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Fed up!

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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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  • Fed up!

    I have just experienced the week from ****! How do you go from ICU to a psychiatric unit in one week(loooong story)! I've found that you will sign just about anything when you are on morphine, loritab, and xanax. BUT how do you go from a blood pressure of 60/16 to a "these symptoms are all in your head" There should be a law that puts these idiots on the psychiatric floor or in jail. The emotional roller coaster I've been on these past few weeks are worse than any beating I ever got. Oh I've got an idea lets take these quacks and tell them that they have a serious illness let them freak out for a week and then tell them it's our mistake

    I guess it should be good news that in one month my septum decreased from 2.3 cm to 1.1 cm. But the bad news is that they now say I have apical cardiomyopathy! What next I'm cured!

    I had a heart to heart talk if you will to Dr. M. Maron and we believed that a visit with them was in order. All of the test have to be re-done and then we can start over. Yipee more poking and proding!

    It is going to be financially taxing but if it gives me any quality of life back I am willing to take the financial burden. Thank G-d for my friends in Boston who were down visiting in I had this last episode that landed me in that quack house!

    Soooo if anyone is in the Boston area around the end of next week maybe we can get together! I sure could use the friendship!

    Mary S.

  • #2
    Re: Fed up!

    dear mary,

    i'm so sorry that this year is not going so well. i would come down there and beat some sense into those people if i thought it would work!

    hang in there and i'm dr. maron will figure something out for you.

    big hugs!!!!!!!!!!!

    s

    Comment


    • #3
      Re: Fed up!

      Mary - CALL ME!

      Big hugs!!!!!!!!!!!!!!!!

      Lisa
      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)

      Comment


      • #4
        Re: Fed up!

        Isn’t it amazing that when some doctors are stymied they quickly blame it on a different discipline, rather then trying to find out what is really going on?

        How come it is the patient who has to backstop the doctor? Seems like for most doctors a medical education is just a waste of money. You’d never believe their first order of business is, First Do No Harm!

        Sorry for venting Mary, but I get really PO’d at the way some doctors mistreat their patients. Hope Lisa can help you find a real doctor who in fact can help.

        Hang in there sweetie, sooner or later it will have to break your way. We’re pulling for you.
        Burt

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        • #5
          Re: Fed up!

          I've kinda noticed that many of the people that work in the psych unit are there for the employee discounts! It ain't you Mary, it's them! Be well.
          Lisa\'s favorite (and smarter) big brother.

          Comment


          • #6
            Re: Fed up!

            Mary,

            I'm fed up too! We should form a club. I put in a call to my cardiologist almost two weeks ago and i'm still waiting to hear from him. The nurse told me that if it's an emergency, go to the hospital, otherwise i could make an appointment with him in April. Yikes! I can't run to the hospital every time i have a problem that could be solved with a simple conversation with my cardiologist

            Hang in there... and i will too!

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

            Comment


            • #7
              Re: Fed up!

              I know the feeling. I called back in October, was told I could have an appointment in March. If it was bad to go to emergency, so I went up to the hospital where my cardiologists practices, got seen by an intern and never did see my cardiologists, so then 3 weeks ago I went to our local emergency, I had a cold and I could tell it went right to my lungs, well the doctor there wanted to give me some drugs, I had not taken them before and asked them to call my cardiologists, ( I must add here that the doctors gave my mother the wrong drugs and almost killed her). They refused to call my cardiologists. So then they said I had to stay in hospital, I said no problem, let me go home and get some stuff, and wouldn't allow me to leave the hospital, this is when they said I was in congestive heart failure. Well this blew me away. and I might add scared the daylights out of me. To make a long story short, I stayed in hospital for 2 days, asked the doctor who looked after me on the floor if I had been in congestive heart failure, and he said by what he saw on xray and ekg, NO!!!
              Why would a doctor put someone through that stress is my question??
              This is one of the reasons, that I am taking my daughter and going to Toronto to see real HCM people.
              Life is too short to worry about the trival things in life, So live life to the fullest.

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              • #8
                Re: Fed up!

                Mary,

                I feel SO sorry you had to go through this HE**!! Get on the next plane to Boston....they'll take care of you!! BIG HUGS from me too!!
                \"It is not length of life, but depth of life.\"

                Ralph Waldo Emerson

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                • #9
                  Re: Fed up!

                  Well, looks like I'm on my way to Boston next week. I will be flying out Thursday morning. My appointment is on the 3rd. Thought I'd get a little R&R while up there! My friend's parents have adopted me and man does she cook great! Last time I was up there she had like a four course meal and I told my friend that they didn't have to do that just because I was here. He said "she didn't she cooks like this almost every day" and she makes the best apple pies!

                  It still never ceases to amaze me how good the NEMC crew is up there. Absolutly everyone up there is excellent! Even Celeste who makes sure everything is in operating order! If they got any better I just might move up there and finish school (seriously contemplating this after this year).

