Tag: congenital heart defect

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.

It’s A No From Me Dawg

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It’s over. Four days of testing looking at everything, head to toe, and literally my big toes, is finished. I won’t bury the lede, I heard back this morning, I won’t be listed for a new heart at this time. I am not shocked or saddened by this news. After all I have gone through over the last two weeks, this is the right call for me right now. As I watched the test come back one-by-one I could see the story that was being told in their results. It is a story of someone whose heart is sick, but whose body and mind are strong. I know what you are thinking, “But Mo isn’t the heart kind of important?” it is, and mine is sick but there are others out there in the world that are more sick. And while the sickness of other people’s hearts doesn’t make mine better, I would never want to be listed when it isn’t absolutely my turn, and my time. Everyone deserves their shot at life and right now I am strong enough, and stable enough to live my life without a transplant. They checked, and that is a win. 

In fact, from my first troubling tests, I have lost some weight and improved my test results somewhat. I’m still not going to be running a marathon next week and no one is saying I am going to diet and exercise my way out of heart failure, or heart disease. These things are a fact of my life, but being as heart healthy as possible is as good for me as it is for anyone. Some things are just medical truths, the less body (mass) the heart has to pump to, the less stress on the heart. The more active a person is, the stronger heart muscle stays. It is no one’s favorite thing to hear, but it is the truth of our biology. 

So what is the plan now? Is transplant off the table? Are they just going to let you get more sick? 

The plan now is to do my best to maintain. The plan now is to work carefully but consistently on keeping this heart healthy and making my whole body as healthy as I can. I have lost about ten pounds over the last three months and I have my sights on at least 20 more. I am hoping to slowly add in some cardio and resistance training to challenge myself and my heart. Again, I am not going to change the cards I was dealt, but I am going to do my best to play them a little smarter than I have been. 

As far as transplant goes, it will never be off the table. The odds are high that this road of mine ends up in transplant. Now, both myself and my team know more about that road than we did two weeks ago. I think we are all relieved that I have the option of waiting a little longer before it is my reality. My end goal, has and always will be, more time. Right now, transplant isn’t the answer for that. In fact, transplant could realistically mean less time. Not because it wouldn’t be successful or give me 10-15 years of a better, more “normal” life but because I want more than 10-15 years. And of course there are those out there who get transplanted more than once, or whose transplant lasts 25 years or more. But no one wants to transplant someone before it is time and potentially cut into the years of their life. Not my medical team, not my support team, and certainly not myself. 

Am I going to get sicker? Only time knows the answers to this. There are some tests that were done that show I have become “sicker”, and others that improved. There are new tests that look like they were taken from a perfectly healthy person, and there are others that show the strain on my body. No one is going to actively encourage me to get sicker. Right now, the plan is to get in better shape, try a new med, perhaps adjust some others, and do the next best thing. I might get sicker, I might not. It might be over the next year, it might be over the next five years. Either way, my doctors are going to be following me so closely I will think I see them in my bushes. I will check with them every three months. I will do heart caths every six months, and I will do my best to be aware of the things in my life that change even slightly for the better or the worse. They are all part of the puzzle and they are all part of how we will know when it is time. Heart transplant has not gone away, it has just gone down the road, and that is okay with me. 

If you wonder how they came to this conclusion, allow me to assure you they looked at everything. Here is a quick glimpse at my weeks at Club Med-icine. 

  • Heart Cath
  • 24 Hour Urine Collection Test
  • Chest CT
  • Pulmonary Function Test
  • Echocardiogram
    • 2 pokes for IV
  • Cardio Pulmonary Stress Test
  • Labs
    • 2 pokes
    • 22 vials of blood
    • 44 blood tests
  • Panorex X-Ray
  • Dexa Scan (bone density)
  • Mammogram (no biggy at all)
  • Carotid Ultrasound
  • Ankle Brachial Index
  • More labs (I know right?!)
    • 1 poke
    • Two vials
  • Bonus Ultrasound Exam at clinic across town to check up on a mammogram finding, all is well!
  • 6 minute walk
  • Nurse Visit
  • PA Visit
  • Cardiothoracic Surgeon Consult
  • Pharmacist Consult
  • Nutritionist Consult
  • Social Work Consult 
  • Psych Consult
  • Two antibiotics for surprise double lung pneumonia

They looked at everything, they even put teeny tiny blood pressure cuffs on my big toes. This is the right call for right now. Thank you for your love and support through all of this. If I learned nothing else, I have learned that my community is large and I have surrounded myself with the best kind of people, and a couple weirdos to keep it interesting. I am thankful for all of you.

