Long QT Syndrome

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Long QT Syndrome
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    Community Voices


    Well the job in Antarctica didn't pan out.
    Medical kept wanting more and more
    information on my gastroparesis, and then
    I found out that the COVID vaccine was
    mandatory, so I had to withdraw.

    Now I've found out that my full time
    position is in jeopardy because of the
    mandate as well. I have until December 8th
    to be vaccinated or I'll be terminated with
    cause. I'm so stressed out and worried
    about losing my job. I do NOT want this
    vaccine. Not right now. I don't feel the
    research has been done enough to know
    how this will affect people five, ten years
    down the road. It was rolled out way too
    fast and approved way too fast. I have too
    many health issues; I don't need more. Also,
    I've had COVID. I'm fine. I have the antibodies. I shouldn't be forced out o get
    vaccinated. And I sure as hell shouldn't lose
    my job over it.

    Anyway, I recently had genetic testing
    done. Found out I'm a carrier for Alport
    syndrome and that I'm at a higher risk of
    developing Long QT syndrome. I also
    received a clinical diagnosis for hEDS.

    I started a second job (PT weekends, so I'm
    working seven days a week) with the
    Medical Examiner's Office about two
    months ago, and it's awesome. I very much
    enjoy it. Luckily this vaccine mandate isn't
    affecting that job, as they have less than
    100 employees. So even though I'm
    screwed with my FT job, I'll still (hopefully)
    have my PT job. #Update #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #Gastroparesis #Anxiety #CheckInWithMe

    6 people are talking about this
    Community Voices
    Community Voices

    NJ Tube Fears

    Hey guys :)

    I have moderate-to-severe intestinal dysmotility, and mild Gastroparesis. After months of weight loss and pain and discomfort, my team has decided the time has come for a feeding tube to be placed. I'll also be starting a motility med, but that may make my heart condition (Long QT Syndrome) worse so I'll be in the CICU for a bit as well while we watch that. I'm also apparently an "ideal candidate" for refeeding syndrome, so watching that as well. The idea is that the med combined with pre-digested food will be something my body can handle, and that I'll get off the tube within a few months and go back to my liquid diet sans feeding tube.

    Frankly, I'm scared. Terrified. I've never had a feeding tube before, never had a central line or anything like that, and I have no idea what to expect. I know it'll suck during placement and the first few days, but according to the internet the discomfort will pass relatively quickly. I'm much more concerned with the public's perceptions. As a 15-year-old ambulatory wheelchair user, I'm used to stares, but I know they'll only get worse when I have a tube clearly pasted on my face. I'm also worried about feeding in public, flushing, delivering meds, everything that's going to be a new part of my life. I have an invisible illness, and I'd like it to remain that way. This changes that drastically.

    I'm at the point that I need to be admitted now. However, my hospital is currently overrun and having a Flu outbreak, so I got deferred for a few days. I go in on December 30th for placement. It's better than Christmas inpatient anyways.

    I guess I'm posting here in the hopes that someone else will get it. I'm scared, and I don't know what to expect. If anyone has any tips/advice they'd be much appreciated.

    #EhlersDanlosSyndrome  #PosturalOrthostaticTachycardiaSyndrome  #dysmotility  #ChronicIllness  #ChronicIllnessEDS  #Fear  #njtube   #tubie   #InvisibleDisability   #InvisibleIllness   #LongQTsyndrome

    11 people are talking about this
    Community Voices

    Does anyone else feel major imposter syndrome when they're actually given the care they've been fighting for?

    I'm dismissed and trivialized so often by doctors that when one actually takes me seriously and helps me get a procedure or medication I need, I am immediately terrified that I'm not "sick" enough to need it, that I somehow over-exaggerated my suffering, or maybe I am actually somehow faking and I'm taking resources from people who need them...

    Logically, I know I'm being honest. I know I need this. But I have to fight so hard to be taken seriously that it makes the stakes feel incredibly high when it comes to accepting the care I've won. It's a lot of pressure.

