Tag: transplant

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.

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

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.

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. 

What I Mean When I Say I’m Fine.

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What I mean when I say I’m fine. 

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

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

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

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

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

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

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

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

Mom and Me

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My mom came to visit this weekend. Sometimes you just need to see your mama before you can really, truly feel better. I haven’t seen my mom since before the bomb was dropped. Up until now, the only person in my family I have seen is my sister who was with me when I was told about the need for transplant evaluation. We were both in such a state of shock that not a lot of processing was done until well after we parted ways. It was good to see my mom, and take a bit of time to process together. To just be together.

When I was little and I had chest pain, or other heart issues, my mom would come and sit beside me on my bed and lay one hand over the left side of my chest and close her eyes. I could feel my heart beating against her hand, and she would count the beats, feel my breaths. She has done this for years. There is absolutely nothing scientific about this way of determining pulse or respiration, but I know it isn’t just me that feels better when my mama’s hand is on my heart and we can feel it beat together. I know that my heart slows down in those quiet moments, and with her hand on me, my body relaxes, my breath comes a bit easier, my mom is there and I can feel my heartbeat, and I am okay.

There is not a moment of this road I have walked without her, and we have both stumbled here and there but I know that – this heart or the next, my mom will be right there beside me, counting the beats and easing my fears.

Love you mama.

Straightening My Cape

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Tomorrow it will be two weeks since the news that is heart transplant barreled in to my life and brain with less ceremony than a Mack truck. The first week I was pretty numb, I spent a few days laying in my bed, on my couch, and on the floor of various rooms of my apartment just kind of zoning out. I wasn’t even really thinking about the news. I wasn’t really thinking at all. If my mind was a house, nobody was home. When feelings did come back, they did not take their time. I haven’t had a lot of practice catching grand pianos falling from the sky, which may be why I didn’t handle ALL THE FEELINGS very well when they came, they weren’t light or easy to hold on to. They came fast, zero to sixty, and they couldn’t seem to take turns. Anger, and sadness teamed up and caused the bizarre, dark kind of amusement that makes people laugh at funerals. Then I would think I had pulled myself together only to find myself completely defeated again. I felt more than a little unhinged.

Once the feelings were back the flashbacks and panic attacks arrived as well. It should come as no surprise to anyone, that (largely due to my medical background) I have a long and well documented history of PTSD. The way I have explained it is this – over the last several years of trauma informed therapy I have moved my tolerance for triggers further and further from the edge, it takes larger or more frequent triggers to really cause much of a disturbance. Something may knock me back a little but I am not very close to the edge so my emotions generally stay in check. This doctors appointment punted me back to within striking distance of the edge, and every physical symptom I have started causing tremendous distress and panic.

One night, as I was falling asleep, something about how quickly I was drifting off scared me and I shot awake and into a panic attack because to me it felt too similar to how it feels to drift under anesthetic. I was terrified. I did not want to go to sleep, lose time, wake up confused and in pain. It took me an hour to use my tools and convince myself that I was safe and that I was just going to sleep for the night not having surgery. You would think this is obvious but you would be wrong, you cannot reason with a panicked brain.

Things are improving. I will be moving to twice a week therapy for a while to get these triggers under control. I am communicating my feelings to the best of my ability and giving myself both permission to feel things and permission to take some time off from my hyper-vigilance.

Soon I will have a heart cath, and meet with the Advanced Heart Failure and Transplant team. My team, my mom and sisters will be with me. I am so thankful to have them and that they have worked to understand as much as they can about how I process things and not rush or push. I have done really great changing some eating habits and watching my water intake and retention. There are good things among the hard stuff. I am back at work and for the most part I am able to do what I have always done with a few tweaks and accommodations here and there. I am thankful for the kindness and understanding of my friends and co-workers. I am going to do my best to keep posting here, both for myself and for all of you who wish to follow along. This could be a very long road. I’m straightening my cape. It doesn’t make me super human or anything, but man does it make an outfit pop!