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  • Lost

    [Lost]

    Author: D (---.ph.ph.cox.net)

    Date: 08-27-02 22:55

    I recently turned 29 years old and have been battling unobstructed HCM since I was diagnosed with itat 10 years old. Growing up and throughout college I played some non-competitive recreational sports including baseball, football, hockey, etc. until I started experiencing problems with atrial fibrillation about 5 years ago. I quit sports all together but still played golf and I still do today. About every 6 months I have to go to the emergency room usually for some sort of arrythmia.

    When I was 23 they implanted an ICD in me and last year they had to replace it due to a bad lead which was causing it go off for no reason. The problem I am experiencing now is shortness of breath and irregular rhythmms after exercising mildly ie. golfing with riding cart, walking short distances. I have an appt. scheduled with my electrophysiologist in a couple weeks to take a look. Now I understand that I am not normal and that I can't do things that healthy people can but this problem is getting worse and worse very rapidly. Five years ago I was playing hockey in an ice rink and felt great. Now I can't even play 9 holes of golf without feeling terrible. I realize I have a bad heart but this disease has utterly consumed my entire life now. I give and give and give to this problem and it just keeps taking. It seems like every thought of my day is somehow connected to my problem and I constantly think that I won't make it to see 35 years old.

    I've seen many of the top doctors in the country (Mayo Clinic, University of Iowa, Arizona Heart Institute) and none of them can tell me anything concrete about what can be done. I was wondering if anyone else feels the same way where they feel like it will always get worse and worse throughout their life until it finally takes life away. I have read other posts and most people on here sound really positive with this problem but I am 29 years old, scared, frustrated, and nearly hopeless. Is there anything out there encouraging I can cling on to?

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    [Re: Lost]

    Author: Dolly W (---.proxy.aol.com)

    Date: 08-28-02 05:57

    Wow! I completely understand where you're coming from. I was diagnosed at 17 and had had symptoms as early as 10yo. Like you, I was fairly active throughout college and participated in sports that I probably shouldn't have.

    In the past five to six years, I have seen my symptoms worsening and was pretty depressed by it all. I too, thought that I wouldn't make it. Add to that the fact that my bio-dad died at the age of 31 of sudden death, and a paranoid Mom who thinks that I'm going to die young too! Well, I'm happy to tell you that I am now 39 years old and still ticking! It's not always easy, but a good (or sick!) sense of humor usually gets me through the tough times.

    Are you drinking enough water/fluids? I find (in my case) that I dehydrate rather easily and when that happens I usually end up in ER with multiple PVC's, etc. I didn't realize that the slightest amount of dehydration could cause this in me.

    I know how frustrating this disease can be, and I probably don't understand it any more than you do, but try to keep a positive attitude, it really helps. Visiting this web site is one of the best things you can do to help alleviate some of your fears and get great answers from Lisa and Sarah!

    Hope this helps in some way!

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    [Re: Lost]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 08-28-02 07:45

    Dear D

    I know I sound positive about having HCM on the message board...The fact is I have learned where my limits are where HCM wins and where I must learn to live with the situation.

    If you ...or anyone thinks I have any respect or affection for HCM well the fact is I HATE it more than words can ever say but I respect it for its power. I am looking for a comparison and I have come up with 2 - 1, it is like having brown eyes and wanting blue, you can put on contacts so the world sees the blue eyes you wish you had.. .but in reality your eyes are still brown and you know it. - With HCM we can put on a face to the world that says "every thing is fine, just look at me..dont I LOOK fine" but deep within WE know what is wrong and we each deal with it in our own way and in our own time.

    My 2nd attempt to explain my feelings about HCM is ...Well it is the ultimate challenge / competition, while I may not be an elite athlete I know my competitor as well as anyone can be expected to. I know her moves, I know her strengths and I know what she is capable of doing...SO I train and prepare for the game every day and every day I play I have played since I was 12 years old.... and so far for 34 years I have won every game...she has but in a few good blows and maybe even taken a round or two but so far I am I the lead...Yes maybe SOMEDAY she will win..but she has to wait a good 30-40 years before I will allow that to happen.

    Regarding your ongoing symptoms, please, do not panic it is not likely you will continue to decline in your health at any rapid pace. If you are not feeling as well as you think you should I suggest 2 things. 1. Get educated to the best of your ability on HCM – know you competitor - Understand just what is going on with YOUR heart – as we are all a little different-

    2. If you have not been to the Mayo in Rochester and only to the Mayo in AZ, I suggest you take a trip to Rochester NM as that is where the Mayo has its best HCM docs.

    You should make sure you are drinking plenty of water, avoid alcohol eat small meals as large ones can tax your system and reevaluate your meds with your doctors.

    So do not think your alone in your situation...we have all been there and we all have our bad days/cycles, the good news is we have lots to fight with..meds, devices, procedures, doctors, and yes friends as a team we can give it a great fight!