Spring Break?

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Three years ago, I spent my spring break out running a pandemic and flying to Boston for a fateful second opinion on my health situation. At the time I was frustrated with the care I was receiving at the clinic I had been with for 10 years. The doctor I had been assigned after my prior doctor passed away and I did not click. I was not the kind of patient she preferred to work with and she didn’t seem to have a deep knowledge of the things I needed addressed most. I don’t blame her, her passion was more in cardio obstetrics and I had no desire to reproduce, we were a bad fit, the clinic had a hole to fill and they tried to put a square peg in a round hole. The issue being it wasn’t a picnic to be the peg or the hole in that scenario and in the end I felt my care and my health were suffering. 

Arriving in Boston I don’t know that I had anything in particular that I was hoping to hear other than, my symptoms were real, and my current care plan (or lack thereof), was not benefiting me. Aim low, and you will rarely be disappointed folks! My appointment with Dr. Fred Wu, was amazing, and yes I am using his full name while I left my previous doctor out of this because I believe praises should be sung loudly and often and complaints are best for mumbling to yourself or boring your close friends and family with. (Especially if you’re pretty sure it wasn’t so much an ability thing as much as it was a personality thing, sometimes doctors and patients don’t click and that’s ok.) He spent over an hour with my sister and I discussing my chart and reviewing recent testing I had done. His overall opinion – I was correct in feeling that my treatment plan wasn’t ideal and I was declining in health. Enter his college friend and local recommendation, my current ACHA doctor Dr. Shane Tsai. Also named, also because I like him. 

This spring break, three years later, I am once again spending my time doing medical appointments. In fact, I am doing four nearly full days of medical appointments and testing. After doing what he could with where I was Dr. Tsai referred me to the heart failure and transplant team, and at our last appointment as you may know it was decided that it is time to have the complete work up to see if it is time to really, for real, list me for a heart transplant. When they told me it would be four days of testing I thought surely they were exaggerating, I thought they must be preparing me for the worst case scenario of scheduling. That is not in fact the case, they said it would be four days of testing and appointments because that is exactly what it is going to be. So many appointments and they are going to look at everything from head to toe. I have 52 different blood tests you guys! 52! I didn’t even know there were 52 things in my blood. To paraphrase the adorable Andy Dewyer from Parks and Rec, I am going to get my ankles microwaved and all my blood taken for science. 

The upside, my whole family will be hanging out with me while I shuttle from ankle mirowaving to blood letting. They will take turns, or double up, etc. through the week, cook for me while I rest in the evenings, and in general keep me entertained while we navigate this giant gauntlet of the unknown. My mom is bringing us gramma cookies, and promises to make me chicken and noodles. It ALMOST makes the fact that I have to collect all my urine for 24 hours worth it. Almost. That is going to be a real treat. 

Last week, I had a heart cath. It was actually one of the easiest and dare I say darn near enjoyable heart caths I have ever had. I really loved the doctor and I was able to have light sedation, be accessed through my neck, have a sandwich and cookies as soon as I was back in the room. All that and I got to go home within two hours! The findings weren’t surprising and weren’t altogether great. My heart failure is progressing. No one thought it would hit the pause button so it wasn’t shocking. I am unsure if the rate is surprising or not, that is something we will talk about next week. As I have said a million times in the last few weeks, you don’t get this far along in this process because you’re doing fine. Sometimes it is weird to think I am as sick as I am. I absolutely do not see myself as a sick person. I wake up every day and do my best to push myself out of bed, and through my day. I want to be as “normal” as I can be. My doctor has remarked more than a few times that most people who are this far in the process aren’t still attempting to work. So take that expectations. Spite is a powerful motivator. 

I will update next week as I can and feel up to it. It is really going to be an undertaking. I think I am ready for it mentally, but physically it will be more demanding than I usually put myself through which often impacts my state of mind. Stay tuned on my socials (ugh did I just say that) if you want to know what is up. I doubt I will be writing any blog posts, but who knows maybe I will be inspired. Thanks for all your well wishes and kind thoughts. Until next time.