    Does anyone else feel like that sometimes? How do you deal with it, and just let yourself be?

    #ChronicIllness #LongQTsyndrome #Fibromyalgia #ChronicFatigue #Fainting #ChronicPain

    16 people are talking about this
    Community Voices
    Community Voices

    Despite my Zopiclone, I can’t sleep. I wrote this poem after seeing the monthly poetry inspo post... I’ve never shared poetry but I’m exhausted and figure why not? So here it goes:

    In the mirror when I smile
    With make up tactically hiding the fatigue
    In the outfit that I style
    With my walking stick and ankle brace,
    I find strength.

    In my soft flannel pajamas
    To not hurt all my bruises
    And my soft and silky eye mask
    Because the soothing darkness never loses,
    I find strength.

    In the message that I read
    Of friends planning a pizza day
    Keeps my anxiety at heed
    And I can still come as myself,
    I find strength.

    My dog who’ll give me cuddles
    Exactly where my body’s sore
    She’ll hug me while I’m napping
    And let me rest some more,
    I find strength.

    In my mom who holds me when I walk
    And my dad who carries me up the stairs
    In my brother who makes me tea while we talk
    And in my friends who slow their pace for me,
    I find strength.

    In the things I have so far achieved
    That even I would never have believed
    In the things my fellow warriors fight to do
    Despite conditions and battles never relieved,
    I find strength.

    In the things that I hope for
    Like getting back on my horse
    In the things that we pray for
    Like a day that’s not worse,
    I find strength.

    For we’ve now come so far
    We’ve learnt to keep going
    To live our best lives like we never imagined
    And hang onto life in the wind that keeps blowing,
    I find strength.

    #Fibromyalgia #ChronicIllness #ChronicMigraines #ChronicPain #ChronicFatigueSyndrome #Scoliosis #LongQTsyndrome #IrritableBowelSyndromeIBS #Bronchiectasis #SupraventricularTachycardia #GeneralizedAnxietyDisorder

