Tag: health

Tightrope. (You don’t look sick…)

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Every day, I walk an invisible tightrope. Step by step, I inch forward, steadying myself, fully aware of the drop below. Chin up. Smile. Do not let the audience see the tremor in my hands or the heaviness in my bones. They expect composure, strength, even grace in this precarious balancing act.

So I play my part. One foot, then the other. Smile for the crowd. Hide the weariness. The rope wobbles, but the performance must remain steady. The crowd applauds, but they never see the fatigue, the fear, the longing for solid ground.

Like a Flying Wallenda, I never auditioned for this life; I was born into it. With no other choice, I have mastered the theater of survival, the art of balance, and the silence of exhaustion hidden behind a smile. The rope stretches on, longer and farther than I ever imagined, and though there are days I ache to step down, still I walk. Because the show, it seems, must go on.

The show is my daily life. Over the years, I have learned that nobody likes a sad sack, and people can only tolerate one for so long. But in truth, I am not sad. That part is not an act. Sure, there are days when I do not feel well and must paste on a smile, but even then, I carry joy. I love the life I have built within the confines of my circumstances, and most days, even the hard ones, I am happy.

Still, the act causes confusion. Because I do not “look sick,” “act sick,” or often show the cracks in my armor, people struggle to reconcile the visible with the invisible. Now that I have added workouts as part of my healthcare, it baffles some even more, and I understand why. It is hard to grasp that while I can lift weights or walk a mile, I cannot work an eight-hour day. My tank does not hold that much fuel. Heart failure has diminished my capacity, so I must ration what I have. Doctors’ orders.

Every morning, I wake up and prioritize. At the very top, above all else, is my heart. Keeping it as strong as it can be is not a luxury, it’s an imperative. It is the rope itself. Without it, there is no performance. And I am not ready to say I want a new rope, so it must come first. Because of that I’ve had to drop other things, like 2.5 hours of my work day. I just don’t have the fuel to do it all, and trying makes me so sick that I can’t do any of it. 

I cannot help what others understand or do not. I refuse to wallow in self-pity or bend myself into the narrow mold of what a “sick person” should look like or act like. Even doctors have been baffled, studying test results that scream decline, then looking at me, upright and smiling, and wondering how someone who on paper must feel miserable is not a cranky, bitter mess. And if I am honest, there are some days that I am but that is nobody’s business but mine (and my therapists). I get to present myself to the world in whatever way I choose.  I choose a life of joy, fun, determination, and optimism, even if the world around me can’t make sense of it. So, one foot, then the other, I continue forward.

This is my act. This is my balance. This is my rope. And though the crowd may never fully understand, the show is not about them. It is about me, still walking, still smiling, still here.

I cannot help it if I am cute even when I am very, very sick.

I can’t help it if I am cute even when I am very, very sick.

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. 

The Week My Case Was (Supposed To Be) Presented a Second Time

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One week before I got the call that my case for heart transplant would be presented for the second time, I said goodbye to my beloved cat. The end came quickly for us. He was old, it is true, but he was also a complete mad man. That was until he woke up from a nap one afternoon and it seemed like he couldn’t use his back legs. Things only got worse from there. It seemed my sweet boy had a stroke.  I will spare you the details of the decline of my fabulous feline. He deserves to be remembered as the majestic beast he was, but it was easily the most heartbreaking week of my life. I understand now what they mean when they say “soul” pets. Gus was certainly mine. I have loved all of my pets, but there was just more with Gus. He was my friend and confidant. He was my nurse and companion through the biggest changes I have ever gone through mentally and physically. I have never met a cat with so much personality, and while we didn’t speak the same language, he always seemed to know when I needed a cuddle or laugh. I can’t see the future, but knowing what I know now, I think maybe he could at least feel it. You see, one of the biggest things I worried about with the possibility of transplant looming was my buddy Gussy. Gus was extremely bonded to me, and exclusively me. He tolerated other adults who would feed him but he was truly only nice to me. I worried about the amount of time that I would be away from him for transplant and recovery and more than that I worried about how to manage after transplant when it is recommended to not be near cats. I believe he took that worry away from me, and knew this next part of my journey I had to go alone. I will miss my Gussy, my Wussy, my baby, my wayby, Fatness Neverlean, Bubs, Bubbers, Chubs McGee, Auggie, Chonk-a-donk, Triple G, and all the other nonsense names I called him daily. 

The Monday before my heart transplant was presented for the second time I woke up with a blue tongue. If you do a cursory Google search for “blue tongue waking”, you will find that the internet believes that you may be suffering from a congenital heart defect (check), heart failure (check), asthma (check), perhaps acid reflux (also check), or the ingestion of a blue food dye. I could not remember eating anything blue, as I do my best to follow the rules and the third rule of CHD club is no blue food. (The first rule is don’t die, the second rule is no faking heart issues for any reason, even if you hate your PE class). Anyway, I didn’t eat any blue food, so mild panic set in. I took a photo and sent it to the team, not my medical team mind you, my home team, my family, it was 7 a.m. someone had to be awake. My sister must have done the same quick Google I did and concluded I had a congenital heart defect. Shocking. What is a girl to do but check her O2 (it was fine), and then try brushing her teeth. Sure enough, the blue started to come off. I swear I didn’t eat anything blue…but I did have Christmas Nerds, red and green Christmas Nerds, the night before and while they aren’t blue and thus not technically against the rules, it’s the only thing that I can think of that would have caused it. All this, before 8 a.m. on the Monday before my case was presented for a second time. 

