it was two. In addition to that, one medication needed a prior authorization, and another a physician approval for refill. All told I have probably been on the phone with my pharmacy for three, maybe four hours in the last two weeks conservatively. 

Yesterday, I spent an hour on the phone with my insurance. All for a medication that I only knew was in danger of not being delivered because I looked, not because I was warned by anyone, or any system. The pharmacy has already sent my med packets without it. I have been working on this for TWO WEEKS and I missed the cutoff to have it included in my shipment. Now I am in danger of not having it suddenly for the first time in 5 years (I run out officially in 6 days). The things it says can happen if you stop taking it suddenly, are not great. Which may explain the franticness of my calls. After back and forth with the pharmacy, with my doctor, and with my insurance (for over an hour remember) today I was told this medication not only was denied, but not eligible for appeal or exception. I spent an hour talking to an insurance representative yesterday! She went through my policy with a fine tooth comb, and she told me, all I needed was the pre-authorization from my doctor. My doctor sends it, and within an hour it is denied. You can’t tell me that the representative didn’t know that this medication was going to be denied based on the new formulary my insurance has. I don’t blame her for my formulary, I don’t blame her for the fact this isn’t covered, that is above her pay grade. I am mad that there is no way she did not see after looking through all the things that we looked through yesterday the REASON this medication was suddenly being denied even though I had a current pre authorization on file and instead of telling me that it was denied, she said to ask for a new pre-authorization.   

This medication has been keeping my head from exploding off my body for the last 5 years, but I guess now I get to either have completely debilitating migraines again (as opposed to the only mostly debilitating ones I have now) or try a different form of the medication that my doctor already was pretty sure would not work for what I needed it to do. I am SO limited on the kinds of medications I can take, and this is just devastating. I hate that people who aren’t doctors can decide what I am allowed to have. I can’t even get it without the insurance because it is too expensive. I have a $10 co-pay card but those only work if the medication goes through insurance first. If I wanted to pay for this medication out of pocket it would be somewhere in the neighborhood of $8000 a month. Yes really. Again, the system is super broken and perhaps we could vote in ways that make this less easy for the medical complex to do? 

That is just one medication. I still have one medication that had its coupon applied and disaster averted in time for my monthly shipment. Yay! But, I know not to get too excited because the likelihood that it will apply automatically next month without me calling and having it applied manually is about 1000 to 1. The final medication has been refilled by my doctor but the pharmacy seems to think that it was canceled by him. I. GIVE. UP.  I am going to give them a week to figure this out, I am not in danger of not having it until my March shipment. I am hoping that somehow this problem works itself out but I foresee another half hour on the phone getting it fixed. It would be easy to blame the pharmacy, but this has been an issue at almost every pharmacy I have used. 

In addition to all of this, I have been prescribed Wegovy to help me lose weight in preparation for transplant. Do you think the pharmacy can get its hands on any? Do you think my insurance will cover any other type for any reason other than being diabetic? Sure won’t. Am I a literal tenth of a point from being diabetic and kind of hoping my pancreas craps out so I have a chance at getting this medication so I can get a heart? Disgustingly, yes. That is what it has come to, it would be beneficial to me to be diabetic. Insurance does not want to help us prevent things, it wants to help us march ever closer to the grave and play chicken with our plot. 

In the midst of all of this I am feeling pretty gross. Truly not well, mentally, nor physically. I am not super certain why but I have a feeling heart failure is a big part of it. On top of that it feels like I am doing everything I can to put off transplant, get the medication and services I need, literally fight people for what I need to live and every time I get close, the carrot is moved just a little further away. Guys, I am starting to think you can’t get the carrot. It’s really hard to stay motivated to “get better” when it is already so hard. Don’t admit that though, you don’t want anyone to think you don’t WANT a transplant or don’t WANT to get better. Don’t let anyone think you might not be compliant. I want it more than anything, I spend all my time TRYING to comply, but the bureaucracy is crushing, the roadblocks are everywhere, and I just want the damn carrot already. 

Still stable, still strong. Not yet.