Only Monday

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I woke up at 3:45 this morning and couldn’t go back to sleep. I haven’t been sleeping well the last few days. I also haven’t been feeling my best, it is almost like you don’t get this far in the heart transplant process because you are a healthy person with no reason to feel crummy. In addition to the crumminess I just have been kind of sad. In the period of two weeks, people I have known since they were kids passed away in one way or another from complications of their heart defect. That just never gets easier, especially when they are younger than me. The universe doesn’t do a whole lot of trade in fairness I have learned, but it doesn’t mean I don’t always hold out a little hope that one day that will change. 

So here it was almost 4am and I couldn’t go back to sleep. What is a girl to do besides grab her phone and lull herself back to sleep or at least sweet dissociation by the gentle glow of her smartphone and the promise of an infinite scroll? I round the usual bases, Instagram, and Facebook, and on my way to Tik Tok, I make the mistake of checking my email, it is hard for me to resist the siren song of the red circle indicating new messages. They have to be dealt with (see also; deleted) as soon as possible, the red circle is my mortal enemy and it must be vanquished. This dear reader was a mistake, for the email that awaited me at just after 4am was from my medication subscription service, and they were letting me know about the medications that would not be included in my next order without action. If I wasn’t awake before, I was now.

The first of the year is a real pain in the ass for the chronically ill, especially the chronically ill who take a large number of meds, and even more so if those meds are thousands of dollars without copay cards that have to be obtained, and resubmitted each year. I take 5 medications that cost over a thousand dollars without copay “coupons” that knock the price back to $10 which is great but the series of hoops to get these cards, and register them with the correct places is a pain in the butt. I have been dealing with prescription issues since December, and I would guess I will be until April. 

I immediately begin to dread the phone call I will have to make in the morning but I also know I will have to make it. I absolutely cannot go without my meds, not for one day, let alone a month. I calm myself down (I just get so tired of the hoops) turn on the sounds of gentle rain, and get another hour and a half of sleep before I have to really be awake. 

The moment I have a free second at work I take the chance to make a call to the pharmacy. I plead my case to the woman on the other end of the line. I have a very strict “be nice to the person who answers the phone it isn’t their fault everything is jacked up” policy. Her name was Nona and she was lovely. It took about 10 full minutes of checking this and that and we got things sorted (I think, I will check again in a week to be sure). She also let me know that my request to add the four medications that have been prescribed in the last year but are not in my pill packs could not be added. I would have to contact each provider and ask them to send in a new prescription. Again, it isn’t the person who answers fault. I thanked her and went back to class. 

Thankfully today we watched an episode of Cosmos in science and I had time to message four different doctor’s offices to make my requests. I even heard back from three! Not bad. All of this and it wasn’t even noon yet. 

While sending messages in MyChart I noticed that the appointments for my transplant evaluation were being put in. They were not kidding when they say it is three full days of appointments. It was at this point that I started to feel the anxiety building. Things have been getting real for a while now, but this made it even more so. I reached out to my family text and told them the kind of things I was worried about that they could help with, getting an Airbnb set up, making their travel plans, and generally anything that wasn’t actually doing the testing. They as always came through almost instantly. By the time my third viewing of the Cosmos episode was over I was feeling a bit better.  Thankfully I had a pretty full plate the next hour and was able to concentrate fully on the kids. 

I have to make a slight aside right here. My students have been so good about my absences and understanding my limitations. They are little rascals, don’t get me wrong, but they do have kind hearts. 

At the very end of class just as we had finished our work my phone started to ring. Normally when I have students I don’t answer but I saw that it was the Children’s Hospital in Omaha calling, I had a feeling they were trying to get something scheduled. I asked the kids to give me a moment and took the call. It was indeed a scheduler wanting to see if I could schedule my next heart cath…for tomorrow! Apparently, my team decided they wanted a heart cath before all of my other appointments and in order to give me my usual doctor the only day they could do it was tomorrow. That was not going to happen. I know the whole transplant process is hurry up and wait. I just didn’t know they would do all the hurry-up part while I did all the waiting. I asked for a different day with a different doctor and got it scheduled for two weeks from now. The stress level was hitting critical levels. It was time to call my mom. I sent my students to lunch and did just that, have I mentioned that all of this has happened and it was barely past noon? Mom talked me down and I was able to function the rest of the day without incident. 

