When I was binge watching season 4 of The Chosen, I was feeling super connected to Jesus in these episodes. A common theme was popping up, and I soon realized why I was focusing on that, and I too dread what is to come.
My dread is a very different reason than Jesus’ dread in ways and not so different in others but nonetheless, that is the feeling that I am working really hard on leaving in the past, but I am also proud of my body for acknowledging these feelings.
To set the background, if you have not read my book, I was born with CHD otherwise known as Congenital Heart Defects. It can also be referred to as Congenital Heart Disease, which either can be proper depending on the context. You are born with defects that can also lead to disease only derived from the defects, but when I say CHD, I am talking about defects, not disease.
I have a super long list of defects that have been repaired during the surgeries I’ve had in the past, but unfortunately, these repairs are temporary fixes. I found out through a lot of research years ago, that our kind of surgeries are considered palliative procedures. It’s because these procedures aren’t a one and done. For me, it’s “here’s a new valve and it might last 5 to 10 years until your symptoms are bad enough that you need a new one”. So you enter a period of surgery, feeling “normal”, entering the waiting period and then more surgery. It is a constant loop. I am currently in the beggining stages entering the waiting period. When will my next one be? Only God knows.
Now don’t get me wrong, because I am so thankful for the technological increases that many CHDers before me did not get to enjoy. A lot of my first fixes continue to be fixed, such as the holes in my heart. They didn’t need re-patched, but my main cause for surgeries now are due to the pulmonary conduit that replaces my still intact and very hypoplastic and stenosed pulmonary artery. They left it because it sits on top of my aorta, and they didn’t want to risk nicking my aorta to remove it. Don’t blame them.
In fact they’ve done a lot of studies on those born between 1990 and 1993. I was born in 1991, and they found that compared to the previous decades, 81.4% of patients with critical CHD’s are now able to survive to young adulthood. I would think that would be 18, but they determine it to be the young age of 35. I have a few years to go, and I’m almost there! So it roughly equates to 8 out of 10 people with cCHD will live to be 35. I used to think that those statistics were just a bunch of numbers until I was pregnant and so were 4 other friends and I was the one that had a miscarriage, and the fact that I have seen too many deaths to count in our zipper sisters group online. They’re mostly in their mid to late 30s, early 40s. They are ones like me that haven’t had many surgeries, aren’t on meds. They don’t seem to be super sick, until they are. They have their next surgery and before long, something happens and there is nothing left for the doctors to do.
I feel like I’m approaching a huge mountain that I must climb, no if’s and’s or but’s and there’s a chance I won’t make it to the other side, and I don’t have the option to not climb the mountain, because if I don’t I definitely will die. Inside I feel a since of urgency. To get things tidy around the house, to get things organized and “ready.”
Now I want to take a moment to stop to say, that I am not afraid to die. I cannot wait to give Jesus a hug, and to see Heaven.
It’s more of the unknown, and how to prepare myself as much as possible and those around me, like my kids.
I’ve had 3 open heart surgeries, one at 6.5 weeks old, at 2.5 years old, and 14.5 years old, and I’ve had 3 heart caths. The first 2 were before my open hearts as diagnostic caths and the last one I had almost 12 years ago when I was 21.5. This last cath bought me time and allowed my valve to be replaced via cath, instead of open heart.
It was much needed, because my valve from my last open heart nearly stiffened up almost immediately after. Usually you have your post op check up, then a 3 month, 6 month and then you go back to annually. I never made it past the 6 month part, and for almost 7 years every 6 months I went for an echo and wondered, “is it time?”
By the time it was time, looking back at my medical records, I saw a lot of damage to my heart. They don’t tell you this prior to your surgery, but now that I know what to look for, I might get more straightforward answers this time around. The pressures in my heart indicated severe pulmonary hypertension and the right side of my heart was very huge. I noticed it took a full year before it was noted normal size after my valve had been replaced in my charts. Some numbers recorded now that are used for an indication of heart failure have decreased 9% in the last year, and I’m very close to borderline. I don’t like that.
I was told last year that my valve was at its peak, so it’s only a matter of time before I hear “it’s time.” So subconsciously knowing that it’s “at it’s peak” means that there’s no telling how fast the downward slope will be. Maybe it’s time now, or time in 2, 5 years. 8 would probably be a stretch. My valve will be 12 years old in September and the longest I’ve gone is 14 years. I also just feel more off, especially since slowing down this summer after the school year ended. I won’t be surprised if surgery is around the corner sooner than later. I was told I could make it to 35, before my next one, but does it mean I will feel good making it there? Only time will tell.
My last cath, I was one of the first at my hospital to get a melody valve, so I also had more rigorous testing before, during and after. I didn’t really fully realize that until years later. One of the things that was done during my cath was a medically induced stress test. My heart freaked out and stopped beating. For 3 separate times totaling 15 seconds my heart was stopped and not pumping. They did CPR, and when I woke up, I was in so much pain, I thought that the cath failed and they had converted to open heart. It took months before I could fully take a deep breath because my ribs hurt so bad. I didn’t think it was traumatic at the time, because it’s just part of heart surgery life, but reflecting on it, like yeah that was super scary, and they didn’t even want to tell me. So imagine coming out of heart surgery, your doctors not concerned about your chest pain and it was brushed off. Enter in some dread, and cue the trauma that takes decades to accept and acknowledge as such.
Side note: I think it’s also taken so long too, because I didn’t feel like what I went through was that bad. I totally did downplay it in my brain, and it was only through writing and reading my experience that my body and brain finally fully accepted it. My weakness and inability to acknowledge this was covered up by a façade of strength where I didn’t allow myself to stop and process. I just packed it up and moved on. Something that I do when I do through something very emotional. And seeing others experiences what I went though was definitely not that bad, on a scale of not bad to extremely bad, so you know its a mix of things at best, but I’m growing and working on it every day. Being limited in our humanness, we can only expect that.