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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.

The Beginning

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People often tell me that I need to write a book. Maybe one day when all of this is “over” I can think about that. Right now I have enough seemingly insurmountable tasks ahead of me, I don’t need to add any more, plus, where would I even start? 

I may never write a book, but soon, in a city a few hundred miles away there will sit a group of people I barely know deciding what happens next in my story. I truly believe whatever they decide will be the right thing for me, because since the very start that has been the truth. Somehow even against all the odds, from the very beginning things have just always kind of worked out. My bread has always managed to land jelly side up and leaning heavily on the five-second rule, I have always been able to dust off and move on. 

I guess that if I were to write a book, the beginning is where I would start. I think it is hard for anyone to know with the memories of times before they can personally remember anything, what is true, and what is family lore. Like most things, I would guess the truth is somewhere in the middle of the facts and the fiction. The story I am about to tell is the truth as I know it. I will do my best to tell it free from as much hyperbole as I can manage though you may find parts of it hard to believe, I know there are times I still do. 

June 23, 1982, was a truly beautiful day in Dodge City, Kansas. I didn’t arrive until late morning and even then didn’t make it outside, but thanks to my friend the internet I can see the high temperatures that day barely broke 80. What a lovely reprieve from the scorching late June heat in western Kansas. My mom couldn’t have planned it better, and for the record, my arrival was planned. I didn’t know that until today. I knew I arrived via c-section like my sisters but I didn’t know if the day was planned or would be whenever I started knocking. I have always liked my birthday, the date in particular, not just the fact I get presents. June 23, 1982, 6/23/82, do you have any idea how many times I have had to confirm my date of birth? So many interactions in a hospital require a person, to confirm their date of birth, 6/23/82 rolls off the tongue, and if you’re OCD like me you like that two multiplied by three is six, and eight minus two is six. Brains are weird. What was I talking about? Oh yeah, I was born, well extracted by appointment, the morning of June 23, 1982, at St. Catherine Hospital in Dodge City, Kansas. 

It was obvious pretty quickly that unless Papa Smurf was real and my biological father, there was something not quite right happening with me and my cerulean skin. I don’t fault anyone for the things that transpired over the next 24 hours. It was 1982, we were in a tiny hospital with fewer than 100 beds in southwestern Kansas, and only about 1,100 babies are born with my specific heart disease each year. In such a rural area it is unlikely that they’d ever seen a baby with TGA before. Even if they had, it had only been in the last 10-15 years that doctors had been routinely able to operate on these tiny hearts and increase their life expectancy. So no, I don’t blame anyone for the events that took place over the next 24 hours, because I don’t think my life would be different if things that day had moved any faster, though I do know things could have been devastating if they’d moved slower. 

Obviously, the cobalt cast of my skin was concerning to the doctors. They may not have known the why, but what was pretty obvious, this baby was not getting enough oxygen. My mom was told that some time in an oxygen-rich isolette with some warming lamps should do the trick. It did not, dear reader, do the trick. I’ve spoken to my mom recently about how things went that first day, and it is hard for her to remember all the details. As it stands I was an infant, she was on drugs (prescribed, from a 1980s c-section), and my sisters were only eight and five years old, we don’t have the world’s most reliable witnesses. It went something like this. My mom would come into the nursery to see me, I was quiet, and still, I didn’t open my eyes, and was not “pinking up” as had been promised with the introduction of oxygen. This went on until the next morning, that was when Dr. J made his rounds. He was right out of med school, I happen to know he had only started practicing in 1981, he was much less senior than the doctor who had suggested I needed oxygen and warming lamps. He took one listen to me and knew that there was no amount of heat lamps and oxygen that was going to fix what needed fixing. 