On the Tuesday before my heart transplant case was presented for the second time, I said “see you later” to the therapist I have been working with for seven years. Like Birdie said in Hope Floats, “Beginnings are scary, endings are usually sad, but it’s the middle that counts the most. Try to remember that when you find yourself at a new beginning. Just give hope a chance to float up.”  Endings are sad, but notice she didn’t say “bad”. Nothing bad here. For the last seven years I have had the best therapist I likely will ever experience. She was who I needed, when I needed her. I showed up in her office broken and without a toolbox. I am leaving knowing who I am, how I roll, and with a toolbox brimming with ways to not only help myself but effectively help others without sacrificing myself (they’re called boundaries have you heard of them?).  I have grown so much as a person it is time for me to test the wings she helped me build. I hear what you’re thinking…now? Yes. Simple as that. It is time. Sometimes you find yourself at a fork in the road in the middle of a journey and you get to choose a new way forward. Our paths don’t go in the same direction anymore, but how cool is it to be able to look back and see just how far that path has taken you. You know me, you know I am like an adorable fungus you cannot get rid of, a see you later is not a good-bye. You’ve seen the photos of me with my childhood cardiologist, even professionals keep me around, just like you they want to see what comes next. I just as much cannot wait to see what is next for her, she has so many new things happening in her life and practice, she changed my life and I can’t wait to see how she changes others. 

Early in the morning, on the Wednesday before my heart transplant case was presented for the second time, I took a small box containing a tiger tipped vial to my local hospital lab. A sweet woman named Loli drew my blood so it could be sent to Nebraska for antibody testing. This is an important part of the heart transplant process, and a vital piece of matching me with a heart in the future. Loli was so sweet and must have been able to tell that I was nervous about this precious vial arriving in time for Friday. She kept telling me how she did this all the time and how they would process the blood and get it on it’s way. She asked if I had a transplant, and I explained I was hopefully getting one. “Kidney?” she asked. I get that a lot, I think it must be more common for a person my age to need a kidney than a heart. I told her it was a heart and that this was my second try. She told me that she knew she probably shouldn’t say this, but it is Christmas time and miracles happen at Christmas. She will pray for me to be listed. I thanked her, and she told me again that she would make sure that this got sent out quickly. Through this whole process I keep having encounters like this one, my family too. I don’t know what I believe about what happens when we die, but I will tell you this, I am shown almost every day that there are people looking out for me on the other side. 

Later that same morning (the day I am writing this), I got a message from my clinic letting me know that my case won’t be presented this week. Unfortunately, they wouldn’t have my antibody testing back in time to discuss my case. I was crushed. I can handle waiting for a heart, and the unknown of when it will happen. I can handle them saying it isn’t time again, they will know when it is time. What is killing me is being told I am going to be put up for consideration again, and being delayed time and again. They knew they would need this test. They knew how long it takes to get results. They knew where I lived. I was just there doing other tests for this presentation, and they didn’t do it then. They didn’t use overnight mail, they didn’t ask me to come back to do the test there. They just told me they were presenting me, and they were sending a kit to collect this blood. I called on Monday to express concern I didn’t have the kit yet and I was told that it would not be a problem, I could be presented without it and to let them know if I didn’t have it by Wednesday. I received it Tuesday night and went immediately to have it drawn in the morning. I triple checked that it would be sent that morning. To have done what they asked and then be told it wasn’t enough within hours of each other was soul crushing. It is my goal to do everything I am asked by my team. If they had told me I needed to come there for them to draw one vial of blood, I would have. We are talking about the literal rest of my life, we aren’t talking about an annual physical, or an ingrown toenail, we are talking about heart transplant, this is something you drop everything for. I understand WHY they need this test first, but I can understand and still be disappointed in the way things went. Trust can be shaken but not broken, so right now, my trust is a little shaken, but not broken. 

Now I don’t know when I will actually be presented. Next week being so close to Christmas seems unlikely, the next being the week of Christmas seems less likely. I have felt hopeful the last week, that this would be the time, and I would be listed. Things seemed to be working out. I hope they still will. Right now, I am just sad and angry. I am tired of being tired, and I am tired of waiting to know what comes next. 

You should know I am okay. I really am. I am nothing if not resilient, and my mom has come to be with me while I go through all the emotions. She was coming to be with me when I found out if I was listed and she came early when I was crushed to find out everything would be delayed. I am lucky that either way, when I need my people, they show up. This will get sorted out, and sometimes even the best people in the medical complex forget that there are real people and big emotions behind the test results. 

I share all this because this process is not linear, and because of what is on the line it is incredibly emotional. I share this because you are someone close to me and I want you to know what is on my mind when I seem like I am a little less cheery than usual. It is important to share this because, you might be going through something like this, you might know someone (me) who is or will be, it is important to know that it isn’t a plot against you or me when things don’t flow neatly from point A to B. If you are one of my people thank you for your support and love through this, I continue to be amazed and humbled by the amount of kindness and love I have been shown. If you are on your own journey, I wish you health and ease as you put one foot in front of the other.