Any other heart patients?

Discussion in 'Family Life - Stories, Pictures & Updates' started by mamawolf544, Jan 19, 2011.

  1. mamawolf544

    mamawolf544 Unbreakable Heart

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    This might be a little long, I'm sorry.

    My trouble's all began with an undiagnosed blood disorder, anticardiolipin antibody sydrome (lupus). I had been to the doctor and had blood test just 10 days prior and the doctor called and said my bloodwork was bad and never followed through. I had heard that for years, so it didn't bother me.

    April 25, 2002 I had 2 blood clots pass through my heart, run down my left arm and 1 blew out the end of my index finger and the other my middle finger. The doctors worked on those fingers for months so I didn't lose them to amputation. I had been working on weed eating the hot wire fences all day. Luckily ( I dont remember this) I had the EMT's there when I had 2 massive heart attacks. My DH is a very stubborn man, [​IMG] and he would not let them quit working on me. They brought me back 26 times to our knowledge, I have burn marks on my chest from the paddles. I was gone for 20 minutes once.

    I went to the hospital of course and they put in 2 stents, I found out later they put 2 stents in dead tissue. [​IMG] I think they were trying to shut my DH up. I was in a coma for 10 days, if I woke up I would be a vegetable. DH did not care.
    So one day I woke up, without a clue, scared my poor nurse to death when she came in my room. No rehab, I was home in 2 days.

    In July 2002 I had my first defibrillator put in. And I just wandered around with the little animals so to speak.
    New cardiologist in 2004 (I love him) and he immediatley had the defib removed and I had a CRT-D implanted which is a pacemake and defibrillator. Now I felt great. I should mention here, only 1/3 of my heart is alive, I cannot have a bypass, there is nothing to bypass it to.

    So these implants have batteries and since mine paces constantly they dont last as long for me. So a I had a new CRT-D implanted 2/09, but there was a problem and they had to bring another surgeon in and I had to have another surgery 2 days later. And since then I have felt [​IMG]. In the last year my defibrillator started going off, the first time it happened I was sitting at the kitchen table and my face slammed into the table and knocked me out. [​IMG] And it kept going off, I was afraid to go outside, go to the store. I have fell out at Wal-Mart and Target [​IMG] I have been asleep. So last Sept. I went back into the hospital and was put on Beta Blockers, a little dangerous if you have an implant. Well that worked, I thought. I have a device by my bed, hooked to a phone line that goes straight to another Cardiologist that watches my implant. And they called me about 10 days ago and said you are still having episodes. It hasn't fired but you need to go see your Doc.

    So here we are now, I am going to be in the "Transition for Transplantation" it just rolls off your tongue doesn't it. I am getting a LVAD also called a Healthmate 2 implanted. Former VP Cheney has one. So I am having open heart surgery and they put this mechanical thing under my heart that will make my blood flow constantly, and a line will come outside my body and I will have to wear battery packs.
    I should be good for 10 years and then I worry about the heart transplant.
    OK all of this sounds awful I know, but I am tough and GOD always has a plan. So I am not afraid.
    But I am mad [​IMG] I can't take another bath. [​IMG] [​IMG] I love my baths, I love to read in the tub. It will be showers only because I cant take the batteries off.

    Now I know we have other heart patients at BYC, anybody ever heard of or have a LVAD? And do they like it?
     
  2. coloradochick

    coloradochick Chillin' With My Peeps

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    Wow, I hope all goes well with the rest of the "transition". You've been down a rough road. [​IMG]
    I'm just starting to get tested for heart problems. I just got hooked up to a Lifewatch heart sensor/monitor. Have to wear it for 14 days to check for irregular beats. I had an echo cardiogram last week that the doc said looked good thank goodness. But I still get pains and the racing heartbeat so hopefully this little setup will find something. [​IMG]
     
  3. Doodle_Doo

    Doodle_Doo Chillin' With My Peeps

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    wow thats tough :s i dont have that but i reacently got out of the hospital from open heart surgery
    on dec 23 10 i had two bypass done..on the 21st of dec 10 i was on the computer and suddenly passed out..
    a dif/pace i had implanted in o8 saved me..in 08 i had the same thing and died twice before going into the ambulance the again in the hospital..i was givin a small chance to make it but here i am..
    but my problem is a birth defect which until age 19 it was dicovered..never in any physical did it show xrays or anything..even played sports in school..soccer basketball and football never a problem
    out of nowhere this arrithmia comes and boop what a scare..im going on 3 weeks since the surgery
    its tough but very true with god by my side anything can be done..
    hope everything gets better
     
  4. mamawolf544

    mamawolf544 Unbreakable Heart

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    So how do you feel if you dont mind me asking? And how long were you in the hospital?
    Those defib's are great aren't they, I love mine.
    I hope you have a speedy recovery. [​IMG]
     
  5. KinderKorner

    KinderKorner Chillin' With My Peeps

    Mar 8, 2009
    Southern Illinois
    Mine doesn't sound near as bad as yours. [​IMG] But IIt's long.

    I was born with a hole in my heart, and my two major veins where on the wrong sides. I can't remember the "name" for it. But they ended up moving one vein to the whole, then closing up the new hole they made when I was 5 I think.

