Listen to Your Body

For as long as I can remember, people have told me to listen to my body. It was practically the soundtrack of my childhood. I heard it from nurses, from my mother, and most recently from my cardiologist, who said it with the same energy as someone offering ancient, mystical wisdom. Going to a high elevation? “Listen to your body.”

It sounds gentle and intuitive. It sounds like something you’d hear during yoga while someone rings a tiny bell. But for me, that phrase has never meant serenity. Listening to my body has always meant one thing: prepare for impact.

My body has never been a calm inner compass. It has been a 24-hour breaking news alert system. “This just in, you might be dying…” Numbers. Readings. Symptoms. Side effects. Every twinge a possible emergency. Every flutter a potential disaster film in the making. .

“Is this a headache or a stroke?”
“Chest pain or arthritis?”
“Am I tired or am I fatigued?”

And my personal favorite: “Do I have a blood clot?” A diagnosis I have never had in my entire life, but a theory my brain presents with the enthusiasm of a kid showing you their newest treasure.

After years of this, listening stopped meaning awareness. It became surveillance. It was less “inner peace” and more “airport security.” And thanks to the alphabet soup of C-PTSD, OCD, ADHD, and other neurological party tricks, that vigilance was cranked up to maximum volume.

To be fair, I was born with a complex heart condition, so paying attention mattered. Small shifts really did mean something. But somewhere along the way, I began to believe my literal survival depended on catching every flicker of sensation before it turned into catastrophe. My body became a project, and I became a project manager who never got a day off.

Eventually, something rewired itself. I stopped recognizing my body as a place where emotions lived. Sensations were never just sensations. They meant illness or medication changes or tests or occasionally “Hey, for real though, you might be dying.” A racing heart was not fear. Tightness in my chest was not sadness. My body wasn’t allowed to feel; it was only allowed to signal.

Even professionals played into this without meaning to. A dull ache? More tests. A weird flutter? More medication. A moment of discomfort? Let’s throw in a scan for fun. No one, including me, considered that my body might also be speaking in the language of emotion.

By the time panic attacks appeared, I’d spent years responding to every sensation as if it belonged to my heart. So when the symptoms started, the doctors and I followed the same script we always had; tests, scans, monitoring. It wasn’t until we ran out of physical explanations that we finally realized: my body wasn’t warning me about my heart. It was trying to tell me I had feelings I’d never dealt with, and my mind was tired of waiting it’s turn.

Now, when I try to feel my feelings, I often get static. What I hear is the echo of a system that kept me alive but no longer matches the life I’m trying to live. Any detachment I experience is not apathy. It is survival being a little overzealous and not knowing it can clock out now.

Even the most basic emotions can hit the old alarms. I rarely assume I am having a feeling. I assume I am having an event. The smallest beep from a microwave or phone still makes my brain behave like it is back in the hospital, ready for a plot twist. It is very Lost in Space. My mind goes full B9 yelling, “Danger, Will Robinson,” and my system responds as trained: shut it down, stay calm, stay alive.

These days, I am trying to listen differently. I am learning to notice the quieter signals: the warmth of a blanket, the gentle rhythm of breathing, the moment of contentment when a room feels safe. I am teaching my body that not every sensation is a threat and not every feeling requires medical intervention. Some things can simply exist without becoming a diagnostic mystery.

People love to tell those of us with lifelong medical conditions to be strong. But strength does not always look like vigilance. Sometimes strength looks like unclenching your jaw, and relaxing your shoulders. Sometimes it looks like rest. Sometimes it is trusting that your body can communicate without sending up a flare. A whisper can be just as wise as a wail.

I am not trying to unlearn survival. Survival has been my longest relationship. I am simply trying to expand it, to let it include moments of ease and belonging and maybe the occasional emotion without the immediate assumption that the end is near.

So when something rises in my chest now, I pause. I breathe. Take a quick look at my vitals, just to satisfy the tiny intern who lives in my brain. (I am still me guys.) But when everything comes back normal, I remind myself that a feeling can simply be a feeling. A heartbeat can simply be a heartbeat. And sometimes the noises I once treated as danger are nothing more than the ordinary soundtrack of being alive.

Maybe this is the real meaning of listening to my body. Not scanning for illness, but noticing the quiet whisper of an emotion before I mistake it for something medical. Not bracing for danger, but letting myself recognize sadness, or joy, or fear, or grief as themselves. I spent most of my life believing feelings were symptoms. Now I am learning how to tell the difference, and even more than that, how to let emotional feelings exist without rushing to diagnose them. It turns out my body has been trying to speak in many languages, and I am finally learning to understand more than one.