    1 person is talking about this
    Community Voices

    Living With Long QT Syndrome After Near-Death Experience

    I have a life-threatening heart condition called long QT syndrome (LQTS), also known as “sudden death syndrome,” and have an automated implantable cardioverter-defibrillator (AICD), which is a small electronic device implanted in the chest, just beneath the muscle below the collarbone. Its main function is to prevent sudden death from cardiac arrest due to life-threatening abnormally fast heart rhythms. LQTS is considered to be a rare condition due to the fact that it affects less than 200,000 people each year. Long QT syndrome can be inherited or caused by a medication or condition. It often goes undiagnosed or is misdiagnosed as a seizure disorder, such as epilepsy. People with this condition may not develop symptoms for a long time. When symptoms do occur, they can be severe, and may include sudden fainting, seizures or even sudden death.   Growing up I was always very active in sports. Everything under the sun, really. I was a happy and healthy child who enjoyed spending time with her friends. Little did I know that at age 13 my life was going to change and I would end up putting my family and friends through some very scary situations. One night out of nowhere, I was in the shower when I blacked out. I called out for my parents. I couldn’t remember calling for them but I heard them talking to me asking what was wrong. I could hear them but everything was black. I couldn’t see a thing for several minutes. When my sight came back I was sitting in the tub wrapped in a towel with my mom holding me. Unfortunately this instant was the most mild and least scary of all my episodes. Over the next four years I would have several frightening episodes that presented as seizures. We sought out a specialist who was unable to find a cause for the seizures after many tests. The best the specialist could do for me was to prescribe me a medication to help prevent the seizures called Tegretol. I explained that before each seizure my heart would race, I would feel dizzy as if the room was spinning, then would lose consciousness. When I would come to I would be surrounded by my friends and told I had a seizure. I would feel physically exhausted as if I had run a marathon and most times I would have a painful headache as I was waking up. None of this information helped in determining what was going on until a few years later. When I was 19 I found out I was pregnant with my first child and the medication I was on for my seizures was very dangerous to take while pregnant. I knew I needed to stop taking them so it wouldn’t cause any harm to my baby, so I went to see my doctor to be prescribed something safer. Weeks after switching my medication I had a seizure. I was at a movie and someone happened to see it happening and called 911. By the time the ambulance arrived I had come out of it but something just didn’t feel right. I didn’t just feel exhausted, I felt like I was going to have another seizure which had never happened before. I told the EMT my history on the way to the hospital. After arriving at the hospital I told the nurse the same thing – something wasn’t right and I just knew something was going to happen. I was assured I was in good hands and she would be in shortly to check on me. That was the last thing I remember. From what I was told after the nurse walked out of my room, I went into cardiac arrest and my heart stopped. They called a Code Blue and it took several attempts for them to get my heart beating and bring me back. When I came to I was told I had not been having seizures, I was going into cardiac arrest and coming out of it on my own and they were just appearing as similar to a seizure which is why after all those tests they couldn’t find a cause. Once we learned this information and I was diagnosed with long QT syndrome, I was scheduled for surgery to have my AICD implanted two days later. My life was changing in so many ways all at once. Not only was I having a baby but I had survived death and was given this frightening diagnosis. After my surgery I was in the ICU for eight days recovering. Physical recovery, that is – it would take me years to fully recover emotionally and mentally from what had happened. Life with this condition has had its challenges. For a long time I was extremely self conscious of my AICD “box” that protruded out of my chest and the horrendous scar that went with it. I wouldn’t wear thin strap tank tops or strapless tank tops in fear of people seeing my “box.” I was ashamed of it and was so angry with my surgeon for not concealing it better. Little did I know it was actually very common for people with pacemakers and/or AICDs to have their box defined on their chest. It took me a long time to accept this thing was a part of me forever. Eventually, after explaining to the hundredth person who asked what my scar was for and what the “box” was, someone said to me, “Wow! What an amazing story! You are so strong and brave. I bet seeing that every day reminds you how tough you are – you’re still here!” and boy, did that change my perspective about everything I had been through and the way I looked at my “battle wounds.” I suddenly felt proud of it, not ashamed or self-conscious. I was happy to tell my story with pride. I’m a survivor and I fought for this life I now have. It goes without saying that having a near-death experience can change a person. I can honestly say mine has changed me in good and not so good ways. I struggled for a while with depression after my first son was born. Not in the same way as postpartum depression, but in fear that something would happen and I may not survive it this time. I started to have anxiety and that became a daily struggle. I spoke to my doctor about what I was going through and he said it’s very common to experience depression and anxiety with my condition and what I’ve been through. I started taking an antidepressant which did help for a short amount of time, but soon I stopped feeling like myself. I felt numb. So I decided to stop taking it and find other ways to help without medicating myself. I was on enough medication thanks to my heart condition – I didn’t want to rely on that to make me happy, too. Aside from the emotional and mental challenges, I have had a few occasions that have caused concern and have required medication changes due to the fact that I lost consciousness and my heart rate went up to 333 beats per minute, and it all happened so quickly that the pacemaker didn’t have time to react. I was afraid of something happening while I was alone with my kids or in the car, so they increased my medication. It’s scary to think that at any moment my heart rate can jump up so high and my medicine and AICD may not be able to save me. There is also a small chance I may have passed this down to my kids so we have to have them checked for any signs or symptoms and prevent them from experiencing what I did. To live with this every day is just a constant reminder how fragile life really is and helps me cherish every moment I have with my kids and family. Over the years I’ve found ways to cope with my anxiety and a few factors in helping have been exercise and finding ways to relax like spending time with friends, family and my kids, an occasional glass of wine, taking pictures, etc. I also found that surrounding myself with positivity and living the healthiest life I can made a huge difference. Now I just take things day by day, remembering that every day is a gift. We want to hear your story. Become a Mighty contributor here.