The right thing and the popular thing aren’t always the same as they say, and Dr. J’s suggestion that I needed to be life-flighted to Wichita immediately in order to survive was not a popular call. The more senior doctor had already made the call about my condition, I was just not responding as well as they had hoped. I worry dear reader, that given his way, that doctor would have “wait and see-ed” me right out of this earthly plane. Perhaps that is why I have never enjoyed a wait-and-see approach. Dr. J fought for what he knew was right, he explained it to my mom and my grandparents, and it was decided. My mother had done the first “next right thing” of my life.  I would be flown to Wichita as soon as the life-flight could be arranged. I would “meet” my sisters through a glass window quickly before being shuttled off, and my mother would sign herself out of the hospital AMA so my grandparents could drive her the 3 hours to Wichita to be with me. 

I wrote Dr. J ten years ago, to thank him for what he did for me. What follows is a little excerpt from that letter and his response. It will explain a bit of what happened next. 

“Dear Rev. J, 

My name is Monica Wells, I am 31 years old and your intervention is why I am able to write you today. You don’t know me, in fact, we only met very briefly when I was only a few hours old, but I owe you a debt of gratitude.

On June 23rd, 1982, I was born in Dodge City, Kansas. A blue baby, my mother’s doctor assured her that after a while under a warming lamp and some oxygen, I’d pink right up. It is my understanding that you are the one who examined me and determined this not to be the case. You were the one who made the suggestion/decision that I should be flown by jet to Wichita immediately if I was to survive. You were right. I was diagnosed with transposition of the great arteries upon my arrival in Wichita. My heart stopped for the first time less than 24 hours later and I was having the first of several open heart surgeries within 72 hours of my birth. I don’t know how much if any of this information ever made its way back to Dodge City and to you, but you saved my life. 

I hope I have found the right person, and I wonder if you even remember this. I would understand if you have no recollection as  31 years have passed, but my mother remembers it like it was yesterday and the story has always been that you were the one that saved her baby, the one who saved me first.”

His reply. 

“Hi, Monica.

Oh, my!  What a blessing your email is for me!  I do remember you, but I never heard anything more after you were airlifted out. I have wondered of you often, your bright red hair and will to live were impossible to forget. 

…

Thank you for this gift to me.  Most of what we do is like planting a seed…it takes years before that seed bears fruit.  And, rarely do we see or hear of that fruit.  Hearing from you is a privileged glimpse into the fruit of our meeting so many years ago.

All blessings to you and yours, Monica.

Fr. J”

Dr. J now Fr. J left medicine and joined the seminary 10 years after we first met in 1992 and has been a reverend ever since. He and his wife both minister at a church in Texas. He put his brand new career on the line to second-guess those above him, and it saved my life. None of us know or remember the name of the doctor who made the wrong call, we only remember the name of the doctor who made the right call. It has never been about holding a grudge but always about holding gratitude. 

Within 72 hours of arriving in Wichita I had my first corrective surgery, this one to allow me to oxygenate the way my body had cleverly been oxygenating already, by holding open the hole between the two upper chambers of my heart. You see, I even managed to get lucky in that way, by having the right combination of heart defects to temporarily allow me to survive while everyone else figured out a plan. Jelly side up. 

It is hard to have faith in the medical complex. The system is convoluted and seems to be set up to fail. For me, I  just have to trust my gut and do the “next right thing”. Try the new med, or maybe refuse it. Stay with the same team, or be brave enough to say goodbye. Since that first big “next right thing” I have trusted my mother’s gut and learned to trust my own. Presenting my case again is “the next right thing” and if this team, whom I picked because they were also “the next right thing” says it still isn’t time, then I wait, because there is one thing I know for sure, you cannot make “the next right thing” happen. The next right thing just is, and so it will be.

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.

Participating In My Care

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“You have to participate in your own care.” 

For years I have heard this phrase, it comes up from time to time in patient groups I am in, around  the importance of self advocacy. It comes up in articles about living with chronic health conditions and seeking care. Doctors and nurses will use it when you are in the big house (hospital), or about to be sprung from it to remind you of your responsibility in the healing process. It is a catchphrase, and like so many catchphrases, once you’ve heard it a million times it starts to lose its meaning. 

If you are reading this you likely know that I recently underwent an evaluation for heart transplant. If you didn’t know that, perhaps you should go back and read a few prior entries to give this one some context. After the billion and two tests, it was decided I was not quite ready for a transplant, and that perhaps with a bit more participation in my own care on my part we could keep it that way. I was skeptical but willing to try. 

