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

Announcement

Collapse
No announcement yet.

Hello from Toronto

Collapse

About the Author

Collapse

Paul S Find out more about Paul S
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Hello from Toronto

    This is my first post, thus my introduction.

    I have been reading the board for over a year now, silently reading, learning, and amazed at how everyone provides great support and understanding.

    For those that hate to read long posts, my question of concern first. I CAN'T STAY AWAKE. The meds I am on have me falling asleep at work about 3 hours a day. Some days better than others. I have a constant cloud around my head, and always feel someone’s thumbs on my eyes, waiting for me to close them. Any information you have to share would be appreciated.

    Now for my details and history.
    I am 40 years old, diagnosed last year. My constant symptoms started about 5 years ago, then my stubbornness gave in and my wife convinced me to go get it checked out. I went to a general clinic to complain of Heartburn. Every time I eat, I am short of breath, and this is what I thought Heartburn was. If I ate light, or skipped a meal, I feel fine. Eat a normal dinner, and WHAMMO, I am done for at least 5 hours. The clinic had an EKG machine and they hooked me up to be sure. Well when that little tape started spewing out, the doctors jaw dropped to the floor and she looked at me and the tape a few times, asking if I was OK, and tell the truth, don't hold back.

    Off to the hospital I go, for 3 days, diagnosed with HCM, which the hospital knows very little about. My new cardiologist says he knows just the man to go see to get it all figured out. Dr. Wigle. Ends up that Dr Wigle taught my cardiologist everything he knows. I am fortunate to live in Toronto and be able to see Wigle just by hopping on the Subway. I have read in this forum of so many of you planning trips, taking vacations, just to see Dr. Wigle. Hats off to you!

    So thanks to you all and your posts and discussions, I am a little smarter, and knew exactly what Wigle was talking about as we discussed options.

    Wigle wants to put me into surgery, giving me a 2 month recovery time, due to age. So far I have not followed through with it, since I feel I am just symptomatic, not problematic. When it becomes more life vs death, then I will consider surgery. I am hoping time and technology will be on my side.


    It's been a year, and I do not feel better. In fact I feel worse, since the meds are now controlling me. I can no longer mow the lawn, without skipping a meal, and taking many breaks along the way. Being out of breath after exercise and feeling nausea is now part of my normal life. I have learnt, to adjust my eating habits, turning to small meals, to avoid the shortness of breath, or minimize it. I still dive into large meals sometimes, knowing the consequences, and living with it.

    Told you this was a long post Now for the Meds.
    Norpace 150MG, every 12 hours
    Monocor 5MG, once a day.

    I am told the Monocor (beta blocker) is the culprit to my Zombie life. Apparently Monocor is the most refined, and should not have a strong affect compared to others, yet it does for me. I was on Metroprolol at first, and I could not function, I was just a vegetable. Wigle changed me over to Monocor.

    Now I split the Monocor pill in half, and take the halves every 12 hours, hoping this helps.

    GPs are tough to find around here. Especially with a stubborn person like me who has never been to a doctor since I was a teenager. To me a doctor was a trip to the clinic, to get a prescription for a cold or flu. Health I was blessed with, but now caught up to me. I am searching for a GP that will take an interest in my case, and help with my sleep issues.

    Oh yes sleep issues, (so much to post, still with me? ) From the hospital I was diagnosed with sleep apnea, and forced (by my loving wife) to cooperate and get a CPAP machine for home. I was so angry and upset thinking I would have to wear this mask thing to sleep, what next!? 6 months later I am used to the CPAP and it works well. I am surprised how quiet it works. My wife sleeps a lot better now, and I get a great solid sleep every time. I do not feel energized and lively from the sleep, thanks to the sleepy pills.