    Alexis Holmgren

    The Mixed Emotions I Had Seeing Long QT Syndrome on 'Bones'

    I wouldn’t exactly call myself a superfan of the TV show “Bones,” but I am pretty familiar with it. The episode in question titled “The Carrot in the Kudzu” just so happened to a air on March 24, 2014, exactly one week after my aunt survived a sudden cardiac arrest due to long QT syndrome (a rare genetic heart condition already diagnosed in both my mom and I). Three years later, I still remember exactly where I was when the episode aired. I was with my mom, resting, and she happened to have the TV on in the background. I wasn’t really paying attention to what was on. It seemed to be nothing more than background noise that faded in and out of my awareness. Then, I heard one of my favorite characters on TV, Dr. Temperance “Bones” Brennan, say the words “… a rare heart condition called long QT Syndrome.” I immediately sat up in shock. I couldn’t believe what I had heard. Did a popular TV show really just mention the rare heart condition that had changed my family’s lives forever by name? I don’t think I’ve ever gotten up so fast in my life. I had to see this for myself. The case begins when the remains of a young, seemingly healthy man are found on the side of a road. Despite studying the remains extensively for days, they are unable to determine an immediate cause of death. Later, it is discovered that rib fractures observed on the body likely resulted from the man receiving chest compressions performed during CPR several months before his death. I started wondering what direction they were taking with CPR having been performed on a seemingly young and “healthy” man whose heart seemed structurally normal. Could the show really be going where I think it is? They are also able to determine that the man lost consciousness immediately before death despite not being able to find anything that would explain why he lost consciousness. It is at this time that they begin to suspect he had a heart condition of some sort. By this point, alarm bells are going off full force in my mind that the man probably had long QT or another sudden arrhythmia death syndrome (SADS) condition. Upon obtaining his medical records, it is discovered that the man had indeed been diagnosed with long QT syndrome two years before his death and that he likely died because he stopped taking his beta blockers, which are generally the primary treatment for long QT, due to unwanted side effects. In the end, it is revealed that the victim died when a car drove up behind him and honked its horn, sending him into sudden cardiac arrest and eventually causing his death. My first reaction was to be extremely excited that such a popular show had taken on depicting my rare condition. The condition that for the eight months I had been diagnosed and the year and a half since I had almost lost my mom to it, I constantly heard “I’ve never heard of that” when having to explain it to people. With a condition like long QT that generally affects otherwise healthy looking people, it is crucial to get awareness out there. If my mom or I could have had our symptoms of blackouts, seizures, and near drownings recognized before her sudden cardiac arrests, it is possible that they could have been prevented. Awareness saves lives. So, I was grateful to see long QT put out there to such a large audience who now might be able to recognize the condition if they see it again in the future.   And then, it happened. The feelings of joy and gratefulness I had felt up until this point morphed into sadness and a little bit of anger when the quote that I remember word for word to this day was spoken. After Bones explains long QT fairly well, Agent Booth responds by saying, “That’s a hell of a way to go through life. I’m surprised he lasted as long as he did.” Although I agree that long QT is an absolutely terrible condition that I wouldn’t wish on anyone, as long as the condition is well-controlled and stable, for the most part, we live pretty normal lives. We don’t sit around waiting for death to come. We go out there and live our lives the best we can (with extra precautions, of course) because I don’t just want to survive day-to-day. I want to thrive. Long QT didn’t stop me from flying to the Yukon only eight days after having surgery to insert my implanted loop recorder (ILR) when I was 14. Long QT didn’t stop me from laying on the glass floor of the CN Tower at 16. Even though there are things that I cannot do, there is much more still that I can. I may have long QT, but long QT certainly does not have me. We want to hear your story. Become a Mighty contributor here . Lead photo courtesy of the Bones Facebook page