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When it rains it pours


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Toogoofy317 non-obstructed hcm, AICD 11-01-02 and 10-6-05 Find out more about Toogoofy317
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  • When it rains it pours

    It just never seems to end! I've been sick the past couple of weeks with seemingly every part of my body breaking down. I've lost about 12lbs in the past two weeks. I'm barely eating once a day. I look at food I feel sick to my stomach when I eat a couple of bites I feel full and want to vomit. I have severe pain in the lower right part of my stomach. I've had a kidney infection almost constantly the past few weeks with blood in the urine. And my chest pain and sob are getting worse. It was so bad last night I thought I might acutally die. I've never had that feeling before. Even today I'm sob. I'm so tired of going to the ER and then release me a couple hours later with no real answers. On, Thursday I was taken by ambulance to the hospital with a bp of 53/24, nausea, vomitting, chest pain, fever, and UTI. I was discharged an hour later with a script of augmentin.

    AND to make matters worse. The transmission to my 2000 neon with 80,000 miles on it went out. It will be over a thousand dollars to fix! I don't know what to do. And my insurance is still denying the claims and they say I have to file a civil suit as my next choice.

    It is times like this that I really do want to give up. I am tired of running around in circles. No doctor wanting to take responsiblity of my ailments and an insurance carrier breaking the law. I know life's not fair but give me a break! I just can't do this by myself.

    Mary S.

  • #2
    Mary, I don't know what to say, I am so sorry you have all this going on.

    It is a lot to deal with.
    I hope you get over those health ailments soon. And I hope you can get your car fixed and the insurance issue taken care of.

    I will pray for you, I'm sorry dear.


    49 yrs. old
    Diagnosed at 31.
    Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
    First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
    Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
    Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
    My brother passed away suddenly at 34 yrs old from HCM.
    2 teenage children, ages 17 and 15.


    • #3
      Oh Mary, I'm so sorry you're feeling so sick & that it all seems so out of control. What can we do to help you now?
      I Pray you have Strength to get thru this time.


      • #4
        Oh dear, that's a lot all at once

        Why does it always seem that with HCM or other chronic conditions you have to be more aware and alert

        Seems all sorts of people think we're not serious, or not worthy, or not equal

        Ok, when your transmissions really has broken down, remove the bottom of the car and imitate Fred Flintstone

        \"Hope is disappointment postponed\"

        Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

        Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

        Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

        Meds (current) sotalol, dabigatran, furosemide.


        • #5
          Thinking of you!

          Hi Mary,

          I was so sad when I read your post. I hope things go better here in the next few days / weeks - sounds like it can't get much worse eh?

          Try to keep positive. I have read many of the posts you have written on this website and you seem to be such a positive individual. You have likely helped many people with your words of encouragement. I hope you gain some strength from all of us.

          Best wishes!

          John Murray
          41 years old. Diagnosed with HOCM in Feb 2005. Myectomy at Mayo on June 8, 2005


          • #6
            Mary -
            Sorry to hear you are having a hard time. If you have a kidney infections and your B/P is so low you are likely getting dehydrated - have you been drinking gatoraid or similar to help stay hydrated - the simple things do help us feel better.

            Hang in there kiddo.

            Knowledge is power ... Stay informed!
            YOU can make a difference - all you have to do is try!

            Dx age 12 current age 46 and counting!
            lost: 5 family members to HCM (SCD, Stroke, CHF)
            Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
            Therapy - ICD (implanted 97, 01, 04 and 11, medication
            Currently not obstructed
            Complications - unnecessary pacemaker and stroke (unrelated to each other)


            • #7

              I am sooo sorry you are having so many problems. I will be praying that you get better, that you find a cheaper way to repair the car and that you get the money from the insurance company.



              • #8
                hi mary,That is a lot to deal with.I have had times in my life when everything went wrong at once,and I had no answers,but I can honestly say that things have a way of working out even in circumstances that seem impossible.just keep praying to God for the strength to carry you through one more day,and dont give up no matter what!!!remember people need you here. I'm praying for you take care M.O.B
                One day at a time.


                • #9
                  Can't get any worse huh? I was taken into the Nurse Managers office today and was bluntly told that I was not to let any of my co-workers know anything about my heart condition. They said it would cause undue stress on my work environment. I was admonished about leaving forty five minutes early last night because of crushing chest pain. Also, my two absences over the last month and a half all of a sudden turned into four and I had to prove that the days had been approved.

