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Pam Alexson single mother of 3 wonderful young adults;a special ed teacher, an RN and a senior accountant. Find out more about Pam Alexson
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  • I need support

    Hi everyone it has been a while since I've posted but I need support , advise before I go nuts. I had e-mailed Lisa recently and she has helped with some pressing choices as she is always a wealth of knowledge and support and thought I would open this to the forum. I have been seeing my specialists in Boston and working the med route. My atenolol was increased to 400 mgs. daily. After dealing with the effects of the increase the response for symtoms was about the same at 300 as for 400 except that I was very very depressed at 400mgs. So back to 300mgs. and my head is no longer in a funk. Well that aside it is felt that I need to go forward with an intervention and I agree . As posted by Doug he will be one of the 1st two done at Tufts. I started to panic a bit and called Lisa and we talked and then I spoke with the docs in Boston regarding getting in there to be one of three done with Dr. Dearani standing in,which possibly could have been a plan. After discussing this option I had calmed down a bit and Dr. Maron agreed that I was feeling a bit rushed and I have not even gotten an appointment with Dr. Rastigar for the "Talk" yet . Well this at least gives me a little time to get my affairs in order. So I was starting to feel more relaxed and confident about the time table. Dr . Udelson said Dr. Rastigar will be blunt and spell out all the risks and if the risks are too high I may have to consider the ablation versus the myectomy even though my preference is surgery. Well today my mom and my brother went for their checkups at the Brigham where I had previously gone. They still see my former doc. Well my mom said he is so upset about my decision and feels if I go forward it maybe a very detrimental outcome . He had seen me through my diagnosis and implant of ICD. The reason I sought a second opinion is that he kept telling me there was not much that could be offered to help me and that the two available options were too risky for me. He now wants me to call him as he feels I have become desperate and am choosing a desperate and dangerous option for me . He has never mentioned to me in the past any explanation that my weight was an obstacle . From 1995 when my HCM symtoms increased to the year 2000 my weight increased 100lbs . Since dx and management of my chf my weight has actually gone down by 25lbs . I am still heavy at 264 and 5ft 4in. But very muscular as I was always strong all my life so weight on women you know varies but it is weight and stress to the heart and systems. The other two issues is I have severe sleep apnea and Type II diabetis or hyperinsulimia. These are managed ,the sleep disorder by a bi-pap machine and the diabetis by glucophage and I am stable . He told my mom for all the above reasons the only possibility for me would be to start with the ablation I am so confused and overwhelmed I will call the docs in Boston and I don't wish to be rude to my old Brigham doc but what to do? I am sorry for the length but would greatly appreciate all your imput . Thanks 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

  • #2
    Re: I need support

    Pam,

    I want you to know that what you are going through is too much to consider in a short period of time. Don't be rushed...not by the doctors or by anyone. I am making this decision that I am because it seems right and by all accounts I don't have the issues to consider that you do. Please take your time making this decision and consult your specialist at BWH as well. Talk to everyone. Don't jeapordize your health. Doctors have varied opinions on these things and the bottom line is if you don't feel it is right in your gut, don't do it. If you feel deep down you are ready and feel OK with the option you have chosen then you will know. I will definitely be letting you know what my outcome is and can give you some inside info on what I am going through both with the surgery and the long road to making this decision. I hope I can help. Best of luck to you and please keep in touch with me. I will be away next week of course, (surgery day is Tuesday) but as soon as I can hold my laptop on my lap will be right back here. Take care,

    Doug
    NEMC's (Boston) First Myectomy 7-22-2003

    Comment


    • #3
      Re: I need support

      Doug Thankyou for getting back to me and for being on target . I really thought that I was facing the right way and now my children are nervous also . You are definitely right and you said it! Take my time and think and listen to it all .What is my rush? I have been feeling and functioning poorly for longer than I have given this decision thought. I wish you all the best and will have you in my thoughts and prayers and certainly feel all will go well for you. I will think all good thoughts for you and your family . I will look forward to watching for your posts. In Faith, 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


      • #4
        Re: I need support

        Dear Pam,

        While I'm sure your old doctor means well, it is not very nice to potentially scare the bejeezus out of your mom by telling her you will have a "detrementatl outcome" from surgery. The professional thing would have been for him to call and ask you about it himself.

        My mom and I shared a doctor for seven years or more and he never, ever spoke of the medical situation of either one of us with the other. It just isn't done. Even if my mom had told him about me, he would not have burdened her with his thoughts on my situation.