    Knowing now what I have, and how it limits me, makes so much sense now. What I considered a norm as part of life growing up as a kid, I now see is caused by HCM. I was never good in Gym, yet I was skinny as a tooth pick. I could never run far. As an adult, I went to a Gym on a regular basis, and never had the Stamina to keep up. I could do anything I wanted, but never for long. I always thought that was normal, and wondered how others did it. Funny how the light begins to shine and you reflect back.


    So enough babbling for now.

    Hello from Toronto

  • #2
    Re: Hello from Toronto

    Hi, Paul,
    Thanks for letting us get to know you! If you have been silently reading for a year, I suspect you and I found this place about the same time. (But I am not silent! ) So, welcome! Your story certainly sounds familiar. There are a couple of comments I would make. First, I think that waiting to have surgery until it is a life or death affair is not really the best idea. As it is you are depriving your family and your job, and most of all yourself, of your energy. Secondly, I think you should not give up the search for a beta blocker that you can tolerate without sleeping all the time. Most of all, we are glad you are here and sharing with us. I am sure many others will have good insights for you.

    Rhoda

    Comment


    • #3
      Re: Hello from Toronto

      Hi Paul

      I'm glad you got knowledge from reading posts from many people that have experience and are very helpful, but then I am glad you are here.
      You didn't say what type of surgery Dr. Wigle wants to do?? A myectomy? Why would you put off surgery feeling the way you do? I know it is very scary to think about surgery, I was 20 when I had my first myectomy and I was shaking in my shoes and it wasn't even my first surgery! The unknown can make you want to wait. Did you discuss waiting with Dr. Wigle? Have you told him how sleepy you are? I too get very sleepy in the afternoon. I work during the week from 8:00 a.m. to 5:00 p.m. and I find if i relax for maybe 15 mins., then go outside for a breath of fresh air I feel much better.
      I know when I eat too much, I get tired and palpitations. I was told that I was putting a strain on my heart and I should eat more smaller meals that more at one meal and I am not a big eater to begin with. When my husband and I go out to dinner, I normally bring half of it home or leave it there.
      I certainly would talk to Dr. Wigle before making a final decision to wait for surgery.
      Please keep us posted.
      Esther

      Comment


      • #4
        Re: Hello from Toronto

        Paul - WELCOME!

        I will give you a rather short answer - if you want to feel better and myectomy has been offered - DO IT. You will be able to back off of your meds post procedure and that will help you a great deal.

        PLEASE take your life back - get the gradient down - the meds as low as possible and LIVE your life. You have a great doctor and seem to know that.


        If there is anything we can help with - please call the office.

        Best wishes,
        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


        • #5
          Re: Hello from Toronto

          I also agree that doing the myectomy is good idea. Before Felix
          had his myectomy he could barely make it thru the day! He would
          come home from work and had to lay down. Sat/Sun consisted of
          naps.

          now he has no problems most days. He sleeps much better as well.
          HAs lots more energy. It used to be on weekends that I would have
          to leave the house with the kids so that he could rest. now he comes
          with us. its so amazing. Yes, the 2 months post surgery were NOT FUN,
          but it was worth it for quality of life for our family.

          he also had the sleep apnea , but decided to go the UPPP route before
          doing CPAP.

          sandy

          Comment


          • #6
            Re: Hello from Toronto

            Hi Paul, Dr. Wigle has been my doc for over 30 years now and I would listen to him, I know when I talk to him he is pretty convicing so you should reconsider the surgery, or at least talk to him again, I am sure he told you the possible outcome if you do not have the operation.
            You sound like your quality of life is not the greatest right now and if you have been following the posts, it seems everyone who has had the procedure is very happy with the outcome, almost like being reborn for some.
            So reconsider the option.
            Last year I was on Atenolol, but it slowed my heart rate too much, so Dr. Wigle put me on Monocor as well. Our friends in the US would recognize it as Zebeta.
            He told me that if it also kept my rate too low, I should consider a pacer.
            My heart rate hasn't change much, still in the low 50s, so I am making an appointment to go see him soon.
            By the way welcome to the board, I live in Port Perry, on the Island if your familiar with the area.
            Looking forward to hearing of your progress.
            Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
            So if you are capable of thought then you are capable of great things
            Good luck and stay well.
            Glen

            Comment


            • #7
              Re: Hello from Toronto

              Yes get the myectomy you will feel much better, but just have a surgeon that has done them routinely, good luck and welcome to our board

              Shirley
              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

              Comment


              • #8
                Re: Hello from Toronto

                Paul,

                You wrote "I am hoping time and technology will be on my side".

