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Does it ever get better?


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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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  • Does it ever get better?

    What a day! I woke up this morning with chest pain shortness of breath that was really bad . AFter a couple of hours I could not stand the pain any more and had to go to the hospital. I'm still in Boston so I went to NEMC pretty good ER I guess.

    The frustrating part I guess is that there is nothing that can be done traditionaly to end these episodes. So Dr. Maron said if the pain got bad enough that I still have to go to the ER to get pain meds. I was so hoping to be able to put an end to that. We are going to try some experimental stuff and I pray it helps. But nothing has yet so I'm not getting my hopes up.

    I don't know what I'm going to do once school starts. When I have one of these episodes about the only thing that helps is morphine. It also makes me so sick that I don't know what is worse the neasea or chest pain. If I get a drug test during the nursing program I fear I will get kicked out because it will show up as opiates.

    At this point I wish anyone had answers but it seems no one does. This is the one case where I don't like being different. I'm supposed to fly out tomorrow but I'm feeling so cruddy right now I don't know if I can handle it.

    Sorry for the pity party but I'm feelin pretty down right now.

    Mary S.

  • #2
    Re: Does it ever get better?

    Mary that's why we are all here to lend an ear when we need it, and talk to people who understand, the chest pain i can't give advise on i wish i knew what would make it go away, well for now i guess my chest pain will remain until my sternum heals, Monday will be 2 weeks since my myectomy so i guess i have a few more weeks of healing to go, I hope the docs find something for you soon, you diserve a break

    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


    • #3
      Re: Does it ever get better?


      Hang in there buddy... I know how very frustrating it can be. You have all these symptoms that just seem to keep getting worse and worse, there's no relief in sight, sometimes even the specialists seem baffled, and you're wondering if it's ever going to end.

      I can't offer you any advice, I'm sorry... I don't even have any answers for myself right now. But at least know that there are others walking the same shaky path as you are right now, and believe me, I'm just as frustrated.

      I'm here anytime you want to chat, and if you want to PM me, i'll be happy to give you my phone number as well. I have free minutes on my cellphone after 9:00 pm. That is, until they repossess it

      You take care,

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


      • #4
        Re: Does it ever get better?

        Mary, I am sorry you are not better. I hope and pray that this experimental stuff will work for you. Maybe it is just not so quick . I'll keep all fingers and toes crossed for you. Would they really do a drug screen at nursing school? My daughter is in her last year and has been on many meds including opiates and never had a test or a problem as long as it is safe for you to drive to class or clinical it should be safe for you to be in school and around patients . Besides you have documentation for reasons of prescription right? I would think this is one worry you don't need. Hang in there . Pam
        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


        • #5
          Re: Does it ever get better?

          Well Mary,

          I hope you made it home okay!
          I gave you all the answers i had when we got together in boston. The MS contin has really saved me from hospital visits. I thought i was going to have to make a visit myself to the ER there but i escaped when the immediate release morphine finally kicked in.
          I know how hard it has been for me to except that i am a "tough" case.
          Just know there is someone else and probably others and you are not alone.
          If you are drug tested and have an active prescription you should be spared from being "kicked out" of the program.
          The options given us will hopefully help once procurred. Did you see that the Heart bar needs a prescription?.
          Mary all we can hope for is a better day each day.
          I hope you are well today

          Laura Johnson


          • #6
            Re: Does it ever get better?

            Have you tried relaxation exercises? I find the work great.
            Life is too short to worry about the trival things in life, So live life to the fullest.


            • #7
              Re: Does it ever get better?

              Well, at least for me, I had bad times, and times when it got better. I was not diagnosed until I was ready to die from it at the age of 56, but I had many years when it was killing me, from my 20's on and then it would get better for a few years, then later worse.

              So don't feel that it will always be the way it is now---It is all so mysterious, but the best advice I can give is take good care of yourself, watch your weight and continue to do whatever moderate exercise that you are capable of, and know that things can take a turn for the better.


              • #8
                Re: Does it ever get better?

                Thanks to everyone for all of your care and support! Life has a lot of bumps in the road and some days they seem pretty big. But I'm taking it with stride and I know things will get better some day!

                mary S.


                • #9
                  Re: Does it ever get better?

                  I feel for you. I have felt that way many times. I'll pray for you. Jennie


                  • #10
                    Re: Does it ever get better?

                    so I see you were keeping everyone busy while I was away. How are you feeling now? And what's going on with works?
                    Take care ( not a request simply an order )
                    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)


                    • #11
                      Re: Does it ever get better?

                      Mary, this is in responce to an older posting. (does it ever get better). I certainly hope so. I felt much better for about 6 months after my mitral valve sugery last April. My chest pain was almost gone, I was still tired and short of breath, but thats easier to cope with than wondering when the chest pain is going to kill you.I to go to NEMC,and I am experimentig with a drug change. I have to call the team in a week to give them a progress report, so far I havn,t noticed any change for the better, but we need to keep moving forward and don,t look back.Thats not always easy,but think of where we would all be without modern medicine.
                      GOOD LUCK dennis


                      • #12
                        Re: Does it ever get better?

                        Thanks Dennis,

                        Things are getting better slowly but surely. I just keep steaming along. Sooner or later I'll get there!

                        Mary S.


                        • #13
                          Re: Does it ever get better?


                          Thanks for your post. Your attitude alone must make things alot better! Reading your post actually lifted my spirits (I sometimes worry about someday having symptoms as intense as you describe..hopefully I'll have your attitude as well!).