OCD. My Heart. And Me.

My heart races for two reasons: one, because it can’t always keep rhythm (damn tachycardia), and two, because my mind insists it’s about to stop. I’m open about my heart condition and my mental health, but I rarely talk about how the two gang up on me.

Today in therapy, I spent the usual 15–20 minutes circling the topic I knew I needed to address. Maybe one day I’ll get straight to the point, but not today. It’s hard to admit when OCD is in the driver’s seat. It feels like failure, like I’ve lost control. But as a previous therapist said, “What you resist persists.” So, I started talking.

First, I recapped my recent cardiac appointment and its not-so-great results. Then, I proudly announced my renewed gym plan, Monday, Wednesday, Friday mornings. Perfect. Predictable. Manageable.

Then I had to confess, last Friday I didn’t feel well, so I skipped. I promised myself I’d make it up Saturday or Sunday. Except I couldn’t. I go Monday, Wednesday, Friday not Saturday, not Sunday. If I went off-script, surely I’d injure myself, exhaust myself, maybe even ruin everything. And then, to top it off, the gym was closed this Monday for the holiday. How could I possibly go Wednesday if I hadn’t gone Monday? Clearly, the whole week was ruined. Not only is my heart failing but I am too. My heart was doomed. Why bother?

I know none of this is rational. These thoughts aren’t truly mine, they’re symptoms. Intrusive thoughts brought to you by OCD.

OCD is a master of manufacturing catastrophes out of nothing. In therapy, I can roll my eyes at the absurdity, but at home it’s harder. I can label the thoughts as silly, but acting against them is another story. Fear, even unreasonable fear, has teeth.

So my therapist and I played “What if.”

“What if you planned to go Thursday instead of Wednesday?”

Then I’d have to go Friday too, which is impossible, two days in a row? I’ll croak!

“What if you could go two days in a row?”

Then I’d be exhausted all weekend.

“What if you weren’t?”

Then it would hit me Monday and ruin the week.

Round and round we went, until finally:

“What if everything turned out okay?”

“What if you worked out three days a week…any three?”

“What if you allowed flexibility without neglect?”

That one hit home. I felt lighter. I could feel my posture change. I am stronger than OCD, I reminded myself. Then my therapist asked, “So, how does Saturday sound now?”

Stubborn as ever, I told him the truth: “I still don’t like it… but I think I could try.”

And I want to try. Because OCD doesn’t just push me to color-code my sock drawer, it can slide into dangerous territory, like keeping me from taking care of my heart. And that’s when I have to remind my brain who’s boss.

So this week I have homework, go to the gym on a day that isn’t Monday, Wednesday, or Friday…just once in the next two weeks. Doesn’t matter if it’s in place of a regular day or in addition, I just have to do it. While exposure therapy is probably the most effective treatment (in my experience) for OCD, that doesn’t make it easy. Still, I believe in doing my homework. So I will do the only thing I ask my students to do…try. You don’t have to be right, you don’t have to be perfect, just try. Here goes nothing.

Vaguely Nauseated and Kicking Ass

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. 

Still stable, still strong. Not yet.

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

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.

Getting My Sh!t Together.

Waiting sucks. Waiting with very little information is even worse. A month ago when I had my appointment and was told that it was time to start moving forward with transplant preparations, I delayed that appointment. I could have avoided the wait,  I was offered an appointment only two weeks later. Obviously if I didn’t want to wait I could have taken that appointment and what is unknown now would be known already. The problem is I knew I wouldn’t be ready. I needed some time to feel all the feelings I was having and let them all have their shot to completely consume me, and over the last month they really have. I took the time I needed to process, to cope, and to work through all the feelings in a…get this…healthy way. PTSD is a helluva thing, part bodyguard, part magician, if you aren’t at least a little prepared for the trigger, it will throw up the defenses and let nothing and no one through at best, or abracadabra your consciousness completely out of there at worst.  I needed to get my shit together so that when the time came to walk into that room I had a shot in hell of remembering a word that came out of the doctor’s mouth.

Now here I am, feelings mostly processed (there are always going to be things that pop up and unexpected triggers here and there) ready to get rolling and I have another three weeks to wait before the most burning of my questions can be answered. As much as I have been working on feeling my feelings and coping with triggers I have been working on staying present and trying my best not to worry about the future (yeah right, do we understand what is looming out there?) and letting go of the need to control. I know I can’t control what happens next, how fast things move, or what kind of news I get. I know that. What I can do is take control of the things that are in my power, and so I am getting my shit together. 