        Surgery is a big deal, and shouldn't be rushed. Even if you do go forward with it, you can choose to have it at Cleveland or Mayo or Minneapolis or Pago Pago, even (well, no one is recommending the later *grin*) if you don't want to be an "early" patient at Boston. You won't hurt their feelings; they want what is best for you --and if that means you go elsewhere, that is what it means.

        It also means that they aren't going to recommend surgery if you won't live through the procedure. So see what they have to say, get a second opinion (it is surgery, you know) if you like, and then consider your options. And if losing weight makes surgery more viable, maybe that will help you lose some.

        Good luck and take care,

        S

        Comment


        • #5
          Re: I need support

          Pam,

          I'm sorry to hear that you are going through such a rough time right now. I agree with Doug and Sarah... there is no need to rush in making a decision like this. In your own words, you've been living with HCM for a long time, so there's no need to feel hurried now all of the sudden. Give yourself a little break and come back to it when you feel less pressured. I take little HCM holidays from time to time, when i feel like i'm overwhelmed and my head is going to explode off my body, which i have to admit is more often than i'd like. LOL

          I can't speak to your surgery options. Since i'm not a candidate for ablation or myectomy, that decision's been made for me. You can bet that the folks in Boston will be on their toes for sure, and i would expect nothing but the absolute best of outcomes for Doug and the others. Doug's actually in an enviable position here when you think about it, going first in Boston and all. Certainly, nobody's going to drop the ball on the very first myectomies performed there. He's virtually guaranteed a successful outcome. (Doug, just thought i'd throw in a little pep talk for you there, buddy.)

          Of course if Doug comes out of surgery with a third nipple attached to his forehead or something... THEN you can worry

          Take good care of yourself!

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

          Comment


          • #6
            Re: I need support

            Hi Sarah , Jim, Thanks for your good advise I feel better today . I think I would like to go to Pago Pago ; it sounds like a never never land! I was thinking that everytime I think I have a handle on this horrible disease I am helplessly slung back into the grief process in just dealing with this monkey on my back. All that I was and so much of what I aspired to do see and be has been taken from my existance . I am left with a vague resemblance of who I was ,who I am now and who I am becoming and where the path will lead. I carry on as if trapped in the shadow with no way to connect with the body that casts the image. It sounds dark and dismal but it is the only way I can explain what I feel when hope and faith is tested and yet in spite of everything I must think positive and search out the answers. I know one thing , I am not alone and that sadly is comforting . Would that we could all share the common cold instead of this disease or shared having all taken a wonderfull cruise to an exotic island or better yet .... that we all shared the promise of restoration to our former health , our former selves. I thank you all for being there and Lisa I thank the higher power for sending you to Earth. Bye for now. 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


            • #7
              Re: I need support

              Pam, I just wanted to offer you a hug. I hope you take it slow and wait until you are ready to make decisions. Take care.

              Reenie
              Reenie

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

              Comment


              • #8
                Re: I need support

                Reenie , Thanks for your hug and advise it has helped. Today things do not feel so intense . Take care . 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


                • #9
                  Laughter

                  I have no medical comments, except an old bromide that I need to be reminded of at difficult times. forgive me for raising it if it is not helpful to you. I mean no disrespect.


                  Is there anything you can use at those difficult times?

                  Prayer? A favorite movie? Talking to a favorite relative or friend?


                  Laughter is my medicine. It gives me perspective.

                  I have re-discovered two great books from years ago:

                  The Letters of Lazlo Toth, and Citizen Lazlo.

                  They consist of "kook" letters written by Don Novello, who played Father Guido Sarducci in Saturday Night Live, and directed to our presidents and corporate leaders, many of whom responded.

                  When I received copies of the books from Amazon, I laughed for hours.

                  A dear friend of mine is dying of brain cancer. I stop over at his house every evening to make a few wisecracks. My friend smiles.

                  I use whatever helps me keep my balance.

                  Good luck.