Here’s the thing, I have always kind of thought of participating in my own care as things like; taking my medications as directed, or going to my appointments when I am supposed to,or maybe even keeping up with my preventative care, vaccinations, things like that. I did those things. I have been a model patient for years now, (we won’t talk about the years before that they don’t count, I was young dumb and mentally unwell) I truly felt like there was nothing more I could be doing. The suggestion that there WAS more that I could be doing would often lead to a full on meltdown. The guilt would quickly transform into a shame spiral that I could not easily come out of, it was best to assume I was doing the best I could and leaving it at that. No one wanted to set me off, and I was darn good at keeping it that way. And look it wasn’t like I didn’t believe I was trying my best, it was just that I am a MASTER at justifying just about anything to myself and others. Take-out three nights a week? I’m too tired to cook, sad face. No exercise? It scares me, and I don’t want to be alone if something bad happens. You name it, I could channel my inner CJ Craig and spin it. (Let me take a moment here to say if you don’t know who CJ Craig is, you owe it to yourself and your country to watch The West Wing.) 

I may have been taking my meds, and making appointments but was I really participating in my care? Yes and no. There have been very real mental hurdles in my way, roadblocks that I didn’t even see until I had these recent test results in my hands and realized that while I did sometimes (often) not feel well, I could really catastrophize that and build it up to the point where I convinced myself that my safety and really my life was on the line if I did too much. Now rewind to three months ago and I have these test results in my hands and yeah, some of them are not good, and none of them are normal but they are stable. None of these results were super dangerous and the conclusion was that while no, I am not a picture of health because of elements beyond my control, I could be healthier if I took control of the things that were within my power. Gut. Punch. 

I had really been hanging my hat on one sentence said to me perhaps mistakenly or a bit too flippantly over a year ago. My EP and CHD doctor said “You can’t diet and exercise your way out of this (chronic heart failure).” I took that as, not only can you not, but you shouldn’t try, and hey why don’t you eat whatever the hell you want whenever you want it, because you’re screwed anyway. 

During my evaluation appointments I met with a nutritionist who helped me see that I was doing a lot of the right things, but there were a few things I could be doing better. Tiny little tweaks that would make a big difference. She also showed me that my perception of what my goal should be was WAY off. I had been thinking I needed to lose like 50-60 pounds and fast. She showed me that really 15 would be ideal and if I did that in a year she would be impressed. Then I had a cardiothoracic surgeon tell me much the same, that it isn’t about speed at all, it is about consistency and that they just want to see effort and forward movement. They wanted me to participate in my care. 🤯

When I came home from that appointment as well as my follow up a few weeks later I had a lot to think about. I had really painted myself into a corner of belief that I was fundamentally, irrevocably, unhealthy. I sold myself the idea that the only way that I was going to feel any better, ever again was if I had a new heart, and here I was not getting one, and being told that there was a chance that if I reconditioned myself, ate better, did some cardio, I might start to feel better. No one was making any promises that this was the thing that was going to “fix” me, in fact I was told that I would likely still feel crummy from time to time. I just needed to try not to stay in that crummy place. Needless to say I had a lot to digest and sort out on my therapist’s couch. I had been psyching myself out, now I needed to psych myself up. 

As of May 29th I joined the YMCA and have gone all but one day since (I listened to my body and screaming muscles about day three). Sometimes I even take a walk OUTSIDE which if you know me, you know is one of my least favorite places to be. I have worked up to a solid 20-30 minutes of cardio and do resistance training at home. I am eating better than I have in a long time, and logging all my meals, and tracking my calories. You guys, I am eating salads regularly. I am doing my best to participate in my care. I wake up every day and the first thing I do is my cardio. And guys…I am starting to feel better. Little things, here and there. Less winded coming up the stairs, a little lighter on the scale, more energy in general. I had given up on myself there for a while and I didn’t even realize it. I see it now and I am here to participate.