Prior to the cath for almost 7 years I was in a waiting period. Between the ages of 15 and almost 22 in the back of my mind, I was always thinking, what will happen if I need to have surgery during this time or this? How will I recover being away from home? What if, what if what if?
I didn’t always show it on the outside, but it was always there. Knowing something major was coming, especially now that I was old enough to remember how terribly painful open heart was and knowing I had to do that again, but not knowing when… it was and is a very hard to describe mental torture.
It look months to mentally come out of the waiting period after my cath. After I made it back to annual visits, I think I relaxed a bit, but I still was skeptical. Once I moved to Michigan, my doctor told me something that really helped me relax. We were talking about the possibility of my heart being able to withstand pregnancy and he said, “Your heart is really complex on paper, but there is nothing, no surgery that I could do now to make it any better than it is. Your heart is just fine and I would argue that you could be treated like any other normal pregnant mom.”
I still was high-risk and was seen at the high-risk clinic, but he was right!
I was very blessed to be able to have 2 successful pregnancies with my valve and no heart damage. A blessing beyond imaginable. Sometimes pregnancy can throw you into heart failure, so I was so blessed.
So to do a little TL:DR my last surgery was almost 12 years ago, and combined with my past surgical traumas and just the pain from open heart in general, I am dreading the next one to come.
There’s really no other way to say it. If I want to keep living, I must. I’ve been mentally preparing, praying and have entered a silent and not talked about discernment, that will only be complete when the time comes and I have the full picture of what my heart looks like and what life looks like at that time.
My options are:
Have another heart cath, with 2 options from there. Either re-balloon my current melody if the valve is in good shape, but just narrowed. I don’t know that I would pick that because when they ballooned my current conduit, (that I will have for 19 years in February) it was so stiff that it broke and the covered stents are literally like a band-aid covering those holes and I just have to pray that they never dislodge and leak cos if they do, I feel like that’s a pretty instant death.
Maybe there is something I don’t know, but I would feel SOOOO much better having a new conduit. I just would.
The second cath option is just to add a new melody valve in on top of the current old valve, stents and melody. I would most likely be out of room after that. The other thing that I also must keep in mind is that my right side is closed off from the first two caths.
My last cath, went through the left side which is more risky, and if I have another cath through the left, that will probably close off that side too, which then will lead me to more risky entrance sites such as neck, wrist, between the ribs (OWCH) and through the liver (insert big cringe face). Being that I’m only in my 30s, at the current rate, I don’t want to close off too many sites too quickly.
The other option is my 4th open heart, replace the conduit (which I would REALLY love) and then would get a new valve. Now valve wise, a normal conduit valve is going to stiffen up more quickly than a melody, because the melody has the metal around it, but both valves lives are typically 5 to 10 years. I had one for 14, 6.5 and now almost 12.
I think there is also an argument of have open heart surgery now and recover while more young, vs older and then possibly be the last open heart and then just go with caths the rest of the time, although there is never a 100% guarantee of no more open hearts. If you get an infection its an automatic one.
If I had to choose, with my current knowledge, I would probably prefer a 4th open heart, with a fresh not broken and patched conduit and valve. If I can make it to 35, and then if my valve can last at least 10 years, that would mean I could have another cath at 45 or so if I make it that long, and that would buy me until my 50s etc.
Who knows what technology then would bring or if I will even be alive, but either way it’s a huge life changing decision that won’t be decided on lightly. I also have children and a family, and many other things to take into account this time.
What I dread is making that decision, not knowing if it’ll be the right choice. I dread the pain. Pain meds do not make me forget the pain or feel it. I feel it 100% it just makes me not care that I am, it makes me tolerate it. I also am allergic to NSAIDS, which I was not when I had my last open heart. I remember the pain, and my body remembers the pain even if my brain doesn’t from certain moments. It feels and anticipates it. I dread the recovery. I don’t sleep well on my back. I dread being put to sleep. I can’t describe how much I hate it. Just thinking about it makes my chest hurt.
But as much as I dread what is to come, I am so incredibly thankful to God and Him allowing me to be here so much longer than what doctors thought. He’s known this all along so maybe I should stop thinking of it as borrowed time, but it’s the only way I can acknowledge this gift that He has given me. We all are here on a finite amount of time not known to us, but for some it’s more at the front of our mind. Memento Mori.
When the time comes, I will don the gear, and one step at a time I will walk up the mountain, just like I’ve done before. I also know that I will be walking a long side Jesus and that His footsteps will be carrying me up the mountain when I can’t, and I know that whatever happens and whatever outcome will be, it is all His perfect will. Nothing is more perfect than His will.
Am I going to dread having to check those boxes of yes please take measures to resuscitate, yes please keep me on life support, and all the morbid questions? Am I going to dread the bandages and the immense pain? Yes I already 100% do. When I make it to the top of the mountain once more and see the view, it’ll all be worth it though. Every step, every hurdle. And in that moment the dread will turn into praise and joy and happiness. Relief, and more joy and praise.
I too dread what is to come… but only for a short amount of time because Jesus has felt my dread too, and in that I am not alone. I am free, the chains are no more.
As a note, I just want to say that by sharing these experiences, I hope that if there is someone experiencing something similar that they know they aren’t alone, or crazy and they are very loved. I truly believe in having someone trusted whether professional or not to be able to talk to and share your feelings, dreads and fears. Always remember that God is there ready and waiting to listen and to respond as well. God Bless and thanks for reading about my story. – Sarah