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Jonathan tested positive...

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Bert Find out more about Bert
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  • Toogoofy317
    replied
    Re: Jonathan tested positive...

    Yes, Lisa you are right the psychologist I saw at Shand's is top notch! We still keep in touch and he has given me a great deal of insight on living with this condition! I did receive a call from him not too long ago and it lifted my day.

    Thanks to all of the wonderful people that make this place what it is!

    Mary S.

    Leave a comment:


  • Alison Whybro
    replied
    Re: Jonathan tested positive...

    Hi Mary, thanks for sharing your story - you have been through such a lot! I do understand how 'alone' you have felt with this at times. Up until a few weeks ago when I found HCMA via the net, I also felt alone. My 6 yr old daughter has HCM and I found it very hard not having people to talk to who understood how I felt and what it means to live with HCM in your family (like anything, you can't expect people to fully understand unless they have been through it or are going through it themselves).
    Meeting and hearing about other people's stories has been such a help to me - I don't feel alone with this anymore. This is what we are all here for - to listen and support each other!
    Thanks again for sharing and I wish you all the best - my daughter Anna is only six so people like yourself who are living with it at 22 are my inspiration!
    Keep in touch,
    Alison
    Auck, NZ

    Leave a comment:


  • Lisa Salberg
    replied
    Re: Jonathan tested positive...

    Mary -
    Thank you for sharing your story. I just want to comment on a few items - 1. the doctors at Shane's are not on the HCMA's list of top HCM centers - however this does not mean that it is not a good center. I just wanted to make sure people understood that we have nothing against the center, in fact the psychologist you met with is a good friend of the HCMA and I find his work to be top notch and very important!

    2. The attitude part is 100% correct in my opinion - however it takes time for each of us to learn how to include HCM in our lives.

    3. I am so proud of you and how you are taking control of your life and moving forward!

    Best wishes,
    Lisa

    Leave a comment:


  • Toogoofy317
    replied
    Re: Jonathan tested positive...

    I am going to put in some imput here! First of all Lisa that call was one of the most important calls of my life! Without that call I would have taken that doctors advice and lived my life however I wanted as she put it.

    I'm not sure how to put this gently but I'm just going to finaly tell my story out right. Some of you have bits and pieces of it from the past year but here it goes.

    First of all I was diagnosed with this condition when I was 21 just over a year ago. All through my life I have been very active. I was on the basketball team in high school and also did four years of NJROTC. I was an outstanding cadet. I did have a slight problem with running as much as I trained I could never keep up with the other cadets. Due to my scholastic aptitude and willingness I passed all my test The military offered me my wildest dream Med. School. However, I decided to take a year off from school to put my life together and make sure I am going down the right path. That decision probably saved my life.

    After, a couple of semesters of school I decided I wanted the military as my life so I enrolled for ROTC in college and was preparing for my dreams when this disease came full fledged into my life. I was at a friend's house and got chest pain shortness of breath. I called my doctor and he had me come in. He did a 12 lead EKG on me (it was abnormal). He told me that 30% of Americans have an abnormal EKG so it was nothing to worry about. My diagnosis from him was anxiety attack so I was prescribed Zanax, Paxil, and was given a shot of Valium and sent home. The next day at work I was talking to my boss and was overwhelmed with chest pain and shortness of breath. He called the ambulance but due to my anti-anxiety meds they did not want to take me for an anxiety attack. After, much begging and pleading they finally took me to the hospital where after five hours of waiting they finally hooked me up to an EKG and found the abnormalty. Things started going quickly and I was very scared I had no one to turn to except my boss (which I thank God everyday for bringing into my life). Do you know how scarry it is to be alone? Well, after five long days of testing in the hospital I was diagnosed with HCM. My GP still did not want to admit I had a heart problem. He told me women my age do not have these problems. Needless to say he is not my doctor. There went my dreams of the military and of medical school I was crushed.

    My local cardiologist is great but he did not have the expertise to treat HCM appropriatly. He was man enough to admit that to me and get help. So I was sent to Shands at the University of Florida. The cardiologist there was supposed to be an authority on HCM. I found out differently the hard way. She did a couple of echos and their's was different than the local so I was told nothing was wrong. I was even consulted by a cardiac psychologist to get me to understand that. This is where I found the HCMA I talked to Lisa and told her my story and found out that this doctor was not recommened by the HCMA. I learned alot that day. Well, I kept piddling around with this doctor and one day I was there and was having symptoms so what did she do but put me on the treadmil to see if they could provoc my heart into an arrythmia. When they were finished with me Lisa called out of the blue to see what was going on and I told her. After that conversation I started believing her about the need to go to a specialist. Well, as many of you know I am quite bull headed and I went along with on more test an EP study. BAD MISTAKE!

