Tag: journal

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.

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

The Ugly Truth

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The ugly truth is, all of this is easier without him. Something I have finally allowed myself to admit, to say out loud, to take the first steps to work through. I am not 8 years old anymore and hindsight truly is a gift to vision, and I see clearly that no matter how I wanted him to be different, he simply was who he was. 

I have debated writing this, wondering if this crossed the line of what I am willing to share publicly. I also know that I have many reasons for writing these excerpts from this time in my life and I want to tell this story fully. Letting this stuff out is helping me, but I am starting to see that it is also helping others. Lots of isolating feelings grow in the dark, the best way through them is to show them the light, and if showing some of those feelings the light here helps others, all the better.

My father was a simple man that in many ways was complicated. If you knew him you would probably describe him as the type to give you the shirt off his back. I can’t disagree. He likely was like that –  to you. It wasn’t so much like that with his family, at least not his daughters or their mother. There is a whole lot to that story that isn’t just mine to tell and so I won’t, I will only tell the part that is mine to tell. 

I don’t know if dad ever really knew how to cope with being a parent much less with being a parent of a “sick” kid. All I know is that every memory I have of my early life in hospitals, when my parents were still married, is of just my mom and I. Every doctor appointment, every hospital stay, every surgery. Just mom and I. I can’t say that is 100% accurate, I am sure there was a time or two he was there or it was him but I don’t remember. I know he took me to the ER twice with a broken arm, just he and I, once the first time I broke it on my roller skates and then again the day I got the cast off and broke it again falling off a horse he put me on. That was dad. 

Once my parents were divorced however dad made my medical appointments a spectacle. He had to attend every one and make sure he was as much the focus as possible.  He didn’t usually come into the room with mom and I, preferring to stay in the waiting room and play his favorite game “my kid is sicker than your kid” the prize?  The sympathy of strangers. I hated that game. If you know me at all you know, the last thing I want from anyone is pity or sympathy. Still, he played on. Every single appointment, I would come into the waiting room to some random person telling me how “strong” or “brave” I was. All I could think was how much I wanted to stomp on his foot and run to the car. I hated feeling like his little trained monkey. It was the same act with women he dated. It would come time for me to meet them and the only thing they would know about me is that my heart was backward. It seemed that was the only thing he knew about me either. 

As I became an adult our relationship became more and more strained. For reasons I no longer remember (likely spite), he wanted me off his insurance the moment I turned 18. It was really great insurance, I could have stayed on it until I was 26 but he wouldn’t have it. My mom took the insurance over. Even though my medication and medical care was extremely expensive, and he was financially very secure he rarely helped. He could buy all kinds of “toys” but it took near groveling to get any help with such expenses. He had this fun habit of waiting until the very last minute when there weren’t a lot of other options so he could swoop in and be the hero, strings attached of course. Always strings. 

In an effort to not sound like all I wanted from him was his money, allow me to elaborate further. I had many hospitalizations and surgeries through my 20’s and 30’s. I always made sure he knew about them. I made sure he knew what was going on, what hospital I was trying, what surgery, what medications, etc. I kept him in the loop, even if he wasn’t invited to be there because I was over his behavior when he came, he was always informed. Beyond the moment I informed him of what was going on, I wouldn’t hear from him. He never called, text, sent a card or a carrier pigeon. He never checked up to see how I was. Never. 

I had my first major surgery since I was a baby in that time frame. My chest was opened in three places, recovery was incredibly tough with a collapsed lung. I was in rough shape. He knew what was happening, my sister had called him. He never called me. My sister told  him how rough it was for me and still I did not hear from him. He did not call me. He did not check in. 

In the final years of my fathers life, as angry as I was about these moments I swore I would be the bigger person. If he was having surgery, I would drive the hours to where it was happening and I would visit. If he had a heart attack I would be there. I showed up. Every. Single. Time. And there were a lot of times. Those visits were not conditional, I was not going so I could say to him, “Hey I came and checked on you, you need to check on me.” I was going because I wanted to make sure he didn’t feel the way he made me feel when he didn’t at least check in and see if I was okay. I wasn’t going to let who he was change who I was. I was the kind of person who visited their dad in the hospital even if he wasn’t the dad who did the same. 

So the ugly truth of the matter is, all of this is easier with him gone. I don’t have to have my heart broken by his callousness. I don’t have to worry about him using my situation  to gain other people’s sympathy without my knowledge or consent. I don’t have to manage my disappointment when he isn’t the dad I always wished him to be. The kind of person most people would say would give you the shirt off his back, but wouldn’t pick up the phone for his own daughter. I don’t have to endure another heartbreak at his hands. 

There aren’t a lot of people who understand the complex feelings that come with having a father like mine. I get that. I am glad for that. Let me make one thing very clear, for anyone who may feel like this post is mean, or even cruel. I loved my dad, to the very end I loved him. Our relationship was complicated, and broken, and in many ways so was he. I know that. I have spent a long time and a lot of therapy  coming to grips with that. I have also learned that two things can be true at once. I can love my dad, I can even miss him, and still be relieved that I don’t have to endure more heartache. I can still be mad as hell for the way he let things play out, I can still be so sad that he never seemed to understand that I was trying to show him how to love me, and he just never seemed to be able to do it. It may be ugly, but it is the truth.

One of the biggest lessons I have learned in therapy is that sometimes people teach us really important things in really negative ways. My dad more than anyone taught me how to forgive. He taught me how to keep a cool head in the moments his was not. And most of all he taught me to remember what comes back when I give away my love, because it isn’t always the love you want or deserve.