    So welcome to the HCMA - Welcome to the message board and I hope to hear from you soon.

    Lisa Salberg

    President,

    HCMA

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    [Re: Lost]

    Author: D (---.globalcrossing.com)

    Date: 08-28-02 10:28

    Hi! Perhaps the best thing to help right now is knowing the fact that I"m not alone in this battle. Don't get me wrong, I have kept a good attitude and shrugged off punches as they have come but for some reason I've hit a breaking point now. I had an episode last night that my doctor called slow V-Tach which really concerned me and I think led me to this point. I know I have an ICD to save my life but that thing hurts like mad when it goes off! You're right though, you have to take one day at a time and we will have good days and bad days but it seems lately the number of bad days is increasing compared to when I was younger.

    Two years ago I visited the leading specialist at Mayo in Rochester who proceeded to tell me to quit worrying about it and get on with my life. Believe me I have, although I've had to give up a lot of things except golf but now it seems that it will even take this away from me. I, also, get dehydrated easily and I suppose living in Arizona probably doesn't help but I drink water and Gatorade all day everyday now and problems are still occurring. I have even cut my meal sizes down. I guess it's amazing how much we have in common. When we have to think about the smallest things to take care of ourselves it is easy to think that we are alone.

    I really appreciate your reply and it does help to know that someone else is going through the same thing. I'm sure I'll make it through this event and perhaps the next one but it's exhausting thinking about what will be next. My friends and family are supportive and understand how frustrating this is for me. I really miss being active outdoors and exercising so what do you do for exercise and to stay in shape? I have always been somewhat active and liked to keep in shape but now I'm apprehensive to try anything. Thanks for helping me through and seeing that their is some hope out there

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    [Re: Lost]

    Author: D (---.globalcrossing.com)

    Date: 08-28-02 11:04

    Thanks Lisa for your reply. I really appreciate and it is comforting that even though each of our problems are slightly different we are not alone. The Mayo Clinic I was referring to is in Rochester. I was there when I was 10 and also visited a couple years ago. The leading HCM specialist didn't provide me with much information and I left there thinking I wasted his time which made me think that my problem isn't that bad. Times have changed . . again and will continue to do so.

    I do like your analogy considering this problem a boxing match and after taking blow after blow you still have enough power and strength to get up and fight back even harder. I have done that since the beginning but it's getting more and more difficult as I have to give up more and more of my life. Sometimes I think the problem is more in my head more than my heart I guess I do owe some retribution to this disease. I believe it has made me more compassionate towards other peoples' problems and of course it has made me a strong, persevering person. I have faith that I will get up off the mat from this blow and probably the rest until the final blow hits sometime over 50 years down the road I hope.

    Thank you very much for your reply and I will keep in touch.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Lost]

    Author: Amy (192.76.86.---)

    Date: 08-28-02 16:16

    I am sorry that you feel so bad, my soon to be husband has had this for about 11 years, he had surgery when he was 25 and now is 32. He was married in the past and lived a pretty unhappy and stressful life. We meet where we worked and we never thought that it would turn into anything since he had just gotten divorced and I had a few bad past experience. After we started dating and things got serious he told me that he felt the best he ever had. He started to go to the gym and lost about 30lbs. I am the "younger" women 8 years to be exact and I think that he thought he better look good for me. He is a great guy and seems to be doing much better since we have been together. I have a 5 1/2 year old son and if you know anything about kids at that age they go non-stop! He keeps up with Logan really well. Please don't misunderstand me there are alot of things that he can not do and the weather when it is humid makes him a little slower. Live life to the fullest and do the things that you enjoy doing. I think if your life is less stressful than it makes you feel better. In about 10 months we will be married!!! And to tell you the truth I would not trade him in for the world!!! My advice!!! Be happy and do what makes you happy you will feel much better as long as you are healthy!!!!

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    [Re: Lost]

    Author: Sarah B.-Board Moderator (---.client.attbi.com)

    Date: 08-29-02 02:55

    Dear D

    I'm 33 and was diagnosed at 13. I had a transitory ischemic attack (TIA) at 31. Since then, it has been all down hill. I know how you feel. I'm sorry that the Mayo was not more helpful to you --I had a great experience there, myself. However, it has been two years and you are getting worse and they are familiar with you, so it may be of some benefit to check back in with them. The research in HCM is moving very, very quickly and two years is a long time.

    Also, I want to point out that Gatorade is not all it is cracked up to be. First, it has a lot of sugar, which is not good. Second, drinking too much could actually throw off the natural electrolyte balance. There was a marathon runner who drank too much water and her sodium dropped so low her brain swelled up and she died (this is true --it happened just this year or last. I can send you the link if you want it). I'm not saying "dont' drink water" --I'm saying don't over do it. Try Glaceau Smart Water instead of Gatorade for your electrolytes.