    My appointment was at 9 but was not seen til 4 when they did the test they were able to provoc the V-fib. I was still very much awake when they shocked me and there is nothing like feeling 300j going through your body. When all was over I had burns on my chest and was told the v-fib they provoced was not HCM related what they did would have put anyone into that rhythm. So an hour later I was discharged nothing for the burns and my leg hurt so bad I could barely walk. That was the last time I would go to that doctor.

    Finally, I went to my local cardiologist and gave him the name of a doctor at NEMC that I had gotten from the HCMA and he wrote the referral. I had to borrow money from friends to get up there and one of my friends were gracious enough to talk to his parents to let my stay with them. I saw the docs at NEMC and found out I did in fact have the HCM along with three risk factors for sudden death. So much for having nothing wrong with me. Three weeks later I got a defib implanted. While all of this was going on I was pursuing EMT school and somehow made it through. But that is when the harsh reality struck. Even though I made it through school I would never be able to handle the stress and physical pressure that came from it so once again I felt as if my life had been crushed yet again by this disease. As an addition I have been admitted to the hospital 18 times since March 2002. Mainly, because I did not beieve I had to take it a little easy. After all I was dealing with full time work, school, and this disease.

    So I guess the moral of the story is: Destiny takes each person down a different path sometimes it is a path we don't want to take. But, it may be the only path there is so make the best of it. Life is 10% life events and 90% of your attitude toward that 10%.

    Sorry it was long but I felt I needed to tell this story!

    Mary S.

    Leave a comment:


  • Lisa Salberg
    replied
    Re: Jonathan tested positive...

    Linda- thanks for your input - it was well put.

    To the rest -
    I have been following this string and private PM's from many of you about this subject - "Jonathan tested positive" and I would like to share a few observations, concerns and comments with the board.

    The role of the HCMA is to provide information and support (to name a few of our goals). Sometimes the information we share is not what someone may want to hear. The biggest area where we see "conflict" for lack of a better word is the area of athletics in a young person with HCM (and sometimes in older people as well).

    The HCMA does not "make the rules" nor do we tell people how to lead there lives, we tell people the what information is contained in the medical literature. In the area of athletics and HCM the topic is clearly covered in the medical literature - it is not compatible and is associated with increasing the risk of sudden death and may lead to disease progression. I hate this fact and in fact I hate this disease more then most. When I was 12 years old I was unable to participate in events I wanted to because I had HCM - I was angry - I was hurt and therefore I do understand the pain maybe more then some of you could ever understand - -this is not a contest as to who hurts more or who has lost more, we all just live our life’s as best we can with the hand were given... I was given HCM...so were you and your families.

    This thread is not about only Jonathan - but here in my view Jonathan represents many children, many people with HCM. This is a complicated disease with many questions yet to be answered - -this is not something anyone with any disease wants to hear. We simply want a cure - but we cannot have one. I do hope someday that we will - but it is not going to happening in our life times.

    Further, As many of you know I do call people from time to time just to say hello and see how they are going (a classic was Mary...who posted how my timing could not have been better as I called as she was leaving the hospital after her Cath!). If my timing of a call to check in upset you Bert, I am sorry, but I was concerned.

    For anyone who has been to a previous HCMA meeting they know the style of the meeting is nothing close to "group therapy" - it is extremely professional and in a seminar structure. You can spend as much or as little time with others as you want.

    Best wishes to all,

    Lisa

    Leave a comment:


  • Linda
    replied
    Re: Jonathan tested positive...

    I have two sons. Both played the usual sports, T-ball, baseball, soccer, in their early years. One son was eliminated from team sports after the diagnosis of HCM. The other son was eliminated from the high school team sports (with exception of 2nd string football) because he couldn't make the team. It was no less devastating for the non-HCM son than it was for the one who has HCM. I really think it was much more difficult for him because he had no "really good" excuse. "Maybe you need to practice more, maybe you didn't work hard enough, etc". The bottom line is that not everyone has those skills or stamina to become a first string player. For a child who was sure he would be a pro soccer player, this was a major blow. Had my other son been able to continue to play, he prob would have made the team. It was quite acceptable for him to no longer play, he had a "heart problem". Which son was hurting more at the time? Who knows, I just know that I hurt for both of them. Now, both enjoy activities they are comfortable with and good at, both doing well at achieving healthy lifestyles. As parents it is our job to help them through these rough times. There will always be some obstacle. Maybe they won't get the college they want, maybe someone else will have their loan approved on the house first, and they get the little home you've dreamed of for years. Somehow, we cope with disappointment, get through it and move on. Bert, you've been with Jonathan every step of the way, and somehow, you and your family will get through this. Your son does not need to give up "an already healthy lifestyle". However, he will need to adjust it to what is now a safe and healthy lifestyle for him. It's just one day at a time, and when you are having a "mad" day, it's OK. Everyone needs a "mad" day now and then. But remembering all the good things in our lives is important to help keep things in perspective. We have many people on the message board who have found us only after the tragic loss of a loved one. They are seeking and receiving support from others who understand. They are very anxious to prevent a recurrance of this horrible tragedy in their families. I have my own private celebration every time I read a post from a new person who has found us because they need info for a newly diagnosed loved one. This is great news to me, because they have a chance for life-saving treatment. It will take some time to find the best overall plan for Jonathan, both medically and in his everyday life. Every day will bring new information, discoveries, and changes for you. There will be days when it seems as though he may be the one helping you through, and that's fine too. We all need to have our strong days as well as a chance for the weak days. My thoughts and prayers are with you, Jonathan, and the family. Linda

