If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you


No announcement yet.

On my way to Boston


About the Author


Toogoofy317 non-obstructed hcm, AICD 11-01-02 and 10-6-05 Find out more about Toogoofy317
  • Filter
  • Time
  • Show
Clear All
new posts

  • #31
    Re: On my way to Boston

    Mary is now in a private room, although she says she just has them "scratching their heads" as to the next step. This whole situation is quite a trial for her, which we all know. She expects to be in the hospital till Monday am when her doctors come back from vacation.

    Her cell phone reception is sometimes poor, so her room # is
    (617)636-8189. She thanks all for their prayers and well wishes.



    • #32
      Re: On my way to Boston

      I too have just talk to he and she is in a better mood if you can call it that, i told her to hang in there until monday when she can talk to Dr. Maron and they will work it out

      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


      • #33
        Re: On my way to Boston

        Thoughts and prayers... so many! I think I will even try to call Mary tomorrow.

        Mary, I am so sorry you're suffering so much. I watched my mom go through so much of this and it makes me very sad to think that someone else is going through it now.

        God Bless, and please just know that there are a lot of us out here pulling for you and wishing we could help in some way.



        • #34
          Re: On my way to Boston

          Mary, I am just back from vacation and was checking in on you from your PM you had sent me. So sorry you are having problems. Remember you are in a good place this time they will figure it out. I know sometimes it is hard but keep trying to have a positive attitude. If you believe in God, pray pray pray. it helps. I will keep you in my prayers till I hear from you again.

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


          • #35
            Re: On my way to Boston

            "they don't know what to do". They can't say it is the heart but they can't say it isn't. I was discharged to day after passing out in the bathroom and was in so much pain I cried. The resident said there was nothing more but to try this new drug. If it doesn't work I might be stuck taking the strong pain killers.

            This was not the news I wanted. Just the thoughts of having to live with this pain make me not want to try anymore. It seems as if I have lost everything! They wouldn't even tell me if I could go back to work he said my primary can do that.

            I never saw Maron or Udelson during this hosptial stay. So I guess I need to call them soon.

            Mary S.


            • #36
              Re: On my way to Boston

              Let me get this straight. You passed out in the hospital bathroom and they discharged you? There isn't anything else they can do at this point? That sounds weird, but there may be lots of things I don't know. Hang in there and give Drs Udelson and Maron a call.


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


              • #37
                Re: On my way to Boston

                This is not the first time she was being discharged and passed out when she got out of bed to get ready – and was discharged anyway. This girl just can not catch a break any which way.

                Personally I think, (and hope) that Dr’s Maron and Udelson were unaware of these goings on. With three chronic illnesses identified to-date (if they are correct) I’m sure she presents a very complicated and confusing picture.

                I still believe this facility and these two doctors hold her greatest hope for at least gaining control of her conditions – or at least her HCM. Once that problem is resolved in some way, other specialists may be needed to address her other conditions, but it has to be, and should be, the most pressing condition first.

                Lately Mary has been batted around more often then a tennis ball in a school gym, but like that tennis ball, she keeps bouncing back. Once she recovers from the latest onslaught of rackets, she’ll see her way clear to the next step. What do you say we all have a prey-in and let G-d know what’s going on.


                • #38
                  Re: On my way to Boston

                  For Sure!

                  Mary, I pray every day, and I will include you tomorrow, and the day after and the day after and the day after... you get the picture.

                  Please don't give up. My mom was in so much pain, she told my Dad to just take her out in the yard and shoot her. Nobody knew what to do with her, either.

                  But she just kept going, and then finally got approved for the heart transplant, and eventually got one. Her story is a sad one, but there is hope for you. Don't ever give up hope, because miracles do happen. You have so many pulling and praying for you!

                  I will continue to watch your progress and, like I said, keep you in my thoughts and prayers.



                  • #39
                    Re: On my way to Boston

                    Good Day Mary

                    If you are still in Boston, I do hope you are enjoying the beautiful day today! There are some great parks where you can sit and enjoy the sights and the beautiful sunny day (sitting over on the waterfront or in the commons is a couple of my favorites) ...

                    You made a comment that you did not have an opportunity to be seen or speak to either Dr. Udelson or Dr. Maron while you were in the hospital - I do know that Dr. Maron was on vacation, and from our family's experience, the doctors do and will dig to find the answers to what is happening ...

                    Although nothing as severe as you are experiencing, my husband had some "things" happening that the doctors couldn't quite put their finger on & that didn't seem to coincide with what typically happens with HCM - Dr. Maron scheduled other appointments (within the HCM clinic and also with other doctors) so that they could "dig" and figure out what is going on ... we've already gone for some appointments, and thankfully have found out some great news ... and we're excited that they'll continue pinpointing as my husband's quality of life is already showing signs of improvement & hopes for continuing improvement!!! !

                    As was suggested to us ~ don't give up or lose faith ... keep calling ... talk with either of the doctors - they really care and appear to truly want to assist in helping people live happy lives - they appear to be in the profession for the right reasons!!! !

                    And again THANK YOU to all of you who continue to support, encourage & pray for my husband and our family!!!

                    In our thoughts and prayers
                    The Brown Team
                    \"Find rest, O my sould, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken.\" Psalm 62:5-6


                    • #40
                      Re: On my way to Boston


                      Hang in there!!

                      You're in our thoughts and prayers.



                      • #41
                        Re: On my way to Boston

                        Hi Mary
                        You need strength to get through the terrible ordeals you have been put through for so very long. Please read our post. Time and time again, if necessary. WE ARE ALL PULLING FOR YOU!

                        We do not have the answers for you, but we do have faith that your doctors will research more of your health issues. From what I've read, you're a pretty complicated young woman. It is going to take awhile before they can hit the nail on the head. Don't give up. Losing faith is what is going to take a toll on you mentally and physically.

                        Call your doctors until you can speak with one of them directly. Tell them you are not ready to give up. Ask them what they have found in the tests they did. They have got to have an answer of what they THINK it is. I do believe that as soon as you talk directly to one of them, they will go on testing. NO physician can say...it can be or it may be.....and let it be at that. Guessing is not the answer.

                        Please let us know what is happening. We are all praying for you.


                        • #42
                          Re: On my way to Boston

                          Mary - I am sorry I did not call you - I had a great deal going on here at home. I will try to reach you in the next few days. take care and be strong!

                          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)


                          Today's Birthdays