It is now 7pm and I am exhausted. I have a feeling I will finish writing and posting this and be tucked away in bed before 9pm. This was just a Monday after a Friday when I was so tired I could not get out of my bed. Tomorrow is a Tuesday, and I will message my former doctors for records that my new doctors will need as I move forward, and maybe I’ll even get that dentist appointment scheduled too. Did you know you can’t get a heart if you have crappy teeth? Gotta get those pearly whites checked out. Thursday I get to go to the CPAP store because my old supplier couldn’t understand that I got a new machine and messed up my orders all the time. I did the right thing when I fired them but then I found out that in order to get my supplies from a new provider, I have to have an appointment to be taught to use a device I have been using for five years. It isn’t the person who answered the phone’s fault. The red tape is everywhere, and it makes me tired. I am very tired and it is only Monday.

Enough

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I have struggled much of my life with the feeling of enough. Being a sick kid I was always worried that my contribution to my family wasn’t enough to outweigh the cost of time, money, and mental bandwidth my illness required. Once upon a time, and more than once my father remarked off the cuff that I was “more trouble than I was worth” to him the comment was a joke, it was innocent, it was a throwaway remark meant to tease me about my clumsiness, and my tendency to end up in the ER. To me it was an admission, he confirmed what I was sure I knew, I was not enough. 

Therapy has helped. I have learned that my worth is not derived from others. The concept of enough however seems like it is ever-present. Lurking. Cruel. Being enough. Not having enough. Having ENOUGH. 

This transplant journey has brought up its own enough. Is how I am living enough? Have I truly had enough? Am I sick enough? Am I worthy enough? 

One of the hardest things about being an adult with a congenital heart defect that is being considered for a heart transplant is that a lot of the usual ways of determining candidacy don’t align with the issues that we have as our health declines. To look at me, most people wouldn’t believe I am in end-stage heart failure, but here I am, crushing it. The thing with people with CHD is the decline in our health is often so slow, over a lifetime, that in ways we almost don’t notice our quality of life slowly slipping away. Tests meant for acquired heart disease don’t always accurately measure how sick we are, or how sick our hearts are, because the very structure of our hearts isn’t typical, and neither are the ways in which it can fail us. For a long time, doctors told me that a big indicator of whether or not it was time for me to have a transplant would be my ejection fraction (the amount of blood your heart can squeeze out each time it constricts), when last “measured” my EF was 25. In a typical heart, an ejection fraction in this neighborhood would put you on track for a transplant. For me? I got a defibrillator and resynchronization therapy. That has worked fairly well for me for the last 10ish years, during which time the medical community has decided that ejection fraction is actually not a useful or accurate measure for people with a systemic right ventricle (the one that does the bulk of the pumping) like me. More recently I failed with flying colors a different test that would indicate heart failure and transplant, but my heart cath looked “good” for someone with my defect. The question now is, am I sick enough for a transplant? A question and answer that is way out of my hands. 

The caveat of “for someone with TGA…” has been thrown around a lot in my life, it is often used to curb enthusiasm and lower expectations. It often feels like  “Don’t ask for more than you have because, for someone with TGA, you should be thankful just to be alive. That should be enough.” Do not mistake me, I am incredibly thankful for the series of events, and miracles even (and there have been many) that have led to me being alive at 40 but, I am no longer sure that not being dead is enough. I miss living. I miss the freedom of a more healthy body. There are things that I don’t even know that I miss because they are things that I have never known. It isn’t that I am not happy, we all know that I am a generally happy person. It isn’t that I couldn’t possibly continue to coast. It is that it isn’t enough anymore. As Albert Einstein (or maybe John Shedd) said “A ship is always safe at the shore, but that is not what it is built for.” it is true that I might be safe, but this isn’t what I am meant for. 

On the other hand, there is the magnitude, the cost of the gift I am asking for, the desire I am putting into the universe, and the price of taking my ship out of the harbor again. Could anyone easily say they are worthy of such a gift? I have been uniquely close to both sides of organ donation. So many of my friends have received the gift of life and in my second-hand experience receiving an organ is a solemn celebration. I have also known the pain that comes with losing someone I love dearly tragically, and the heartbreak of letting them go. It is true that knowing when I lost my friend others were given a chance at life through the gift of organ donation was comforting and the choice made by those that loved him was absolutely the one he would have made himself. Knowing that isn’t enough though, it isn’t the same as being able to laugh with my best friend, hug him tight, and listen to all the ways what I am writing right now is valid but in the end, doesn’t matter because I deserve to be happy and healthy both at the same time. Dammit. This is not where I thought this entry would end, but I feel like I reached a conclusion, with the help of my friend. I deserve to be happy and healthy at the same time, anything less than that isn’t enough.