                As far as a Myectomy goes, it is very unlikely that there will be any significant advances. The question came up at the Annual Meeting in regards to it being performed arthoscopically. The answer was No. The magic in the Myectomy is to have a visual of the enlarged septum and cut accordingly. My surgeon called it 'an art'. Doing anything that makes the septum harder to see makes the results less successful.
                I do expect that there will be advances with the Alcohol Ablation over the next 10 years but nothing that would make it preferable to a 40-50 year old.
                Drug therapies have always involved slowing down the heart to make it more efficient and give the HCM patient less symptoms. The flip side of that coin is that it can lead to fatigue as well. I do not believe we will have any significant advances in medications over the next ten years.
                However, you have only been on two beta blockers. Although I concur with the other posters that the myectomy is your best approach, if you choose to avoid surgery you should request different medications from your doctors. There is a chance they could make your life a little better. You have not tried Toprol (another beta blocker), or veraprimil (a channel blocker) or a combination of both (which can be tried).
                If you start thinking seriously about a myectomy and want some one to talk to, I can PM you my phone number.
                Fx

                Comment


                • #9
                  Re: Hello from Toronto

                  Hi Paul,

                  Welcome to the board!

                  It's a real eye-opener when you are finally diagnosed... looking back on all the times you 'couldn't quite keep up with everybody' and realizing now that there was an actual reason for it! If we had only known when we were in our twenties, huh? We might not have spent so much of our adult lives kicking ourselves for not being able to do all the things our friends could

                  I am 41 years old and just had a myectomy performed six weeks ago at the Cleveland Clinic. It has been an extremely positive experience for me and I honestly couldn't be happier with my decision to proceed with it. Open-heart surgery is not the easiest thing to face though, so i certainly understand your reservations. It's a decision you don't rush into lightly.

                  I was kinda sorta diagnosed at age 37 while undergoing kidney surgery and they noticed that something was 'not quite right' with my heart, but it wasn't until last year when my symptoms progressed substantially that i sought out the help of a specialist. Over the past year, we tried various combinations of beta blockers and calcium channel blockers, but nothing was effective in reducing my gradient or helping with my symptoms. Like you, the beta blockers were murder on my system... all i ever wanted to do was sleep all the time! As time progressed, I just kept feeling worse and worse until ultimately I ended up in congestive heart failure several months ago. At that point my docs and I decided that enough is enough... and I went to Cleveland to see a man about a myectomy.

                  Please don't feel that you need to wait to have a myectomy until it is a matter of 'life or death'. There are quality of life issues to consider as well, and right now it doesn't seem like you have a whole lot of that. You are still very young, and I think there is considerable merit in having the surgery while you are still in reasonably good health and are more able to have a smooth and successful recovery.

                  Yes, they've been doing myectomies for about fifty years now, but that doesn't mean that it is old and outdated... it simply means that they've had plenty of experience with the surgery and have gotten very good at it. I would take that option any day rather than wait for some new and experimental procedure that might not have the same track record of success.

                  Weigh your options carefully and of course make the decision that you are most comfortable with. Nobody here can tell you what to do, but we'll try to give you all the information you need to make the right decision for yourself

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

                  Comment


                  • #10
                    Re: Hello from Toronto

                    Paul,

                    You say you have been following this site for the last year. Then you know more about this subject then I do. I only found out I had HCM 4-5 weeks ago. I just found this message board 2 weeks ago. HCM, myectome...didn’t even know these words existed.
                    My wife & I tried for a week to shoot holes in what these people have to say. We couldn’t. Now my myectomy is scheduled for the end of August.