                  The only reason I told anyone about my heart condition was because the first week I was there. I walked out to my car and collapsed and was down for about an hour and no one ever found me.

                  If I wanted this kind of treatment I would have stayed at Disney. It was only sixty cents less an hour and no where near as much stress. This place makes Gainesville look superior (those of you who know my beginnings with HCM know what I'm talking about),

                  I just can't help but wonder what did I do to deserve all of this

                  Mary S.


                  • #10

                    I am so sory you have been going through this and wish there was something we could do to turn things around for you and make a real difference. Just know that we are all here and pulling for you.

                    I pray for brighter days for you.

                    Dx @ 47 with HOCM & HF:11/00
                    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                    Lead failure,replaced 12/06.
                    SF lead recall:07,extracted leads and new device 2012
                    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                    Genetic mutation 4/09, mother(d), brother, son, gene+
                    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin


                    • #11
                      Well, got the price for the transmission. $1800 I only have 1000 and I don't know how I am going to get the rest. I worked so hard to finally get a little money in the bank and I am back to being in the hole yet again.

                      I was called into the office yet again about the attendance issue and they all but called me a liar about my side of the story.

                      I think this stress is really getting to me or the illness or both but for the last four days my chest pain has increased in both acquity and frequency. It makes doing anything very hard.

                      If anybody has any ideas how I can get $800 by Tuesday I'd be very much appreciated. Oh, I got it maybe we could do a telethon for me. I guess what is worse is that I may not be able to go to the annual meeting now.

                      I am getting very depressed about all of this and it seems like I'm not getting very much support from most of my friends (local). I would go to a councelor but that cost money upfront because of my stinking insurance. At this point I just want to scream my lungs out and see if that would help.

                      Oh well, sorry for the rant.

                      Mary S.


                      • #12

                        I'm not a gearhead, but I have had a transmission or two replaced and $1800 for transmission replacement is definitely alot of money. Have you gotten multiple quotes? Is this a dealer? National chain? or local transmission shop? Personally, I'm very skeptical about the national chain (honk, honk). Ask a local shop about a rebuilt transmission instead of a new one (if you haven't already). Hopefully you'll be able to make some phone calls instead of having to run around visiting these places (which is hard to do when you're not feeling well and your wheels aren't working, either).

                        And what's going on that your 2000 model car needs a new tranny after 80,000 miles?

                        Good luck!!!
                        --Living life on the edge .. of a continent!
                        Charter member: Tinman Club


                        • #13

                          I can truly understand how desperate you feel right now. I'm at that point right now following what was almost a disasterous myectomy surgery two weeks ago. But try and reach out to close friends and family for support. You really know who you friends are when this kind of this happens. Its so important to have support. If I didn't have Kate my wife right now I don't know what I would do. Please try and keep your chin up and hand in there. People have been telling me things always get better with time.

                          Many many positive thoughts for you.

                          Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.


                          • #14
                            Mary was the Neon new when you got it. Did you get it in 2000? If so you might try calling the manufacturer. Or just calling them anyway. Sometimes they have silent recalls going on and do not alert the public. I did this on two occasions for my dodge caravans years ago. The first time it was covered outright. The second time the manufacturer agreed to split it with me as it was a little over the mileage they guaranteed. I would never had gotten their help had I not called. I hope it works.

                            I have also done this same thing with many products and appliances. You would be astounded how many times big companies have been generous and very cooperative.

                            Dx @ 47 with HOCM & HF:11/00
                            Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                            Lead failure,replaced 12/06.
                            SF lead recall:07,extracted leads and new device 2012
                            [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                            Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                            Genetic mutation 4/09, mother(d), brother, son, gene+
                            Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin


                            • #15
                              Unfortunately, I bought the neon in 2001. It had about 20000 at that point. I don't know where I am to come up with 800. I'm just feeling run down right now. My chest pains are becoming more frequent and intense at times. I am just so tired of doctors right now that I don't even want to call to see if it is something, I am going to go to a counselor tomorrow because I'm beginning to feel real depressed about everything.

                              Thanks to everyone for their tips and support. They are appreciated.

                              Mary S.