    Leave a comment:


  • Sarah
    replied
    Re: Jonathan tested positive...

    Dear Bert,

    The point I was making is that life is a journey (cliched but true). I was living a healthy lifestyle and I could have chose an unhealthy one (it was very tempting), but having HCM helped me to stay on the healthy road. Most HCMers live a full life span. Personally, I don't have to play competitive sports to have a wonderful, active life.

    No one is suggesting you celebrate your son's HCM. Some very caring, supportive people are trying to show you the silver lining in a dark cloud. You obviously have chosen not to see it, but that is your perogative. I only ask that you not be rude to the people who are trying to help you and your family.

    Your "group therapy" comment is just uncalled for. HCMers have a very hard time finding others who understand what they are going through, and this is a great way to meet other interesting people who have gone through the exact same stuff you and your family is/has. You are not the first and only person to agonize over letting your son play sports or to have had a bad experience with a doctor/clinic. If meeting those other families and learning from them is "group therapy" to you, then so be it. However, I don't think you meant anything positive in your reference and I think many parents are very grateful and happy to meet others in their shoes.

    That alone would be enough to warrant attending, but Lisa brings in doctors from all over the US to talk to the HCMA about the latest treatments, procedures, and on-going research. It is an incredible experience that is unavailable anywhere else.

    Please don't disparage the meeting just because you are angry at the medical establishment. The HCMA is here for you (whether you believe it or not) and you can choose to take advantage of what it has to offer, or not. Your call. However, if you attend the meeting and think it sucks bigtime, then by all means, post your opinion here so we can discuss it.

    Thanks,

    S

    Leave a comment:


  • Bert
    replied
    Re: Jonathan tested positive...

    I like the "silver bullet" metaphor. Had it not been for HCM, one of those would have gotten you. Although I truly understand how it might have saved your life, I fail to make a connection between giving up drugs and alcohol and giving up an already healthy lifestyle, unless, you mean there at both ends of the spectrum, thus the connection.

    HCM has managed to save your life because you were headed down the wrong path, while HCM may take my sons life because he chose a life that was based on healthy choices and substance free. Now that things have changed, I guess the only thing left to do is celebrate!

    Unfortunately, we won't make the meeting as Jonathan is not really into group therapy. Besides I've spent a lot money lately commuting to Boston for a series of tests. The Theater District of Boston is not cheap for overnight stays and we've been spending a lot of money lately. At least we found a nice little restaurant called "Rock Bottom". The food is excellent and best of all they brew their own beer. I love microbrews! All in moderation of course...

    Talk to you sson, and best of luck.

    Leave a comment:


  • Bill
    replied
    Re: Jonathan tested positive...

    Hi, Bert:

    I think there might be more of a parallel here than you realize.

    I don't feel that HCM provided a "silver bullet" for dealing with an addiction; at the time that all this happened, the alcohol issue hadn't really come to a head. I was simply drinking more than was healthy (make no mistake, I WOULD have gotten there, no doubt in my mind about that.)

    It's more that HCM forced me to actually think about what my life was about and make choices that were in my best interest, instead of just doing what seemed to feel good, or what I simply WANTED to do all the time.

    I'm not religious, but I sort of got the feeling that HCM was God's way of tapping me on the shoulder and saying," Uh, Bill, there's more to life than drinking too much, you know."

    I don't know your son or the details of his condition, but he's probably going to have to make some changes in his life. That can be a source of grief (which I hear in your posts), but it can also be a source of celebration if you let it.

    Good luck to you both.

    Bill

    -- Are you coming to the June meeting?

    Leave a comment:


  • bryan
    replied
    Re: Jonathan tested positive...