                  The one thing though is how can these renowned physicians schedule me in on an off clinic day! I mean the Doctors down here in Florida can't even talk to me on the phone much less arrange a visit when they normally aren't in the office. Sorry for the sarcasm but it is going to take a bit to get over this past week!

                  I did do a last check in with my local cardiologist and told him he had better be available to talk to Dr. Maron on the third because it was really important for everyone to be on the same page!

                  Just the peace of mind is going to be worth this trip!

                  Mary S.

                  Comment


                  • #10
                    Re: Fed up!

                    Mary, Good luck, You've got my # if you want to call. Linda

                    Comment


                    • #11
                      Re: Fed up!

                      Whoa! I don't know if my heart can take it. Actually some good news heading my way. A poem that I wrote is actually getting published. It is the same one that I posted when Jim was having a bit of a hard time kinda like myself. After, I posted it I decided it was worth a try and it has made it to the semi-finals of a $10,000 contest. Who knows. Maybe a little luck may come my way not counting on it but would be nice! Anyhow, here is the poem.

                      I think about you

                      I think about you my friend.
                      About how you want it all to end.
                      I wish I knew the words to say.
                      Instead of "Wait one more day".

                      We have to be strong through this.
                      Just think of the friends we would miss.
                      If we decided all was not worth it.
                      That we decided it was time to quit.

                      I know life on Earth is [email protected]$$
                      But should we really ring the bell.
                      Are we really out of the running?
                      Even though we are tired of fighting.

                      The battles we cannot control.
                      Now that the ball has begun to roll.
                      We feel like a snowball headed for [email protected]$$.
                      We even attempt suicide and fail.

                      But somehow we will survive.
                      And wonder how we are still alive.
                      Even though we wanted it to end.
                      Seems like for us the rules will bend.

                      Big thanks to all who support me here on this board!

                      mary S.

                      Comment


                      • #12
                        Re: Fed up!

                        Mary, I wish you all the luck in the world , you deserve it . Thank you for sharing your beautifull all so poignant poem with us . The poignant refers to me as I have recently been trying to convince someone so special so beautifull , so gifted and so dear to my heart how important it is to go on and survive and to not do something that could end her life. This brings tears to my eyes as I watch her struggle , I recall similar struggles and feel the part of me that in so strongly in her once struggled to survive feeling unworthy of life. I pray for god to send her strength each day and let her see that life can be full of struggles but oh so beautifull as well. This sword has a triple edge for me and my family and I pray it not go further. My grandmother commit suicide when my dad was 14, my cousin when she was in her early twenties and my nephew when he was 18. He died tragicly as I was trying to bring him back and as I was trying to bargain with god to take me instead, my heart still aches from losing him and remembering the sounds, the smell of cigarrets on his breath as I did CPR and the visions of his death. So thank you Mary and god bless you and guide you through this difficult time. 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

                        Comment


                        • #13
                          Re: Fed up!

                          Pam,

                          I am so sorry to hear of your loss. I hope you can convince your friend that life is so worth it no matter how bad it seems to get. The one line that always keeps me going is "one day it will get better". You may not notice it but one day you will look around and realize "hey it did get better". It took three years for me to realize it but I did and the weight off of my chest was enormous. This was all thanks to my friends who helped me pull through. So keep fighting for your friend.

                          Mary

                          Comment


                          • #14
                            Re: Fed up!

                            Thankyou Mary . Your strength , determination, perseverance and survival ,inspires me to be strong and to hang in there and to not give up on her or her battle for life. I think one of her main stressors as there are many is that I need to survive for her. She watches and wonders if she too will get this dreaded heart disease. Because of this I am wondering if she should get screened again ; I am not sure she could be strong enough to handle the possibility. Her older sister is showing signs and symtoms of HCM so I am trying to get her squared away first. Like I said earlier this is not her only stressor but nonetheless a big one .Thankyou for responding and offering your support and words of wisdom to me it helps more then you could know. I am often at my wits end and know this is not helping my heart recover or just be stable since surgery. Take Care of you and I will be thinking about your trip to Boston , where I know you will get the right help. 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

                            Comment


                            • #15
                              Re: Fed up!

                              Pam your friendship is a strong one and it is valued. She may not say it but she needs friends now more than ever. Just remember we are never given more than we can handle. Trust me their are times I have doubted that statement but I'm still here.

                              My Friends

                              Upon their shoulder I can cry.
                              When I feel the need to no longer try.
                              With their heartsy they help carry my burdens.
                              When I feel so uncertain.

                              Their tears let me know they care.
                              When I believe life is unfair.
                              Their love is given without obligation.
                              Which in my eyes is an awesome proclamation.

                              Whether it be a shoulder or a tear.
                              These people gave it to calm my fears.
                              With love filling their hearts,
                              They helped me believe in my own heart.

                              To all of my friends who have helped me become the person that I am!

                              Mary S.

                              Comment

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