It’s not tomorrow.

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“It’s not tomorrow.” 

That is the phrase I have been telling myself and my mother at the end of each conversation we have had since Ashley, the nurse coordinator and my self-proclaimed “newest cheerleader” handed us “The Packet”. Perhaps not THE packet but definitely a packet, a packet that indicates we have taken another step in this transplant process – a packet outlining a whole lot of scary scenarios and less than favorable outcomes. “The Packet” includes a whole lot of places to sign acknowledging understanding of all kinds of things, I would tell you what but if I am honest, I have only skimmed “The Packet” I am not quite ready to read it in full. I am going to take it to work, scan it in, send it out to my team and hopefully soon we can talk about it together. I don’t want it to live in my head with just myself to absorb it, I want to look at it with MY team ready to help me interpret, dissect, and digest its contents. 

Until now I have only been monitored by the Advanced Heart Failure and Transplant clinic, with the knowledge that transplant is in my future. During my appointment this week, on the suggestion of my doctor we have taken one more small step and I will be doing the actual evaluations for heart transplant. Please understand, this is still the very base of the mountain. There are many hoops here as well, many approvals to get, and then many tests to schedule. 

THIS DOES NOT MEAN I AM OR WILL BE LISTED ANY TIME SOON. 

Read that again. I am not listed. I may not get listed at this point. If I am listed after this, I likely have a very long wait ahead. This is all just the evaluation process. I am super stoked to have found out during this appointment and testing that there are no concerns about my liver currently, which can often be the case in people with congenital heart issues. We can all celebrate that. As Bruce Bryan would say “Put that in the W column.”

There is still a lot of time in this process. There are still a lot of unknowns in this process. There are a lot of big feelings in this process. The only thing I know for sure right now is, it’s not tomorrow. My family and I have time to absorb and digest this information, and as always I promise to update when the situation changes. I appreciate all the love and support from my people. You all have made your presence known in ways I did not expect and am not entirely certain I deserve, but I am grateful. 

Until next time.

Scars

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When I was in elementary school, we had an indoor swimming pool. A few times a week our classes would get to put on our bathing suits in the middle of the school day and take swimming lessons from our PE teachers. I was never a particularly modest child, in fact it was all my mother could do to keep clothes on me as a little thing. I was forever standing in front of the television in my training pants making muscles for my family to see. I was comfortable with my body, and I really didn’t have any thoughts about the still pink scars that graced my chest. They were as much a part of me as my fingers or my toes. So when one day sitting on the edge of the school swimming pool a little boy in my class asked me what happened, gesturing to the scar on my chest, I froze, and after a million thoughts ran through my six year old head I told him, “I fell on an ax.” I could live another 100 years and still have no idea why those were the words that escaped my six year old lips, but they were. 

My relationship with my scars has always been complicated. I spent many post-bath moments observing my scars as a child, they were to me, the only thing I had as proof of the time I was told I spent as a baby fighting for my life. While everyone around me remembered that time, all I had were the scars. I spent a lot of time in my teens doing all I could to hide my scars, believing they were ugly and not wanting to show anyone what I thought of as a weakness. As the years have gone by I have come to feel pride in my scars. I still spend time observing them in the mirror, (clothes still aren’t my thing if I can help it) and thinking about where they came from and where they have gotten me. Many nights to this day I trace each bump and curve in the scar that sits center of my chest, until I fall asleep. 

It shouldn’t have surprised me then, how today I was suddenly overcome with sadness at the thought of the eventual reconfiguring of my scars. When the time comes for transplant the incision will be on top of my current scar. It will be larger, and likely much gnarlier than the scar that started on a one year old baby and grew with me over time. I have never minded new scars joining the others, but this one will change the topography completely. And while I have thought frequently about how many emotions are tied up in my actual heart and saying goodbye to it one day, I don’t look in the mirror and see my heart. My heart isn’t the outward reminder of why I am who I am and what I have been through. While it is true that I have never let my heart condition define me, it has certainly shaped me into who I am. So today I felt my feelings, first in my car, out of nowhere, then on my therapist’s couch, and later as I shed a few tears in front of the bedroom mirror. I have carried these scars since before I could remember. They have been the things that remind me that if I could do it as a tiny baby, I could do it as a teen, or an adult. I imagine there are more of these kinds of things that will come up as I sit here in the unknown. Minds wander as they wait and I have never been good at waiting. 

