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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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  • New Member Story

    Well I think it is time for me to stop being a reader and show some participation. So here goes. My name is Pam I am 49 ,soon to turn 50. I was diagnosed with HCM , with the obstrution in Nov. 2000. It was a long and rocky road I traveled. If it had not been for my then age 14 son and his tutorlidge on basic computer I am not sure how I would have made it this far or if I would have even been still on this planet. With much persistance I was able to find this site as it had been originally formated back then and many other sources of information as far away as Australia. I guess I was continually searching , back then to tell me that none of this could possibly be true. I was so very grief stricken for myself and my family and still revisit those original feelings from time to time. I reached out once to Lisa S. well over a year ago and then I pulled back like a clam in a shell. I have watched and seen and still see all the kindness warmth and sharing that you all give to each other. This site truely humbles me and reminds me why we are all here on this planet. I spoke to Lisa recently and it was as if I had always known her . She has helped me to see that I needed to move on and seek another set of eyes in regards to my case. I had the unfortunate situation of having a mis in my diagnosis for probably all my life. Basicly via the internet and my smart boys help I was able to read tons and find my way to Boston for help. I thought I was at a specialty place and that my needs and care would be well partnered for the rest of my days ,I was wrong. Eventually after sorting through my life and history an affirmative diagnosis of HCM was made and I was then 4months later implanted with an AICD. I really believed that this was the beginning and it felt that way. I was told that the AICD was just to help prevent sudden death and it and the pacer would not change the seriousness of my heart condition. And they haven't . The day I was diagnosed it was assumed that my pcp/cardiologist had made the referral and that he had already told me of the diagnosis and the seriousness of my condition, he hadn't. The realization of all my worst fears through my own persistance and digging smacked me in the face like a shovel. All I could think of was my 72 year old mother out in the waiting room and how was I going to tell her I !!! was right. All my friends and family had told me it would be fine that I should stay away from the internet and it was like when you go to nursing school (yes I am a nurse) and study all the diseases ,you think you have what you are studying. Sadly I wish it had been so. Well that was the last day of my career;it was viewed that due to the severity of my symptoms and findings that I really was not safe doing any strenuous labor. Even with that I had to hire a lawyer show up at Federal Court and after 15 minutes the judge ascertained from the government cardiologist that I was permanently disabled and we did not need a hearing to find that out. Yeah I still had to pay the lawyer. In the end it is financially devastating for a single parent of 3; 2 in college and 1 in high school to be on disability .Well that brings me to the last 2 years that I have been told that there is nothing that can be done to help me and I would have to be at the end of my rope in order for even a discussion to occur. The only explanation being that my condition was too severe and interventions were too risky for me. It was my son having a meltdown while in Florida while on a trip with cousins and his sad phone call home that sent me to my records to review once again. The next night I returned to the HCMA site and then called on the phone...Lisa answered. Her insight and knowledge warmth and kindess her advocacy everthing that night from Lisa gave me hope and a glimmer that just maybe I might possibly see a tiny bridge to a life I was once so strongly an active part of. You can imagine I was scared to even think about it. With Lisa's involvement and supportI was able to go to a real HCM center TuftsNEMC in Boston . What a wonder full experience from the very beginning when I had my echo I felt that this is where I belonged The doctors are god sends .I think they were very excited that I knew alot and had done my home work . One thing is sure I had not kept current and did not know that this center opened a year+ ago and is just an hour away. Thank you for being here so that I could give my children hope again. I am still very concerned about my kids there are suspicious symptoms in all three They will be re-echoed as we proceed (they were all done 2 years ago at the place were all the originall goofs were made so there is not much cofidence with that ) First thing is I am titrating up on my atenolol from100mgs bid to 150mgs bid and will go up again on may 19th ,then I will plan a trip back to Boston to speak about myectomy or ablation as the doc said I am a candidate for either. My septum is 18mm but he said the surgeon said it is doable. My resting gradient is 70 and that number varies . On manipulation it goes very high 200,240 +. My quality of life is not good my attitude is almost manic at times and I try always to see a positive when a negative presents itself. I have severe sleep apnea , use bi-pap machine at night have hyperinsulimia, well controlled on oral antidiabetic med. ,have CHF and take Lasix 120mgs to160mgs depending on the day weight and vital sign .Also take ditiazem180mgs daily .I am also 100% paced all the time .I guess I am going to have some serious decisions to make but I welcome these options. I read the article from Esquire about alcohol ablation is there a similar article for myectomy? I am also reading all the wonderfull information from those of you who have had the experience thankyou. Does anyone feel a sort of spasm sensation in their lower back lung area from time to time. I almost wonder if it is like the chest pain is to the heart, the ? spasm akin to small areas of the lungs not getting fully perfused? I am sorry for the length but I guess I had a lot to get out. Any help would be very appreciated. 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

  • #2
    Re: New Member Story

    Dear Pam,

    Thank you for sharing your story with us. I'm so glad that you were able to re-connect with Lisa -she is an amazing person.