                    Take a step back and think.
                    You have found the BEST source of information on HCM. And IF you feel that a myectomy might be in your future…
                    You will never be stronger, younger or healthier then you are now.
                    That would say to me that not only will that make the procedure easier on your body - the stronger you are going in, the easier the body will recover. Less chance of complication and therefore a shorter recovery time.

                    Stuart
                    Cleveland Myectomy Club
                    August 31, 2004

                    Comment


                    • #11
                      Re: Hello from Toronto

                      Paul,

                      I, also, would tell you not to wait too long on the myectomy. My doctor has also talked to me about myectomy, and we are watching to see when it will be appropriate.

                      The reason I would tell you not to wait too long is that I watched my mother die from HCM, in 2001. It was not pretty. She had a doctor who, I believe, "watched" her into congestive heart failure, a huge blood clot in her heart, painful sores that wouldn't heal on her legs, and eventually, the near failure of other vital systems in her body. She did receive a heart transplant at the end, but did die within two weeks of that, because of a ruptured capillary in her brain. I think her brain didn't receive enough blood before the transplant, and then after the transplant, it was just too much for her. Long story short.

                      Anyway, I truly believe that if her Dr. had been more proactive, and had suggested a myectomy for her years before she declined so far, we might still have her with us.

                      For this reason, I left the very same Dr. that was hers, got one who is more proactive, and will not allow him to "watch" me into the same shape my mother got to. Believe me, we don't want to go there.

                      Take the steps to make your life your own, not just what the doctors tell you is available to you.

                      Comment


                      • #12
                        Re: Hello from Toronto

                        Debbie,

                        Your families history is very sad and I want to tell you and all other readers - these stories are why the HCMA is so important! I wish we were able to get the info to that doctor and to your mom in time to have helped her. I have lost 4 family members to similar misunderstanding of HCM, this must STOP.

                        Paul,

                        You are on the correct path and you have recieved a great deal of support on this string. If there is anything we can do for you please call the office.


                        Best wishes,
                        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: Hello from Toronto

                          Welcome Paul,

                          My mother died in 1996 of HCM. It was a long painful process to watch. When I was told I have HCM in Oct. 03, I did not wait long to react. With the help of the internet and the HCMA, my wife and I tried to find out as much as possible about HCM. I contacted the Cleveland Clinic in Feb. 04 and had a Septal Myectomy on the 17 of May. It was the best thing I ever did. I am still recovering but I can really feal a difference.

                          Please don't wait to long and trust the people on this site. It is experience talking when you read something on this site. Make sure you choose the right Dr. , at the right location.


                          Tigger1
                          " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

                          Comment


                          • #14
                            Re: Hello from Toronto

                            Thanks everyone for all your replies. Wow so much to read and learn.

                            I'm waiting for my next Wigle appointment, and I will follow through with the Myectomy if that is the road to take. You convinced me to stop being so stubborn EEEK

                            I will be in a tight spot with going ahead with the surgery, as I am pretty sure it will cost me my job. Sure they can't toss me because of the surgery, yet it will happen in the round about way to make it legal. Layoffs at work are all over the place. Currently I expect my ticket out in 1 year. Adding the surgery will just speed up the process.

                            I still have to fight the battle of staying awake. My search for a good GP continues.

                            The joys of life, you hang tight and bounce with it. I will keep you all posted. Thanks again everyone for your words of wisdom.

                            Comment


                            • #15
                              Re: Hello from Toronto

                              Lisa,

                              Thanks so much for your kind words, and for all the work you do for us all. It is invaluable.

                              I also agree that we must work harder to get the word out about HCM. It seems like so few people know about it. This site is doing a large part of the job.

                              Comment

                              Today's Birthdays

                              Collapse

                              Working...
                              X