I am glad this all came up today, it gives me a chance to think about what I can do to come to terms with this change as much as I can now, so it won’t be as hard later. Until then I will continue to observe in awe of the landmarks of my life that adorn my chest. Each glossy white river of mended flesh a testament to the strength and perseverance of the me who came before today.

What now?

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Ten days have passed since my family and I had the first of what I now know will be many appointments with my new specialist. My biggest worry about the appointment was that having all of us present would be overkill, that this appointment wouldn’t be all I had made it to be in my mind and that I had “wasted” my family’s time and resources for nothing more than moral support. As it happens that was exactly why they came, and the fact that they needed to hear what I was going to be hearing as much as I did. As a family we love a plan, we are terrible at agreeing on one, but we really like to have one, and having this huge news and no real plan has not been going well for any of us. 

When we arrived at the appointment I was certain we would not all be allowed in the room together. Since Covid things like that have been out of sorts and I have felt lucky when one family member could be present, now with three I was pretty sure I would be going in at least one man down if not two. When the nurse came I turned on the charm and perhaps a bit of the guilt, she tried to tell us that only two people could come back (only two chairs) I assured her that one of them could stand and that we would be having a very important conversation about transplant, could she please let us all come back (eyelashes, eyelashes, puppy face). Thankfully she did not seem to be too bothered by this request and was mostly worried about one of my sisters not having a chair. No worries, there was a very low, chair height counter in the room, Aimee would just sit there. Easy peasy. 

Sat there in the room, the three of them lined against the wall, our questions planned, (they really boiled down to, “what’s your whole deal?”) we waited. My mom, obviously nervous but keeping it together, had been in so many rooms like this one with me over the last 40 years all leading to this one. I wouldn’t dare think I could possibly know what she was thinking. She keeps the memories that I can’t reach, the ones I was too small to remember, she is my living diary of all that has happened, and has always been told what may come, that this day may come. I know that it was a bit overwhelming for her, for us all, and that is why I was glad we were all there. My sword and shield sat beside her. Rachel, my sword, ever ready to fight for me, through red tape, against bad plans, for more data and facts, her only intention – keep me safe. I give her a hard time sometimes about her questions and her protectiveness but I wouldn’t be able to do what I do without her always ready to back me up. Aimee, my shield, prepared to take over the listening duties and allow me a moment to compose myself if needed, ready to provide a reprieve from any tension. She finds ways to make sure if I need a moment, I get one, she is the one who always reminds me that this is my show, and we do what I say, even the doctors. We make a good team, the three of us. 

My appointment went well, we all really liked my doctor. I really liked my doctor which is important when you are talking about the person that you are trusting your actual life to. He was kind and talked us through each step of what comes next. He answered questions and spent nearly a full hour with us. He laughed with us, and he was real with us. This isn’t an easy place to be in and it comes down to this – what happens next, and when it happens, is largely up to me. We are going to try a few things to get me feeling better in the present, see if there is any way that what we are doing with a couple new meds makes me feel good enough to hold off on listing for a while longer.

He and my team are going to follow up with me constantly and keep a close watch on the progression of my heart failure. It will end up that I will be seeing someone on my team about every 1.5 months. And, if there comes a time that they see something that moves us along, that is what we will do. Also, and I feel just as if not more importantly, if I report to them that I simply do not feel well enough to keep trying new things, we stop, right then, and on my call and we take the next step. No one wants me to have nothing left to give when I am listed. In fact, he wants me to be in better shape than I am if at all possible, he wants me to be able to bounce back as quickly as I can and being in better shape is the way to do that. 

So, that is where I am at. My therapist asked me what would make me delay making the call, and what would cause me to make the call. It comes down to this. Currently, I have just enough in me to make it through an average day with no crazy variables, and nothing more. My quality of life isn’t super great. I miss the things I could do even a year ago. I couldn’t make it through a concert now if you paid me. If I can get to a point where I consistently feel 10-15% better than I do right now, I might be able to wait. If I can get back to even a few of the things I was able to do before, I might be able to wait, but if I stay the same or progress at all, it is time. It is time to get my life back. I am ready to be on the other side of this, I am ready to know what comes after this. What comes when I have a heart that can keep up with all I want to do in life? Whether that is in 3 months or in 3 years, I am optimistic and excited for what that future looks like.