    When I was around 12 I began having dry coughs. I would cough for hours randomly especially in the middle of the night. I never slept. When I turned 13 we bought a farm and there was hay dust, and dirt and mold. So they thought maybe I had allergies or asma. I never coughed up anything but for some reason I would just cough until I was unable to breath. I went to the doctor a zillion times, several times a month and they ran so many tests. It was awful. They put me on inhalors, singular, claritin, they tried all kinds of different stuff but nothing worked. At this point a weighed below a hundred pounds and was very tired. I slept all day long. I had no energy at all. I feel alsleep during the family thanksgiving on top of a freezer in the kitchen with 15 screaming kids. A few times I coughed up white toilet paper looking stuff. We told the doctors and they said there is no way there could be the stuff we described in my lungs. I was really sick, so we went in and got a blood test. I had super high white antibodies, and pneumonia. I've had about 50 chest x-rays. All of which came back with my entire left lung full of what looks like pneumonia. I remember how bad it was for years trying to figure out what was wrong. I remember how worried my mom was and hearing her pray and cry when I choked at night. It was terrible times not knowing what to do, and me getting worse. I kept getting reoccuring what they thought was pneumonia but my chest x-ray never cleared.


    I think I was 14 when one day I had an especially bad cough and I coughed up a huge rubbery white cast. It was the shape of a pencil, and about 3" long. It was a holiday and we couldn't get ahold of anyone I instantly felt better, and stopped coughing for a month. The doctors had no clue. So when I began coughing again shortly after we went in for a minor lung operation for them to have a look. I am extrememly scared of shots. I know they don't really hurt and I hold still, but they scare the daylights out of me still. I was so worked up about the IV when I went in. That the medicine to put me to sleep didn't work fully so I sat awake and watched finding nemo while they went in to check it out. It didn't hurt, and I was calm. But I remember distinctly the doctors going "Oh my goodness. What is that?" I looked up at the screen and sure enough there is a huge white thing that looked like cauliflower blocking my lung. I remember saying I told you so. haha. More doctors came in, and they tried for a few hours but couldn't get it out.

    Long story short they found out I had a rare lung diease called Plastic Broncitis. I believe I read somewhere there is like 42 cases known. It's a pretty cool diease if you look it up on google. My lungs create rubber substances made up of white blood-cells and fill up my lungs until suffocation occurs. Luckily only one of my lungs do it. There is no known cause although they believe it is linked with heart issues and no known cure. The only thing to do is try to clear out the lungs when breathing issues get too much. So 2 months later I go back in and they try to get it out again. Some does come out. And again I feel instantly better for a while.

    This is getting way too long so I will shorten it up a bit. I went on 3 inhalors,and about 4 pills to try to keep it from coming back. It didn't work but helped me breath a little. After some studying and found somewhere that a new idea was being used that a plumonary stent sometimes cured it. So I went in for a cardiac cath to try it at 15. When they got in they found my pressues where all off, and that my old heart repair have caved in. So a few days after I turned 16 I went back in for a major heart surgery. It was a sucess. But a few days later when they took me off the pacer wires and ventilation my heart couldn't recover. I was having 6 second long pauses in beats and had about a 35-50 pule. So I went on IV medicines, pills all of which didn't work. It was awful seeing no heart beat on the screen and the alarm sounding every few minutes everytime I went to sleep. After 11 days in the ICU they went back in and put in a pacemaker. Which keeps me ticking to this day at a rate of 60. Althought sometimes it makes me feel funny and I did pass out once in the shower. lol

    Years later I am doing good. I'm still a very sleepy person, I still cough, have bad x-rays, and am still sick. But it's not near the extreme it was and I am thankful for that. My body is constantly fighting off the broncitious so I feel tired, and loose weight. When I get real sick I go back on the meds for awhile to try to break it up.

    I haven't had a major flare up since my heart surgery. So they are trying to figure out if they were linked.

    Looking at me I don't look different from anyone else. And despite being tired I try to be normal. No one knows I am sick unless I tell them. I don't cough a ton during the day.

    It was rough, but you always pull through. I am thankful I have it better off than some people, and that I'm feeling better than a few years ago.

    I hope everyone else remembers that tough times don't last forever, even if it seems like it at the time. Hope you have a quick recovery Doodle_Doo.

    I wish you the best of luck mamawolf! Doesn't sound like fun. I'll be praying for you that everything goes well.
     
    Last edited: Jan 19, 2011
  6. redhen

    redhen Kiss My Grits... Premium Member

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    Quote:[​IMG] My little buddy... [​IMG]
    Whenever i read your posts, i always think about what a tough kid you are. We can all learn so much from you.. [​IMG]
     
  7. coloradochick

    coloradochick Chillin' With My Peeps

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    Wow Kinder, [​IMG] to you.
     
  8. KinderKorner

    KinderKorner Chillin' With My Peeps

    Mar 8, 2009
    Southern Illinois
    Thanks Redhen. When I get out of college next summer I'll come be your live in kid. [​IMG]

    Thanks coloradochick. [​IMG]

    But really, no matter how bad it gets there is always someone worse off. Remember how lucky you are. When I was in the ICU there was nothing wrong with me except my heart wasn't going by it's self. I was alert, and felt okay. I stayed by kids that were in a coma, had brain surgery, or that had strokes. I was feeling pretty lucky, that I was the only kid that could walk in the entire floor.

    ... and walk I did. lol. I lost all muscles and got weak from lying in a bed for 11 days, so mom made me walk circles around the ICU, dragging IV pole, external pacemaker, and chest tubes. [​IMG]
     
    Last edited: Jan 19, 2011
  9. mamawolf544

    mamawolf544 Unbreakable Heart

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    You are definitly tough. GOD bless you. I know what you mean. I never feel sorry for myself either. I always tell people it could be worse. So I am good, and stubborn.
    It is always the unknown that scares me, I am not afraid of death, I plan on seeing all my GK's graduate college.
    But you do sound like you have been through the wringer and with unanswered questions for far too long. [​IMG]
     

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