A few weeks ago I asked my sisters for help. There is no way I could ever express how thankful I am for the way these two have always supported me through all my medical adventures and misadventures. They are my twin protectors, enough brain and brawn between them that there isn’t a need to assign either attribute to just one of them. They use both to help me make sure I am getting the best care, hearing my options, understanding them, and supporting me while they let me make the best choice I can. I know this process would swallow me up if I had to do it without either of them. 

As we chatted about the things to come and my worries, it was obvious that I was going to feel better the more that was finished, off my plate and I could say I didn’t have to worry about anymore. Being the furthest away and the biggest nerd my middle sister took on the job of what we like to call my personal CFO. She has built about a dozen spreadsheets of information that we will need going forward, making it easier every time I need them. Together we have figured out a lot of the what-if’s of my finances, filing for disability, and future medical coverage options. She has found resources for everything, and given me the option to fill in documents as I have the time and mental capacity to do so. Over the last month, we have completed almost every form I will need completed in the short term and it feels amazing. My older sister who lives closer, will be boots on the ground, ever the analytical thinker, she is the question asker, she thinks of things I never would have and is good at hearing and understanding answers even when I have peaced out of the conversation for mental preservation.

My mom historically has been the brain, the brawn and the comfort, through my medical procedures. Now that my sisters are involved I hope she feels the same relief that I do, and can enjoy being just the comfort for a while. Recently, a couple weeks after my sisters and I talked my mom came up and helped me get my house in order. Literally. I do a fair job of keeping my living environment clean and tidy, but there are larger cleaning projects that fall by the wayside due to my physical limitations. Having her come and help get those things done has helped me so much. It is so much easier to keep a home clean when you aren’t bummed out about the things you keep avoiding because you can’t do them. Talk about comfort, not only was our time together a recharge, it feels great to clean up a room and have it really feel clean. 

As this all unfolds all of our powers will combine and there is nothing that we won’t be able to get through. We have been training for this moment my whole life. It is go time. I may not know what this appointment or the next few years will bring, but I am organized and ready. For what feels like the first time in my life, I have my shit together.

What I Mean When I Say I’m Fine.

What I mean when I say I’m fine. 

When I say I am fine, I mean that right now I am handling everything on my plate even if some of it feels like it is slipping to the edges. 

When I say I am fine, I mean that when I woke up this morning I was able to win the tug-of-war between staying in bed and starting my day. 

When I say I am fine, I mean that I can ignore the pain in my chest, and the way my head swims when I stand.  

When I say I am fine, I mean that I am taking care of myself, and protecting my energy, not that I don’t want you to bother me. 

When I say I am fine, I mean that I am doing the work, using my tools and keeping my mind right. 

When I say I am fine, I mean that I don’t care to talk about any of it right now, I have found my footing and I worry that talking about it will send me off balance again. 

When I say I am fine, I mean that I can’t stand to think about causing anyone to worry, so please believe me when I tell you that – I am fine. 

I am fine. I am okay. I am safe. (Is this a mantra I repeat to myself on the regular? Yes.) Depending on the day I am even doing pretty well considering. I feel like I am gaining a bit of stamina back for work, and it is becoming easier to make it through the week without feeling like my tank is completely empty. I have been slowly adjusting my mindset to accept my new baseline. A friend of mine who is a few years post transplant gave me that word, baseline. They expressed how much they hated the phrase “new normal” and I really feel that too. Nothing about this is normal. There is nothing normal with allowing yourself to slowly get sick enough to allow a team to take out your heart and give you someone else’s. I like the term baseline, and my baseline has changed and it will continue to change for a long while for the worse. I try not to think about that, I prefer to think about the time beyond that, when my baseline improves for the better. What a world that will be.

New Path

Every six months I steady myself. I spend a couple therapy sessions talking about my anxieties and worries about my impending cardiac appointments. We talk about all the ways I feel well and all the ways I want to feel better. We talk about the types of testing that will be done and the various ways I dislike the tests and how I can better tolerate them without resorting to complete dissociation which does no one any good. We talk about what I would like to hear and the things I am worried I will hear. I prepare. I am ready. 

Yesterday was my six month appointment at The University of Nebraska. I have been seen there for the last two years and really like my team. I trust them and their style of care. I feel safe there. Since starting with them I have alternated testing; echos in the winter, stress tests in the summer. Yesterday was the stress test. 

