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Need a few good thoughts


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Toogoofy317 non-obstructed hcm, AICD 11-01-02 and 10-6-05
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  • Need a few good thoughts

    Well, here we go again. Another stay at the hospital. It happened at school this time and was a bit embarrasing. I was sitting in class during lecture hadn't been feeling too well all day but thought I could make it through three hours. Boy was I wrong. As I was sitting there I started getting chills all over my body and sweat just started streaming down my neck, back everywhere. All of a sudden I got a sudden urge to go to the bathroom felt really sick by the time I got there. Barely made it to the toilet. That is when the unbearable chest pain hit me. I stumbled back to my chair fortunatly (unfortunatly I don't know anymore!) one of my fellow classmates was a paramedic he got a bad feeling came over to my chair and alerted the professor I told him what was going on so 911 was called during class. I tried to make a graceful exit but it didn't happen here came all the fire trucks and everybody. What a mess.

    Finally they got me in the ambulance where they tried to get a line apparently I was an even harder stick than normal she tried everywhere, 3 times in the arms, once in the neck and even in my right shin. That was one of the most painful things in my life. Well, apparently I wasn't stable so lights and sirens to the closest hospital. One I had never been too. They saw me and of course admitted me. I wish the chest pain was the only thing going on! They did the CT of my chest and found a mass beneath my breast bone. They were a bit concerned so a thoracic surgeon was called in. He said it could be the remnants of the thymus gland or it could be cancer so in six months I have to have another ct scan.

    While in the hospital I was still having stomach problems in the past 6 weeks I have lost more than twenty pounds. But, apparently that was no big deal so I was discharged yaking all over the place and hunched over in pain. I am to try and get a follow up visit with my new GI and let them figure out what is wrong. I've been trying to get these idiots to do something the last month and nothing is happening!

    I am seriously at the end of my rope here and I don't know what to do. I don't know who to go to. What to ask for. I feel like I'm going crazy. Is this all in my head or does something need to be done! I guess losing 23lbs is nice but I'm just afraid at how fast it's happening!

    Mary S.

  • #2
    Mary, I hope that the new hospital gets some new thoughts for your doctors to go with and check out. Try to hang in there.


    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.


    • #3

      I am sorry you are under the gun yet again. Maybe this new hospital staff will look in ways the old ones did not. Please know that we will pray for you.


      God Squad co-moderator
      Nothing is as gentle as strength and nothing is as strong as gentleness


      • #4

        I'm keeping my fingers crossed for you lady, Hope you are feeling better though

        Diagnosed 2003
        Myectomy 2-23-2004
        Husband: Ken
        Son: John diagnosed 2004
        Daughter: Janet (free of HCM)

        Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9


        • #5
          Mary--I sure hope you get some good answers soon. It seems like dealing with people with multiple problems should be a specialty in itself--do any of the big clinics take that on?

          I am so sorry to hear you are doing so poorly--I have no answers but am glad you let us know so that we can send our thoughts for your wellness your way. I certainly will have you in my thoughts, Lisa Inman.


          • #6
            Well, I spoke with my cardio the other day about my last hospital stay. She told me to pick one Work or School. I cannot even attempt to do both anymore. And I don't know what to do. I only have two classes this summer until I graduate. She told me that they would be completly supportive if I went on disability. But, I actually applied six months ago and they are still processing it. I can't quit my job because I would have no way of paying for my medications if I did. I also inquired about part time work and the increase in insurance would mean I work just to pay it. I inquired about medicaid here in the state of Florida and the only way I can get it is if I was deemed disabled by SSA. The kicker though is if I was an illegal immigrant, pregnant, or had kids I would immediatly get help. I guess as they say no good deed goes unpunished!

            I don't know what to do. I am feeling more and more depressed but I can't even afford to talk to a psychologist! I really wish I could get rid of all of this pain and the fatigue is dibilitating in itself. All I ever do is sleep anymore and I am using my home 02 a lot more these days. You know some days I wish I were obstructed so that I could have some chance of getting any relief. None of the meds work, or if they do they drop my bp to the point of not being able to function.