Front of a card my sister Aimee sent me. Artist : Jennifer Durand

My People : Part 1

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One of the lessons that was hardest for me to get in therapy, was that there is good in all situations. This is a hard thing to believe for someone who has lived a life that has had more than its share of trauma and hard times. It is hard for a brain with C-PTSD to look at the hardest parts of their life and think, “That was bad, but hey, silver lining!”.

I didn’t see things like building resilience as an upside to the things I had been through. I thought I would rather have no resilience and an easier path. For a very long time I had a horrible time accepting the compassion and empathy of others. Receiving those things made me feel like people felt entitled to more of me than I wanted to give them, I thought that they simply felt bad for me, the “poor little sick girl”. I hated to feel pitied or worse and for lack of a better term like inspiration porn. I had many lessons early on  that taught me to be leery of people who did not know me well, yet were overly interested in the circumstances of my life (thanks dad!). I had to unlearn what I thought I knew and come to terms with what was more likely –  most people are compassionate and genuine with no strings. 

This week I was given what felt like my final exam on this exact subject. Could I accept true kindness and compassion without feeling like I was being pitied, or portrayed as a victim of my own life circumstances? 

Before I get into my final exam I need to adequately describe how uncomfortable displays of solidarity, compassion and generosity previously made me. Perhaps uncomfortable is the wrong word, let’s try blindingly angry, yes I think that fits better. Previously when I was on the receiving end of acts of kindness, and generosity due to my medical condition I would enter my therapists office fuming, raging, mad. I felt like I was in a Catch 22. I needed people to know about what was going on with me in order to be safe in case something went wrong, and to be understood when I needed time off to deal with it. I could literally not fathom that a side effect of people knowing my situation would result in genuine concern and desire to help. When those things happened because I surround myself with good people, I wanted  to crawl out of my skin and into a dark little hole. I didn’t want to be seen anymore. I felt like I had revealed too much. Like the Wizard of Oz, they had seen behind the curtain and knew that I wasn’t great and powerful, after all, I was in fact just a human, doing her best. At the same time I was angry to have people’s empathy which I mistook for pity, I also felt incredibly guilty for people having any feelings towards me at all. I felt like I had gotten “too close” to people, because I wanted to minimize fall out if something awful did happen to me. I felt unworthy of the love and kindness I was shown. (Have I mentioned that I have been to a lot of therapy and am doing much better now?) 

I am incredibly lucky to have worked in a phenomenal school, with amazing people for the last 15 years. I have worked with most of my closest co-workers for that whole time. Having people I am familiar with and are familiar with me has been an incredible blessing over the years where my health is concerned. They have always had my back and made it as easy as it can possibly be for me to take the time I need to deal with my health. I have not always been the best at receiving that kind of support, but they have always taken awkwardness in stride. Earlier this week they truly outdid themselves.

I arrived at school wearing a tie-dye shirt, super typical for me. I was amused and delighted that many of my friends and co-workers coincidentally were also wearing tie-dye. How crazy! I commented over and over. I am rambling on about the amazing coincidence of all the tie-dye and rainbow colors everyone is wearing when my co-worker fesses up and says to me “We did this for you.” I thought she was joking and I laughed, “Yeah you guys planned to be a rainbow for me.” Everyone else in the room nods their heads and confirms that yes indeed they planned this for me. In fact they tell me the whole staff is wearing tie-dye and rainbows for me and by the way I’ve just been Venmoed an incredibly generous amount of money the school raised for me last week. The only coincidence happening here was that I decided to wear tie-dye  too. Amazingly no one hinted I should and no one told me. My therapist would call this a synchronicity, an outward sign that we attract what we need in our lives. I am beyond thankful to have attracted these much needed people into my life.

The donations were extremely kind and generous but I have to say walking around and seeing my coworkers (many I don’t know that well) dressed in tie-dye for little ol’ me? It was an incredible sight. It was just amazing to have a visual of all the people in my corner, just in this one place, this one building, altogether about 50 co-workers were dressed in tie-dye, it blew my mind. All of this, and not one time did a single one of those pesky thoughts that I have had in the past about being seen as weak, or someone to be pitied. No worry about what knowledge or access others may feel they were entitled to, and no feeling unworthy of the demonstration of love and kindness was in sight. I did it. I passed this final exam. Never (yes never) before have I been able to receive this kind of expression of solidarity and love without later feeling overwhelmed by those negative thoughts and feelings. 