    You have a lot on your plate; I know that the NEMC team will do their best for you.

    As for more info on a myectomy, please read the rest of this site (not the board, but the info) and also there is a section in Lisa's book about them. The NEMC team should also have some literature that explains the procedure. You can also search the message board for posts about myectomy and ablation to see how other people went through it.

    I'm afraid I can't answer your other medical questions, but I look forward to hearing that you are feeling better.

    take care,

    S

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    • #3
      Re: New Member Story

      Hi Pam,

      Welcome & I'm glad you found your way back!! It sounds like you are on the right path now...physically and emotionally.

      Thank God for our children!! Your son's trip to Florida and his 'meltdown' was the driving force behind your recent positive actions and thoughts. He got the ball rolling and you ran with it!!!! We'll do anything for our kids!

      This disease is frightening at times, I agree with you there!! You can't go it alone, it gets too hard. You have a community behind you...just a click away. We are all here for you Pam for whatever questions you have or if you just need to vent!

      Take care,
      Karen

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      • #4
        Re: New Member Story

        Hi Pam,

        Doug here. Thank you for posting your story. I am in similar situations as you are actually. I am also about an hour away from NEMC Tufts as I live in Milford. I work in Charlestown at Harvard so I go right by NEMC everyday. Actually I am lucky to be working still with this disease. I still manage 40 hours a week but only because I spend my day sitting at a microscope. The hardest part for me is the train ride in and the commute home.

        I am also under the expert care of the team at NEMC and am meeting with Dr. Kimelsteel (SP) next wednesday to get the lowdown from him on Ablation. He actually does them if you haven't already learned that from Dr. Maron or Dr. Udelson. And then I meet with the surgeon who does the myectomy procedure. I, like you, have a huge decision to make very soon. Drug therapy has been unsuccessful so medical intervention seems to be in order soon. I would be pleased to stay in contact with you to see what your decision will be.

        Good luck and maybe our paths will cross one Tuesday at the clinic.

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

        Comment


        • #5
          Re: New Member Story

          Hi Pam,

          I know what you've gone through on this journey. I too have been through many doctors and diagnosis. Even when they diagnosed me with what was then called IHSS, they did not stress the importance of a change of lifestyle.

          Through research on the internet, I found the HCMA and Lisa. She started the ball rolling and I had a myectomy at Mayo in October of 2002. You said in your post that when talking to Lisa, it was as if you always knew her. I feel the same way. It's as if she knows who's calling, and she's known you her whole life. Great to have such an advocate, isn't it? Thanks Lisa!

          I'm not going to tell you that myectomy is a cure, nor is ablation, BUT it has made a world of difference in daily life! Between that, and being able to get off of the ton of meds I was on, I feel 90-95% better than before. I still have bad days, but they are fewer and further in between.

          I too have been diagnosed with hyperinsulinemia, in my case, the oral hypoglycemic agent didn't work for me. However, I have noticed that since my Inderal and Verapamil were discontinued, I've had fewer episodes (not sure if there is a relationship there).

          Just wanted to wish you the best, and if you have any specific questions on myectomy, just send me a PM, I'll be glad to respond.

          P.S. I didn't forget about the rest of you guys, thanks for all of your help too!
          HOCM, Septal Myectomy 10/02 (Mayo Clinic), Medtronic ICD 10/07, TIA 10/07

          Comment


          • #6
            Re: New Member Story

            Hi everyone , thank you for all your excellent responses and for reading my very long story. Yes I do have the book written by Dr. Maron and Lisa, I'm trying to digest it slowly. I should have gotten it a long time ago. It was a Mothers Day gift from my children along with the membership to HCMA. They are great kids.
            Thank you Doug. It will be great to hear about all the information you recieve on your visit in Boston Wednesday. I also want to know all the real details spare no graphics. I hope to meet you in Boston some time. Take care 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: New Member Story

              Pam - Thank you for sharing your story. Yours is a rather common situation - many people call and we chat - then it may take a while to fully digest all the information and believe that YES there is hope! Then the step is made to help and a better quality of life!
              Thank you for the kind words - you made me cry ...happy tears. I wish you much success in your treatment.
              Oh and kids are great! What wonderful boys you have!

              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

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