Mid-Morning Musings: Processing a New(ish) Diagnosis & Moving Forward

In mid-June, I had briefly chatted about how I was going to be undergoing a heart procedure to treat one of my illnesses, which would then have vastly improved my health. That procedure took place on June 25th and, unfortunately, it was not a success. Today, I wanted to provide y’all with a small update and sort of use this space as a sounding board while I process everything that has happened in the last couple of days.

The procedure that I was supposed to have done was one where the doctors would insert a camera into my heart so they could examine the portion of my heart that was causing me to have what is essentially an irregular heartbeat. Then, they were supposed to insert a balloon into that section, expand the balloon, send an electric shock through it, and basically “kill” that part of my heart to prevent the irregular heartbeats. However, once they got the camera in my heart, they discovered that I have a congenital heart defect—a hole in my heart, to be specific—and it is much worse than imagined because the hole is rather large. My doctors are stunned that I am still alive given the sheer size of this thing.

Suffice to say, they couldn’t move forward with the procedure because to do so would create some severe complications and the risk of me not surviving it had increased vastly. So… my treatment did not go as planned. I’m still on recovery for two weeks because the incisions and insertion of cameras and things did their painful gig and need time to properly heal. But, now that this procedure was inconclusive, what does that mean for my future?

I have to have open heart surgery to treat the hole in my heart. That is the only way to treat this defect, particularly since it’s so fricking big. According to my cardio-surgeons, I have had this opening since birth. It was supposed to close on its own as I got older because when I was a baby it was a tiny thing. But that didn’t happen. It kept growing, and since it is positioned awkwardly within my heart, it wasn’t showing up on any of the numerous tests that my doctors ran prior to setting me up with this recent procedure. If I didn’t do the procedure, I actually may never have gotten diagnosed, or the diagnosis would have arrived way too late. So, in that sense, even though shit hit the fucking fan, in a way it was a blessing in disguise.

I’m not going to lie. I am freaking out. Open heart surgery and heart transplant surgeries are something that I have always been against. My brother died from a failed heart transplant surgery. This entire ordeal has been so incredibly triggering for me on a deeply personal and emotional level.  On top of that, due to COVID, I was completely alone in the hospital when all of this went down. My parents dropped me off and then had to leave immediately. I underwent the procedure alone. I woke up alone. I learned that I have what can amount to a semi-terminal illness alone. My brother died alone, which has exasperated everything further.

If I could place all of my current thoughts and feelings on the table right now, there would be three neat piles. The first pile would be of validation and relief. I have suspected that I’ve had this illness for years, but no one ever believed me. I did a lot of research on my own when my symptoms first began manifesting many years ago, and my loved ones thought I was being a paranoid hypochondriac. At some point, I started to believe that maybe they were right, and my instincts were grotesquely wrong. But that’s not what happened. My instincts weren’t wrong at all, but right on the fucking money. This goes to show us that sometimes what we feel with regard to our bodies is right and ignoring those gut instincts and vibes is probably a big mistake. So, I’m fucking glad that I wasn’t just some paranoid freak. I was right and it’s… remarkably freeing. Granted, I wish I could’ve have been right about something far less dangerous.

Then there is the second pile where I’m also really pissed off.  Maybe if people stood by me and supported me more back then, and helped fight to prove something was wrong rather than writing me off as a crazy idiot then I wouldn’t have to deal with all of this shit right this second when I have so many things I’m trying to accomplish, but may not be able to complete now thanks to this condition. Like finishing my fucking college degree or trying to become published as an author. I am so mad and feel like I can’t catch a goddamn break, and my mental health is really starting to take a toll, y’all.

Which brings me to the third pile: fear. I don’t want to die. I am not ready to die and I’m fucking terrified I will.

Open heart surgery is no fucking joke. They are going to saw open my ribcage, put me on a machine and then cut into my heart to repair it. It’s one of the riskiest surgeries that  person can undergo and I’m only 32! I joke around about how old I feel with my achy bones and things, but I’m not really that old at all. Aside from my heart defect and my body weight, I am incredibly healthy otherwise (which did blow my mind a bit). My brother died when he was 30. He accomplished a helluva lot more in his life than I ever did (so far), but it doesn’t mean that I don’t want the opportunity to at least try.

I want to publish a book.

I want to co-write a comic.

I want to get a college degree, even if all I can do is a Bachelor’s and nothing more.

I want to get my JLPT certification.

I want to buy my first home in a city I don’t hate.

I want to travel to a different country.

I want to meet some authors I admire one day.

I want to help build a sanctuary for homeless kitties.

I want to complete my transition from my assigned gender to my actual gender.

I want BiblioNyan to hit 2,000 followers one day, and The Djinn Reader to hit 1,000.

I want to watch my best friend open her first restaurant or finish making her first film.