I am so thankful for all the people in my life who have been so kind and supportive of me. I have such a vast and diverse network of people who I love and who love me. I am not quite sure what I have done to deserve them all. I haven’t even gotten to the hard part yet and my people have shown up, from every part of my life, in every way I could ask for. 

Aunt Mo

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The summer of 2007 was a very strange and difficult time of my life – my early twenties. I had recently turned 25, lost my long term job that I loved but was killing me, and had met a friend with a heart like mine, only to lose him a few months later when that heart suddenly failed him. I spent a long time on my couch feeling sorry for myself, a really long time. My best friend and roommate would go to work, leaving me in my pajamas on the couch and come home 12 hours later to discover me in the exact same place. It wasn’t my best moment. To say I was floundering would be kind, I think some may have even called this my personal quarter life crisis. 

Enter stage right a wild haired baby boy, who would give me the name that I wear with most pride, Aunt Mo. I don’t want to overstate the importance of this little man’s birth, but it is pretty easy to say that his arrival was the catalyst for a lot of change in my life. There was this moment after my nephew was born that due to a series of unfortunate events, he and I ended up in a hallway together. My sister, her husband, our mother and a nurse were all in the new hospital room where the new party of three had been moved because of construction noise and somehow this left my hours-old nephew and I alone together for the first time. He was wide awake, and taking in the world around him, tufts of unruly hair peeking out from underneath his tiny hat. He smacked his mouth, made little squeaks, and waved his arms around. He was so small, and his eyes so wide. That moment has always felt very important to me. At that moment I knew two things, I wanted to be around this tiny human as much as my sister would let me, and that in order to be around this tiny human I was going to have to get my poop in a group. Depending who you ask, that is what I did, at least comparatively. 

This is all to tell you that,  of all the things I am, being his, and his cousins (and that previously mentioned  roommate/best friends two boys) Aunt Mo is my absolute favorite thing to be. It changed my make-up and truly the course of my life. Suddenly it wasn’t just about me, I had this little dude who lit up every time I showed up at his house, who reached for me when other people were holding him, who learned my name quickly after mama and dada. I spent a lot of my teens and twenties fighting against my health challenges, avoiding the doctor as much as I could, not taking my meds how I should be, living my life in less than healthy ways. I had a live fast die young kind of attitude. I really didn’t believe I would be around that long, so I didn’t do a whole lot to help myself out, until my nephew came along. He made me want to try the next thing, the new med, the next fix. Where I was once bitter and angry, I was optimistic and hoping for any solution that meant I got as much time as I could possibly have with this little dude that showed up one September afternoon and completely turned my world upside down. 

I write this all because I think it is an important piece in the puzzle of how I ended up here, a week away from seriously discussing heart transplant, and honestly not being very fearful. I was, for sure. That was the shock, and in some ways I suppose there is still some fear mixed in there, but more than anything I am excited. Everything I have said yes to over the last 15 years has been about having more years with my nephews. From the pacemakers, to the ICD, every heart cath, stent ballooning, ER trip, device shock, every test, every blood draw, every new medication, and every side effect has been in the pursuit of more time. More time for me yes, but in the beginning and still most largely for him, that crazy haired baby in the hallway that I knew I wanted to see grow into a man. And for the twin boys who came two years after him, who are my soul’s own twin, and my brilliant and delightful opposite. 

I know they are apprehensive about what is to come for me. It is only fair that they would be. I can’t promise them that everything will go exactly as I plan for it to go, but I have every intention of everything going right. I expect to be there when they graduate, get jobs, move away, try to lose touch and fail because I am an annoying and clingy aunt. I plan to be there as they become fully functional people. I hope one day, one of them has a house big enough for old Aunt Mo, to move in with her ancient Corgi and too many books. 

I am so proud of who they are. I am so thankful that they, as much as they can, understand that sometimes I need to borrow their moms, my sisters, because we are an important team. I hope that one day they feel as much a part of that team as I feel like they are. They are the best part of the team, the light part, the part that brings the joy and the laughs when everything else is too serious. I hope they know that their Aunt Mo loves them so much, that she learned to love herself too. I hope that they can be brave with me as we walk this road together. I hope they know that it is okay if we can’t always be brave, and it is okay to be scared, because even the scariest things aren’t that scary when you are on our team, and I am on their team always. I hope they know that more than anything else in the world, I am so glad to be their Aunt Mo and I plan to be there for them for a very long time.