    Bert,
    I understand you about the addiction to athletics and wellness, sports was my life. At the age of 13 I was taken out of competitve sports and it CRUSHED me. My cardiologist at the time would not clear me to play football. I got home and ripped up the form he filled out and told my coach, I needed a new one cause I "lost it". I then went to a health clinic and told them I had I murmur and they cleared me, no questions asked. Obvioulsy I could not do this with out the okay from my parents. My mother at the time felt bad for me and her line was " she would do whatever made me happy." When we talk about it now she kicks herself in the a** for the decision. Not because anything happened, but because what could have happened. I sit and think about it now that I know a little bit about HCM (thanks to this website) and think to myself, that my selfishness was not worth it. I might have been happy at the time, but how would the people who cared about me feel if something was to happen to me? I wish Jonathan and your family the best of luck with whatever decisions are made.

    Leave a comment:


  • Bert
    replied
    Re: Jonathan tested positive...

    Dear Bill and Sarah,

    It's so great to hear that HCM has been the silver lining in your lives. Bill, sounds like you had some serious substance abuse issues that were resolved by HCM, that's fantastic! Sarah you knew enough to exercise self-control and that's also a wonderful story. I see your point but unfortunately I can't relate. The addiction in our family is athletics and wellness which seems to have kept us away from that particular lifestyle. I guess whatever works is what you go with. Life has strange way of expressing itself, doesn't it? Keep up your good habits, and Bill I pray that your grand-daughters will be HCM free.

    Leave a comment:


  • Sarah
    replied
    Re: Jonathan tested positive...

    Dear Bill,

    You make a great point and one that I don't think I've shared on the board. I am quite positive that having HCM has kept me from becoming an alcoholic and from trying hard drugs. I've always known that experimenting with drugs would probably kill me and alcohol wouldn't be too far behind, so I've assiduously avoided them both --much to my relief. The few times I did drink, it was bad enough to keep me from trying again.

    Just being around cigarette smoke (even outside) is unpleasant enough; I can't imagine smoking a whole cigarette. I had maybe two cigarettes in college once and the next day I felt like that crud on the bottom of an ashtray. Once, I was in a hotel room where people were getting stoned and I had to stick my head out the window to breathe, and I had tachycardia. Yucky.

    HCM stinks, but being addicted to coke or alcohol or cigarettes are all bad and potentially deadly, too. And it means I got to meet all of you!!!



    S

    Leave a comment:


  • Bill
    replied
    Re: Jonathan tested positive...

    Don't know whether you'll find this helpful or not. In fact, I'm not sure how this will even come out because I've never expressed this before.

    When I first started dealing with my HCM symptoms more than 30 years ago (and had no idea what they were) I found I had to make changes in my behaviors just to get through the day. Caffiene seemed to bother me, so I switched to decaf; my two packs of cigarettes a day seemed to make things worse so I reluctantly gave up smoking. Beer and bourbon, which I liked a LOT, seemed to make things worse too, so I gave that up as well. At the time, all of those things seemed like great sacrifices.

    Living with such a clean-living guy led my wife to give up cigs and alcohol as well (we both had family histories of alcoholism -- my dad died of cirrhosis at 54). No longer drinking, we realized we had been on a bad track and felt very lucky that the pattern had been interrupted.

    When my daughter encountered drug/alcohol issues in her teens, our sobriety helped her (and all of us) get through it. She's been sober ever since and is now a successful nurse and med practice manager.

    There's been no tobacco or caffiene in our house since 1977, no alcohol since 1984. More important than that fact, though, is that I and my family view life a lot differently -- and a lot more positively -- than we did in those old days, when we were just sort of churning through life, routinely medicating to get up and then medicating to get back down.

    I don't enjoy my symptoms, and I am very saddened at the thought that my two young granddaughters may have to deal with a disease that I passed on to them.

    Still, in a way, HCM has been the greatest blessing of my life.

    Leave a comment:


  • Sarah
    replied
    Re: Jonathan tested positive...

    Dear Bert,

    I guess I should have said "one of my favorite moments when I was _in_ an ER" as I've been to them a lot. I did recover 100% from my stroke, but am in permanent afib.

    Yes, someday pigs will fly and I hope to be around to see it.

    S

    Leave a comment:


  • Bert
    replied
    Re: Jonathan tested positive...

    Dear Sarah,

    I'm actually sorry that one of your favorite experiences was a visit to the local ER and Cardiac Care Section. I'm assuming it was for a reason and obviously I'm glad that things worked out for the better.

    If you read my post, I too agree with the "more heads the better" concept. It is definitely an approach that makes a great deal of common sense. I certainly hope physicians continue to share their knowledge in order to make advances in their field. Who knows? Perhaps some day they'll even make more advances with HCM, and we'll literally see pigs fly. Take care.

    Respectfully yours,

    Bert

    Leave a comment:

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