                  Lee
                  [email protected]

                  Detroit, Michigan
                  Proud father of Andy, Meaghan, and Sean

                  medical research:
                  http://www.ncbi.nlm.nih.gov/PubMed

                  www.vivisimo.com

                  Laugh:
                  http://www.cbs.com/latenight/lateshow/top_ten/

                  Comment


                  • #10
                    Re: I need support

                    Pam -
                    Hey -I am glad you thought everything over and made some calls and are taking steps (not jumps) to feel better. I am very upset with your posting but not for reasons anyone has discussed yet. You medical care is YOUR business - well meaning or not your old doctor should NEVER have discussed your care with your mother, brother or ANYONE you did not authorize as your representative. HIPAA is very clear about your health information and who has a right to it, he was out of bounds here AND it sounds to me that he has upset you.
                    EVEN if your mother/brother wanted to discuss it with him -he should have said NO.
                    If and/or when you are ready to take a step toward surgury - then it is your choice and you will discuss that with those you want involved in your care.
                    Be well,
                    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


                    • #11
                      Re: I need support

                      Lee Hi thank you for your insight and I certainly will check those books out. Yes I too have always tried to use humor .I think sometimes I just need to get it all out and be cleansed that is why support groups like this are so beneficial ;it is safe and with people who understand the real issues and problems. I have always been intense with feelings and think that is how I was able to help others in the work I did in the past . In my adult life it is still difficult at times to nurture myself but I am learning. I quess 50 is still young enough to learn some new tricks. Hey Lisa , thank you also. You are certainly right about my old doc going way out of bounds . I have to question his motivation , could be , not too good for him to lose a patient to another hospital/doc. As well , he said a few not so nice things about the competition which I dare not repeat . So I see it as his problem. When a patient is suffering he should learn to acknowledge it and try to offer help not say," THERE IS NO MAGIC BULLET." I am far better off where I am with the touchy feely docs. Oh by the way I go to Boston on Monday to meet with Dr. Rastigar so I'll let you know. Take care. 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


                      • #12
                        Re: I need support

                        Pam,
                        How was your appointment?
                        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


                        • #13
                          Re: I need support

                          Hi Lisa, It went well; my son and I waited exactly 3!!!! hours to see him. I had to keep telling my son how important the doctor is and how valuable his time; he was delayed in surgery. When I met him for a moment I was distracted by my thoughts as I regarded his hands and the lives he has helped and the hearts he has touched with his hands. He had a calm and so very relaxed demeanor. I tend to get a little energized in stressfull or unfamiliar situations but I wasn't .He made me feel relaxed and calm and I envisioned that if surgery is my choice , I can confidently entrust my heart and put my life in his hands for the surgery. It was a good feeling and overall gave me the basis to make my decision. He said I should think about it , try to lose weight if I can (but was doubtfull that I would lose ) and call him back in about 3-4 weeks. We talked about losing weight to help reduce risk of complications. I am certainly going to try harder by being very cognizant of what goes in. I believe it will have some positive benefits. Keeping as busy as I can be inspite of my Hcm symptoms will also help keep my strength up and prepared for the physical challenge . He is concerned about my breathing; "the severe sleep apnea," and how it can effect recovery. It was a little scarey to have him graphically detail what could go wrong in the actual surgery. But as you say," knowledge is power." Now I can really begin to wrap my mind around it. ....So we'll see . Thanks for asking and I hope all is well with you. Take Care. 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


                          • #14
                            Re: I need support

                            Pam,

                            I thought it might help if you heard my story. When I first started having symtoms, almost 3 years ago, I weighed 368 lbs and was awaiting weight loss surgery. I had had 2 syncope episodes. They put in a defibulator and let me still have the bariatric surgery. The surgery helped alot. My sleep apnea went mostly away, I no longer take medicine for my diabetes, and for over a year I had no HCM problems.

                            Eventually I had 2 more syncope episodes and last August I had a myectomy in Cleveland. Things are not 100% perfect, just maybe 80 - 90 % better. I lost a total of 170 lbs but 20 have crept back on. I feel
                            mostly good, but still can get tired especially on hot days. For example, last Saturday we took our kids to an amusement park. It was very hot and after a few hours I started feeling very bad. I thought I might be getting dehydrated so I drink a ton of water and believe it or not felt much better about 1/2 hour later. A year ago we would not have made the trip. In the past, we may have left. This time a was able to recover.

                            I do not know if you would consider the bariatric surgery, or if you can wait about 4 - 6 months to recover before the myectomy, but it is one option that I truely believe works. One caution is to be sure you do the bariatric surgery by a very experienced specialist. Just like the postings on myectomies, sone centers/surgeons are better than others.

                            Hope this helps

                            Jerry

                            Comment

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