“But most of all
He taught me to forgive
How to keep a cool head
How to love the one you’re with
And when I’m far into the distance
And the pushing comes to shove
To remember what comes back
When you give away your love”

Brandi Carlile – Most of All

Surprise! You’re sad.

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Lately my feelings have been a jack-in-the-box. Life just keeps turning the crank, and I think I am keeping it all together until suddenly, when I least expect it, pop-goes-my feelings. Usually this happens in the quiet moments before sleep. You know that time, if you’re like me, is some of the only time in the day where you give your brain a moment to get quiet and wander. Wandering minds can be a dangerous thing for people who are trying really hard to keep their thoughts and feelings in check. Even more dangerous are sleeping minds, minds that are beyond our control completely, minds that do whatever they need to do to draw our attention to the issue that we are ignoring. 

Let’s start with Monday. Monday of this week I woke up with a thud, a jerk of my head and body that was so extreme I thought for sure I had just experienced a shock from my ICD. I was absolutely certain of it. It is not a fun way to wake up, but it also was not the first time I have been awoken like this. I did a body scan. My chest didn’t hurt. My heart rate felt normal. I grabbed the blood pressure cuff I keep on my bedside table (doesn’t everyone?) and took my pressure, low but in the normal range. My head hurt pretty badly, but other than that, everything felt normal. I text my sister. She was present the last time this happened. We talked it through and decided that I should probably be very sure before I attempted to go to work. I messaged my work, it was 5 a.m. the doctors wouldn’t be in for hours still and I was exhausted, a little freaked out, and did I mention my head hurt? 

When I woke up and only my head hurt I was pretty certain I had a phantom shock. A real shock would leave my body feeling much worse for the wear. I slowly get myself going, I took a long shower, ate breakfast, and got dressed. I waited, did another body scan (when I say this I just mean I spend a moment or two in silence really feeling how my body feels by concentrating my attention on different areas) I felt okay. No shock detected. Why do phantom shocks happen? “They found that the phenomenon primarily occurred in patients with a history of traumatic device shocks, depression, anxiety and PTSD. They conclude that memory reactivation of traumatic events seems to contribute in the pathogenesis of phantom shock.” Clin Cardiol, 1999, vol. 22 (pg. 481-9) Basically, I have PTSD and somewhere squirreled away in my subconscious is the memory of the shock I received so many years ago and that I didn’t even earn but scared the life out of me just the same. Now, sometimes when I’m “fine” but not so secretly carrying around stress, that memory finds its way into my unconscious mind and rears its head forcefully, and convincingly. 

I mentioned this incident to my therapist I said “They say these phantom shocks are brought on by stress and anxiety. I thought I was doing okay, but maybe I’m not.” Her response? “Maybe parts of you are okay, and parts of you aren’t.” Shh. I’m fine, remember? She followed up, “My take is that you are feeling understandably vulnerable”. Ugh. I reminded her that to me that is the worst of all the feelings and quickly changed the subject. It is much easier to duck and weave from your therapist when you aren’t actually in their office where they can play defense or maybe it is offense…more directly. Also, she was right and I was in the mood to hate that. I feel like I spend a lot of time dealing with my feelings, I’m just not the greatest at truly feeling them. I have good intentions, and I mean to but when it comes down to it most often feelings have to catch me off guard and attack. 

Case and point an understandable but odd bit of sadness that struck me last night as I was falling asleep (I told you it is always sleeping or bedtime). I have a heart cath coming early next week and I was thinking of the things that I need to get in order beforehand. Suddenly I was completely overwhelmed with sadness. If things move the way my cardiologist predicted this is very likely the last heart cath this heart will have done. I am not particularly keen on heart caths or anything, they certainly don’t hold a lot of happy memories. Though there is that one time that Charlotte got to be my nurse and my femoral artery wouldn’t clot so we got to spend quality time with her applying direct pressure to my groin, that was kind of funny. That same visit Julie was the last nurse standing and we got to hang out until way past her shift ended because they wanted me to have a bed for overnight but one never came so Charlotte vouched for me that this wasn’t my first rodeo and I would return if I started to bleed out, (I did not in fact bleed out). So while I don’t have any particularly fond memories of heart caths it was just the thought of this being the first “last” for this heart. It struck me harder than I would have imagined. Lasts are hard, even if they are for the best.

It doesn’t help that you are talking to the person who personified everything in her youth (and maybe still has that habit). No stuffy slept on the floor for fear that I would hurt their feelings, when my mom got me a “pet net” for the corner above my bed deciding who went up there and who stayed on the bed might as well have been deciding who lived and who died. I guess in a not so subtle way I still feel like that now, this heart has been loyal, it has been through hell and back and done everything that was asked of it and more, replacing it feels like a bit of a betrayal and facing this first, “last” just really drove that thought home. So, the jack-in-the-box popped open and the feelings jumped out. It wasn’t so much the feelings, but the when and why that surprised me. I knew more feelings would come, I think it will continue to be a mystery what causes them and why I react to them. I will meet them as they come, and I will deal with them as they do. I have a target to work with, I have to start looking at the hard thing a bit more, so I can come to terms with what it means to say goodbye to the heart that has carried me when so many said it couldn’t. I have been given the gift of time to grieve and thank my spiteful, spitfire of a friend while it still beats in my chest. Perhaps, like most grief it won’t be something I completely get over, but something that dulls as time passes and acceptance sets in. 

Getting My Sh!t Together.

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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.