I don’t want my last moment to be of me lying on a silver slab in the hospital, completely alone with my chest ripped apart like a fucking xenomorph baby just birthed itself from my decaying flesh. Although… it would be low-key cool if it were a xenomorph and not heart disease.

I want to live. I want to be alive. But I am fucking scared to death (bad word choice).

So, what’s going to happen now? Well, I get to meet with heart specialists to figure out how to proceed with getting treatment, which means setting up the open heart surgery gig. If I successfully survive the surgery, then I will have a minimum of three to four months of recovery. The average and more realistic recovery time is approximately six months to a year. During this time, there is little that I shall be able to do since I’ll be out of commission for the most part. If I don’t successfully survive, well, then I’ll be dead.

Gloomy, I know.

So, that’s the update.

Since my plans for getting a regular job have also been indefinitely postponed with the severity of my condition (was originally going to work at my college’s libs), I will be setting up a Patreon in the coming month so I can have a way to supplement my income. Trying to stay on top of bills and costs of medication while dealing with surgeries of this calibre are going to be tough, and I’m going to need all the support I can. 

Anyway, that’s pretty much all that I have to say. I’ll definitely keep y’all updated as things progress and I’m sure I’m going to have days when I’m just going to want to sit down and cry or vent or just… maybe even give up. Even though the urge will be there, I promise I won’t stop fighting, no matter how daunting or frightening the circumstances.

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35 thoughts on “Mid-Morning Musings: Processing a New(ish) Diagnosis & Moving Forward

  1. The truth is that there are people who really do exaggerate just to get more attention or special treatment. That makes it easier to write the real thing off as just another exaggerator than to do the due diligence of tracking everything down. People gravitate towards the lazy and the simple. They don’t even realize that’s what they are doing. They think they are being “rational.”

    My daughter had a similar experience. She had recurring crippling migraines for about ten years and nobody would do anything but prescribe mild pain killers and suggest dietary changes. Finally she got a doctor who took her seriously and did a series of Botox injections combined with specific migraine medications and she has relief.

    Something similar happened to me. I had severe arthritis in my knees. It was years before I found a doctor who recommended cortisone injections. Now I can walk much farther without pain. Cortisone injection are standard for bad knees but because I could still walk and cope with the pain they wrote me off as a malingerer.

    I cannot imagine how they could have listened to your heart and done EKGs and NOT known something was going on unless they’d already written off “congenital heart defect” as a possibility by assumption. One a doctor says, “This isn’t it.” the people who follow on take it as a given and will only look elsewhere.

    Assumptions always make for bad science. You can interpret data to support ANY hypothesis by simply changing assumptions.

    • It’s SO frustrating when that happens. Most of us have a good sense of our own bodies and can tell when something is wrong. I sometimes blows my mind that such a large number of doctors don’t actually listen to what their patients are telling them versus what they want to believe or perceive based on test results. I only had one doctor who honestly thought I had serious conditions (it was when my first episode happened). But when I got referred to another cardiologist, someone who was more renown I suppose, he told me that the original doctor was wrong and overreacting. That someone of my age and health couldn’t possibly have a congenital defect. Turned out the first doctor was right the whole time. This also shows me that “best doctor in town” doesn’t always mean that they actually know what they’re talking about more often than not.

      • I find it rather insulting when a doctor disrespects me

        I once had some bad chest pains so I went to the doctor. He assured me the symptoms were not indicative of heat disease. I was relieved and asked what the symptoms were. He refused to tell me, saying that if he did, next time I’d say those were my symptoms.

        What a pompous asshole!

        • Yikes, sometimes I wonder why these sorts of individuals even became doctors. It’s like if you don’t care about the patients and healing them then what’s the point?

  2. I’m really impressed with how honestly you’re facing this. That takes courage.

    You’re in my prayers.

    And I’m looking forward to cheering you on as you achieve your goals.

    • Thanks so much! I’ll admit that a part of me wants to go into denial because it’s easier to deal with that way, but it won’t help me heal or get better or anything else good. So, I just try to admit what’s happening and do whatever I can to move forward, even though it’s exhausting and daunting as hell.

      • “So, I just try to admit what’s happening and do whatever I can to move forward, even though it’s exhausting and daunting as hell.”

        That’s another way of saying “brave.”

    • Yeah, having the right diagnosis is a huge help… I hope lol. The way they described the position of the opening, I’m not surprised it didn’t show up on standard tests. It’s pretty awkward. But hopefully once it’s treated, I’ll be good to go for a long time.

  3. Again, a lot of people have said many things I’d like to say. It absolutely blows that your diagnosis got worse due to people not believing you in the first place. I’m glad to know that they did correct your diagnosis and that you have survived through this surgery.

    I’ll be keeping you in my thoughts, and know that I will support you as I can. Take the time you need for yourself.