I have a long standing hatred of stress tests. If you’ve never had one let me paint a little picture for you. First, you are hooked to a six lead EKG unit which is fastened to your waist. Then a blood pressure cuff and pulse ox on one arm. At this point you are put in either a treadmill or a stationary bike. Thank goodness I do the bike these days because the treadmill is a level of torture I do not wish to ever experience again. Once mounted on your stationary steed comes the nose clamp preventing you from breathing out your nose and the mask that straps to your face like an unruly octopus with a tube that goes in to your mouth so all of the oxygen you take in and blow out can be measured. It’s a real treat. Then…you pedal while monitored by the nurse and a cardiac specialist. And being the sadists they are, they increase the resistance steadily while you have to maintain speed so data can be collected. This goes on as long as you can stand it, preferably at least 8 minutes, until your heart rate hits 160 and in my case everything including your brain has turned to jello. 

I have been “studying” for this test for a year. I got a stationary bike in my house and I used it as much as I could. I really did poorly on it last year and I was determined to go longer and get better data this year. To be fair, that goal I did achieve. I was able to test for longer and get better data. 

“I failed this test. I failed it with flying colors. And here is the important part, no matter how much I “studied” I could not have changed the outcome.”

This is the part that I hope you’re still here for, I don’t want to have this conversation over and over again. I’m not sure I can take it. I want to rip it off like a band-aid and just have it out in the world. I failed this test. I failed it with flying colors. And here is the important part, no matter how much I “studied” I could not have changed the outcome. I say that as much for myself as anyone else.

Yesterday, during my appointment, the one I went in to with the good attitude, ready to hear good news, turned on me pretty quickly. I have known for a long time that my heart is not in great shape but I have been hopeful that I could somehow control the situation. Diet or exercise my way out of the natural progression of my defect and it’s repair. That just isn’t how it works. Small issues I’ve been having for months turn out to be indicators of a larger issue. My VO2MAX score was 11. Last year my cardiologist was not comfortable with it being 13. A “normal” 40 year old has a score between 36-41. 

What does all of this mean? Well combined with other smaller issues, increased swelling in my limbs, cramping, tiredness, it means that my heart failure is progressing. It means that my heart is not able to oxygenate my body like it could before. It means that it is time for us to bring in the Advanced Heart Failure and Transplant Team and get them working with me so that when the time comes no one is in a rush and we have time.

It was a blow for sure. It was a shock. And I am dealing with it in waves. I am having moments of extreme commitment to doing all the things right to make sure I am in the best shape I can be when the time comes for whatever is next. I am having moments of angry tears and sadness. I am having all of it and damn it if I’m feeling it all (stupid therapy, stupid “feeling your feelings”). 

So this is the news. This is where I am. I am okay. I have the best support system. Nothing is happening yet. Things will move slowly for a while. I just put my foot on the start of a new path. I just admitted that there was nothing I could have done to change this. I don’t have control of this and goodness do I love control. I want you to know because I don’t need or want pity. I am okay. I am the same person who walked in to that appointment yesterday. I am curiously strong like an Altoid. I may be a little slower these days but I am strong. I will need help and support to stay the course, to watch my salt, to not overload on water, to eat heart healthy, to move as much as my heart will allow. I do not need to be treated like I am fragile, I need to do as much as I can as long as I can. I can do it. I’d like you there with me.

Circle

 

 

Two months ago I had the wind knocked out of me both literally and figuratively and since then, things haven’t been quite the same. It shouldn’t have been a surprise when after four years living with my ICD (internal cardiac defibrillator) it finally had it’s first go at “thumping” me.

I was on a photo shoot, I was playing with a kid getting him to smile in spite of his instance not to, he was good but I was better. Sure, that smile only came as my physical comedy got more involved but it came and once I had it I was determined to keep it going, my body however had another plan.

Silence. That is what I remember, it was just so quiet. All the noise of cars going by, and the kid laughing at me, and my fellow photographer talking, it all faded to nothing. My vision went from bright white to deep black, and then at once came back with a tremendous thud in my chest. It hurt, it hurt like nothing I’d ever felt before, not the worst pain of my life kind of hurt, but a hurt I had never experienced and couldn’t describe to you accurately if I had unlimited time and words. The best I can come up with is hitting your funny bone, with a sledgehammer, while grabbing hold of an electric fence, while licking a nine-volt battery. It was impact and electricity at once.

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