            Do you have any idea how much it sucks that the big HCM specialist don't even know what to do anymore. It feels like I've got no support right now and this is when I need it most. I have nobody I can go talk to to get it out and it is frustrating. I honestly don't know how much longer I can realisticly go on like this. The stress is just overwhelming.

            Oh well thanks for the pity party

            Mary S.


            • #7
              I'm sorry things aren't looking too good right now. I know they will get better. Hang in there!


              Husband has HCM.
              3 kids - ages 23, 21, & 19. All presently clear of HCM.


              • #8

                It sounds to me like the original event was again caused by a shift of fluid volume. Now the thing I can not seem to figure out with you is how your body gets so darn dehydrated so fast? For those who may not know this I have actually seen this happen when I was with Mary about 2 years ago. Fluids seem to bring you around rather fast - the trick is HOW to stop you from getting dehydrated so fast??

                I am thinking - but boy oh boy you are a challange my dear

                Be well,
                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)


                • #9
                  Mary, good luck. I will keep you in my thoughts and prayers. Is there anyone you can talk to like a pastor, school counselor just someone to vent if nothing else. Hang in there.

                  Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                  ICD&Pacemaker 1996
                  Heart transplant March 19, 2004 @ Mayo Rochester
                  Mom of Kaye.


                  • #10
                    Mary ,

                    I too wish there were more that I could do . Words of encouragement I know are wonderfull but you really do need an angel to visit, I wish and pray that things will turn better for you. Hang in there.

                    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
                      Mary I am sorry to hear things are still not going well for you. I hope things turn around real soon and everything starts looking up for you SOON!
                      mom to Andrew(HCM) 21 years old
                      Diagnosed \'95 age 5
                      Myectomy \'96 age 6
                      ICD implant \'99 age 9
                      First ICD shock (X2) \'04
                      ICD replacement surgery \'05 age 15

                      *And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)


                      • #12
                        Dear Mary,

                        I wish I could be there to give you a big hug. It sounds like you really need one! So, here's the best I can do from here

                        I will also be praying for special wisdom and grace for you.



                        • #13
                          Oh geeze, what a week. I went to my local docs office on Friday because I was feeling "off" apparently I no sooner sat down and I passed out. I don't remember anything until that night when I got to ICU! So I spent three days there they could not get my bp above 60/20 finally with the aid of medication they got it up to 90/60 and they let me go today. Unfrotunatly, the medication florinef is making me retain water like mad I'm swelled up all over. They just can't get my fluid in the right places. I get so dizzy and fatigued when I walk now they have recommended a walker to help me get around for now. Boy, that makes me feel old. I don't know how I am supposed to go like this! I also missed my finals this week one professor is working with me but I've yet to hear from the other the one I wasn't sure about. I wish there was a way to protect students with disabilities!

                          Oh well, sorry for not contacting anyone sooner!

                          Mary S,


                          • #14

                            I guess students with disabilities (or at least students with HCM) don't have the same rights as workers with disabilities do. Last year when I was in congestive heart failure and had to withdraw from classes, they refused to refund any of my tuition, booted me out of grad school, put a big fat 'dismissed' on my permanent academic record, and only agreed to let me back in after my surgery if I agreed to go on probationary status. And I have a 4.0 average!

                            But like one of the higher-ups told me when I was explaining my HCM... "It's not like you're in a wheelchair or anything". On a separate occasion, one of my profs saw me eating a slice of pizza in the student lounge and said, "Isn't that what got you into trouble in the first place?"

                            Nice, huh?

                            Hang in there,

                            "Some days you're the dog... some days you're the hydrant."


                            • #15

                              There are protections for students with disabilities. Mostly they involve equal access, but I think they are written generally enough to cover your situations, and probably Jim's as well. Every university should have a "Disabilities Office" of some sort. When I was teaching at VCU, I found the people from that office that I worked with to be fair and smart. They seemed to be very good at supporting those students who really needed help.

                              Find them and get their help! Unfortunately, they do have more difficulty helping after the fact than before the fact, so go soon.



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