    • Thanks so much, dude. I’m super grateful for you. I do wish that doctors would try to give more credit to patients when they say they know something is wrong, but a lot of the time that doesn’t happen, at least until it’s too late. I am happy that this is getting treated and fixed (hopefully) before it got to a place that I couldn’t come back from. My hope is that once this is all over, I won’t have to go anywhere near a hospital for a long time lol.

      • You’re very welcome. I really wish the same thing. I keep hearing more and more about this sort of stuff. At least in your case, it’s being worked on so it’ll be fixed!! Once this is all over, I hope the same that you don’t have to be anywhere near a hospital for a good long time. (fingers crossed!)

  4. I’m so sorry that your surgery didn’t go as planned, but I am glad that at least you have peace of mind in regards to all your symptoms and that they did catch it before thins got worse. Please take care of yourself both physically and mentally. It’s also awful that this is happening during the pandemic, and I hope you stay safe from that as well. Best wishes to you.

    • Thanks, Krystallina. I feel like the pandemic just makes the stress worse because I’m so immunocompromised. I had to take COVID test before the procedure and luckily it was negative. Gonna kepe my fingers crossed it stays that way through the rest of this gig.

  5. That’s very unfortunate to hear, you take the time you need and I will keep you in my thoughts. I’ve appreciated your support and friendship, so please let me know if there’s anything I can do for you.

  6. How horrible to be all alone in the hospital. Believe me that I was with you in spirit, holding you in my arms and pouring healing white light into your body. I know you are stronger than you can imagine. Look at all you have gone through and survived and only gotten stronger. You will survive, dear one, I know that you will. You are never truly alone. Look at the people right here who are with you, and I know you have even more dear ones at your side. No doubt your brother is watching over you, protecting and supporting you and affirming you are not going to join him on the other side YET. You have important things to do. Blessedbe.

    • Thank you so, so much, Foovay. I like to think that he is watching over me and probably yelling loudly that if I give up, he’ll kick my butt haha. I miss him so much. But having a good support system with you and everyone else has been a humongous help, and helps me want to keep on trudging through to the (hopefully) victorious end of this gig.

      • I know when hubby has gone through some tough times, it’s the online community who has stood by me and made me feel like someone cares. And I know for a fact prayers etc. can work miracles. Seen it. Lived it.

  7. It pains me to hear about what you’re going through. Please hang in there! You’re a survivor of 32 years already, and you definitely have it in you to get through this too. Thinking of you and doing what I can.

    • Thank you so much, Moya! It blows my mind sometimes when I think about how old I am. I definitely feel a lot older sometimes…

  8. Although i am too poor to donate right now, i have to say that union on all support to believe that your condition can get better is highly possible.

    One of my cousins (17 years old) has had problems with mental-health and it got worse when he was Positive with the recent Coronavirus..

    Things just went downhill from there until they had to inevitably hang his life on a ventilator.. He wasnt breathing anymore, but instead the machine did it for him…

    He legit almost died when his body reacted one night and woke up all sore from the long tubes that where connected to his mouth and went all the way down his neck as he started to vomit blood all over the floor because of the injuries he had deep within his lungs…

    Our family prayed and prayed and we had faith that he could get better and escape death to see the light of another day..

    Luckily one month later his condition got better and hes now currently out of the hospital undergoing recovery and therapy since his arms and legs dont work as much since he was hold still for a long time..

    He did say some interesting things after he got out though…

    He said that when he was near death after they had reconnected him when his body reacted so rapidly and he was losing blood, he said that he saw a strong light with a bright presence of what seems to be an old lady with gray hair… Behind her was a bunch of shadows and silhoutes which he claims that it was us standing by his side believing in him that he can get better…

    The funniest part about all of this is that he was always in the dark and cold hospital all alone without anyone besides him…

    Though he left alone, he did feel like a lot of people were there supporting him till the end..

    And about the old lady with grey hair, i belive that it is the spirit of my old aunt who passed away around the same time she had to be connected to a ventilator being Positive with the coronavirus as well… Unfortunately, she didnt make it.

    But after hearing all of this… I can definetely say that you are not alone despite there being a lot of people supporting you till the very end. I for one will definetely pray for your success in that surgery and for you to get better so that you can reach your goals!

    Just remember to not give up and always think about those who truly support you!

    • I’m so glad your cousin is okay. That sounds like just a traumatic experience, to be honest. I’m glad that he also had people supporting him, even though they couldn’t be with him during all of that.

      I think that’s the part that bothers me the most, being totally alone in hospital for one of the most risky surgeries a person can undergo. I know they (family and friends) will be waiting by the phone for good news and things, but it still kind of sucks. I’m also not the greatest at staying in hospitals for extended periods of time, and I think I’ll have to stay at one for about a week or so, depending on recovery and complications etc., once the surgery is over. I hope that my family/friends will at least be able to visit me, even with social distancing.