    Part (and I mean part) of my take on HCM is this: Life is not fair. bad things happen to everyone. Everybody gets something --cancer, heart disease, MS, addiction, whathaveyou. If I had to pick something, HCM is not the the worst of the bunch by a long shot. All the silver lining stuff, I agree with and believe wholeheartedly, but you know what --I have all my fingers and toes, I can get around. I won't list for you all the horrible nasty things that other diseases do to the body and the brain, but if I had to pick something, HCM is stinky, but it ain't the bottom of the barrel.

    Oh, be sure you are not eating grapefruit or drinking the juice --interacts with heart medications and renders them useless. Also ginseng, chamomille and ginko interact with stuff. See my herbs posting.

    big hug

    Sarah

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    [Re: Lost]

    Author: chuck B (---.WLDF.splitrock.net)

    Date: 08-29-02 20:58

    D,

    I can truely empathize with you. The things you feel are very close to what I have experienced over the past 2 years. I am older - 52 - but went from a tournament tennis player one day, to a very restricted life the next. It has been very difficult to adjust to this type of life style especially since sports played such a large part in mine. You are relatively young and the body has remarkable healing and adapting abilities. For a while I worried that I wasn't going to make it, especially after my 5th hospital stay and an ICD that was firing and not keeping me out of V Tach. I have adapted mentally and physically and have learned and fine tuned what I can do and not do. I am now on amiodarone and coreg and the combo has semed to stabalize things. My ICD has not gone off and if I am having a good week I can even hit some tennis balls if I watch it. I was told I had very serious form of apical HCM at age 14 and never expected to live this long. For now, every day is a gift and no matter how bad it gets, I always believe it will get better tomorrow - and it usually does. Hang in there and be patient and wait for the docs to get the right combo of meds for you and learn where the line is that you cannot cross activity wise and I think things will get better for you - it did for me.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Lost]

    Author: Steve (---.proxy.aol.com)

    Date: 08-29-02 22:53

    D,

    Hang in there buddy. There are lots of us out here in this situatoin. The depression sucks when it comes,but I have found that with time a person does get more used to the limitatoins we must live with. I have the hardest time with the things I can't do with my family that I used to love, ie fishing, camping, walks on the beach ect.. But it always comes back to the fact I'm so thankful that I'm here and for all the things I can do. Sometimes it has to be broken down to the simple things we can still do that many can't, ie sight, touch and just plain feeling anything.

    I don't want to be a downer, I just know it can be hard and I find what helps me most is to be thankful more than regretful. As a preacher I once heard say "as long as you feel a pulse, there is a reason and plan for you to be alive."

    Hang in there and keep on truck'n. Steve

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    [Re: Lost]

    Author: tom campo (---.dyn.optonline.net)

    Date: 08-29-02 23:20

    hey d

    I'm 42yr old male.diagnosed at age 30.played sports till 38.started get lit chest pains and dizzness,more and more each time till the pain got real bad.called

    National Institutes of Health in (BETHESDA MD) they had me on (atenolol,verapamil) did not help.so I participate in one of there studies,on oct.1999 they did an (ALCOHOL SEPTAL ABLATION).this oct it will be three years,and fell great in fact two weeks ago I walked the the black course at bethpage(U.S OPEN) and walking other courses that I had a hard time playing with a cart now I carry my bag(COULD NOT DO FOR YEARS).and I still smoke and drink.(not to smart)so try N.I.H if you need help let me know(516 938 0167)

    good luck

    tom campo

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    [Re: Lost]

    Author: Sarah B.-Board Moderator (---.client.attbi.com)

    Date: 08-29-02 23:36

    Dear Tom,

    I'm very, very glad you had a good experience with the NIH. Many other people have not, sadly, as their primary focus is on research and not on treatment. Not everyone is a candidate for ablation, either, which makes a big difference.

    glad to know you are doing well,

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Lost]

    Author: Lisa Salberg (208.47.172.---)

    Date: 08-30-02 12:32

    Tom,

    Glad to hear you are doing well...but as Sarah said many of us have had out right bad outcomes at the hands of the NIH at least with the staff from 1992-present.

    The Wall St. Journal did a very large article on this on June 12, 1996 detailing the many protocol violations and deaths surrounding the HCM research at the NIH -

    Again, glad to hear your well but do be careful.

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Lost]

    Author: Pat (---.intrepid.net)

    Date: 08-30-02 15:52

    Tom,

    I am happy NIH worked for you. I went there for 12 yrs and thought I was in the best possible hands. When i got really sick, I found out how much they didn't tell me. Through my local Dr. I found my way to Cleveland, just in time. The only conclusions me and my Drs. could come to was that I was an experiment.

    As long as the same people are heading up the program at NIH, I wouldn't recommend it to anyone.

    Wishing you continued good health!!
    NOTE: This is a post from the previous forum message board.

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