      Thanks so much for sharing the story. I have my bad days where it’s hard to stay positive, but I’m going to try my hardest and keep fighting. I want to live and I think that’s a good motivator to keep going forward.

  9. Having a somewhat similar condition myself, (I got a weak heart and a bit of a time bomb..due to my muscles weakening or giving me trouble) I can only say hang in there! Keep fighting for those dreams as those are what will give you strength to pull trough.

    While in your case you are dependent on others and even some luck , I want to share with you that I really do belief that positive thoughts generate positive results! Believe you will publish that book, believe you will travel abroad. I might be to poor to offer you financial support but I will believe along side of you! If there is such a thing as Karma.. we will unite everyone.. like Foovay for example as well who I know holds you very dear as well and bend destiny as best as we can! You can pull trough!

    While I might not visit this blog as often as I should I know so much people out there speak so highly of you, so I can at least tell you this, for the days to come don’t be afraid to share that fear.. if You feel scared and alone do not be afraid to reach out to the people here! People will be very willing to help.. maybe with a talk, maybe with support, don’t think you should not bother people with these issues.. they are real and you need to be as positive as possible when you go into these things..so if you need anyone here! Just ask!

    From my experience with heart issues I learned we can not pull trough this alone and while it may seem we may ask a lot of other people, they often think we ask very little so don’t lay awake alone at night. As somewhat of an outsider I can guarantee you there is a lot of love for you out here in the community and never be afraid to use that love when you need it!

    Stay strong!

    • Thanks, Pinkie. My friends are actually making a giant board for me with pictures and cut-outs of things I want to accomplish, so I have something to look at when I start to feel overwhelmed or disheartened. I’m going to try and stay positive and hope I’ll be able to accomplish at least some of those goals I’ve got.

      I used to be really scared to talk about my mental and physical health, but then I realised that I was someone looking for familiar and similar voices to relate to help me through the tough times, and that inspired me to open up about my health. I’m actually a pretty timid person in real life, so it has always been challenging for me to reach out to others when I need help, even just emotional/mental help. But I’m trying to get better about it because having support during a crisis is a lot more inspiring than trying to face it alone, so I’ll definitely reach out if/when I need to. ♥

      Thank you for reaching out and for sharing such motivational words and advice. I’m very appreciative, friend. ♥

      • Glad to hear you stand in it this way!
        That is the strongest attitude you can have!
        It’s okay to be scared, it’s okay to be anxious! Just don’t try to face it alone you will get overwhelmed.

        I tried to do that for a while myself and I ended up with a fear that even overshadowed the fear of dying for me. A feeling of not mattering, being a candle in the wind that can be blown out but that people should not bother with to keep safe. If you have the people to keep your flame alit use them.

        While I can not say anything for certain on how long I will be out here in the world I made my resolve that no matter what happens, I reach out, so even if I go out and reach that game over screen people will notice! That way I at least know that even if I might be home alone should things happen I never truly die alone.

        Keep those goals in mind and once you finish them make sure you have some more! Keep that inner fire burning and good things are more inclined to come your way.

        • I do worry about that sometimes, if/when I die if I’ll leave anything significant behind or if I’ll just be forgotten dust in the wind. It’s a scary thought to contemplate.

  10. Hi, I just got sent this through Scott and I want to say that i am incredibly sorry about your heart problem.
    You sound strong and I want you to know that we are all here for you till the very end!
    Have faith, be strong and (like Scott said) never give up!
    We all hope for the best and hope you survive this surgery (We will try our best to support you as much as we can)!!
    Love, the aniblogging community!

    • Thank you so much! Having the emotional support is going to go a long way during this battle for me, so I’m supremely grateful for it. This community has been extraordinary and I’m blessed to be a part of it. ♥

  11. Oh no, I’m so sorry ☹️. The heart is no joke and I’ve lost a number of important people in my life due to heart problems. My older brother passing away a while ago is one of them.

    Please never give up. I know that we know each other on an online capacity, but I love having you on here, reading you stuff, and everything else. Going to do what I can to support you.

    • I’m sorry to hear about your brother. That kind of loss is never an easy thing.

      I promise I won’t give up. It’s just all so very exhausting sometimes and I’m worried it’ll never get better/easier. But that’s probably just me being pessimistic since I’m just overwhelmed with various emotions right now…

      Thanks for always supporting me and this blogspace, Scott. I know we don’t chat much, mostly because I’m actually a rather shy person, but it means so much to me. You’re one of my favourite bloggers and someone I admire a great deal, so your words really mean a lot to me. ♥

      • Yes, it’s happened a while ago and it still stings and everything.

        Yes, keep going. Please never love hope.

        You’re welcome. And don’t worry about chatting too much. I am super shy as well. I talk a lot better through typing then actual dialogue a lot. You are one of my favorite as well.

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