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  • newly diagnosed and frightened

    [newly diagnosed and frightened]

    Author: Stephen H (---.114.93.87.connectohio.net)

    Date: 07-19-02 15:57

    I am a 45 year old Fireman in a city in northeast Ohio and for the last 2 years I was getting winded easier and easier,it got real bad in my last housefire when I had to exert myself in high temps and I almost collapsed trying to catch my breath,I told the Chief that something was going on bad and he ordered the ambulance co. to take me in.They did an echo test then a stress echo then a rt& left heart cath.They told me that a virus attacked my heart muscle and gave me cardiomyopathy.My god they tell me to rest now but I had been working the busiest truck in Youngstown for 2 years like that.I guess I'm lucky that I know now I'm sick and my output is 50% but no rollover(new terms to me)I mean a doctor friend said you can live fairly normal with 45-50%,but I have just started to file for disability pension,they dont consider it an injury so I used up my sick leave and am working ultra light duty thanks to a good Firechief.(I'm getting a paycheck still)Im married my daughters are 11 and 13,I act brave and tell them I cant be a fireman anymore but I can still live to be old.When I'm alone I sometimes weep or if Im alone driving I cry like a baby but get a grip before others see me.I feel I'm losing part of my identity,Im not 200lbs of muscle I'm 170 and my clothes hang on me.I'm scared they wont award me enough % of my salary to support my family.I just started taking altace and the side effects are wearing off (I might get a cough I'm told)My cardiologist is very good so I'm lucky there but I feel like a pest cause I want to ask questions I forgot to ask him before and I've allready written him a letter telling him how important that line 4 ,line 10 of the forms were etc etc.I know that a lot of you guys have worse problems,am I losing it or is my mood swings normal for this change of life.I loved being a fireman so much and I was so good damn damn damn

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    [Re: newly diagnosed and frightened]

    Author: Sue (---.howard01.md.comcast.net)

    Date: 07-19-02 17:50

    Stephen--I think you are in a particulary vulnerable emotional situation because your job required extreme physical competency, you loved it, and you were very good at it. My job, for example, requires mostly sitting at a computer and talking with people. I love it and I'm good at it too, but I can do that at 50% or 100% of heart capacity. I don't like the loss of my exercise capacity one bit, but I'm not losing the central organizing principle of my life, just one of four or five important pieces. You will adjust, that's for sure. I would suggest that you might adjust faster and save yourself pain if you sought the help of a psychologist with experience in helping people adjust to loss. I'll be thinking of you and wishing you peace of mind and solutions that work for you. Sue

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    [Re: newly diagnosed and frightened]

    Author: Stephen H (---.114.93.97.connectohio.net)

    Date: 07-19-02 19:43

    Thankyou Sue,i have an appt. with my G.P. next Thursday,since he only recieved the results from the Cardiologist today.I was mistaken, my ejection fraction is 40% not 50%will that improve with rest and altace now that I am treating it the way it is supposed to be treated?I'll let him know what a rollercoaster I've been on,he's really a cool guy the nephew of one of the "old salts"on the department,and I was one of his first patients when he started his practice.Its all so new and the post I did I was pretty emotional.I guess this really is a grief issue with alittle stark fear and anxiety of providing for my family .I'm a brooder,my wife is great for snapping me out of it .This has got to be rough on her.Well I will count my blessings.

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    [Re: newly diagnosed and frightened]

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

    Date: 07-19-02 19:50

    Stephen,

    To start with my dad, brother and grandfather were/are all firemen/first aiders (volunteers), so I think ALL you guys are great for what you do and know that you are all very proud people.

    It is important to understand a few things - 1st of all your job - no matter how much you love it - does not define WHO you ARE. You are more then Stephen the firemen - and you know it. If you have to find other employment you can and you will be just as good if you try. While you have been diagnoised with cardiomyopathy (in your case dilated I will bet if they say it is viral), it is not safe for you OR those you are attempting to protect for you to be on the front lines. Your heart is weak and you will hurt yourself should you be in a position of stress or one that is physically demanding.

    HOWEVER- there are many things that are done behind the scenes that are just as important such as training, community education and other important parts of fire safety. When diagnosed with a chronic condition it is time to be creative with what you CAN do and not time to focus on what you CANT DO.

    Also I recommend a second opinion regarding your condition and treatment - -not that I think it is incorrect ... it is just a good idea to be cautious. If you are in Ohio you have a great center in Cleveland they are rated among the best in the world.

    In closing PLEASE know your not alone, it is OK to be mad - cry - or scream...for a little while THEN it is time to get your life back in order, make whatever changes you have to and get on LIVING your life.

    By the way your kids will love you no matter what you do for a living and EVEN if they see dad cry.

    Best wishes!

    Lisa Salberg

    HCMA

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    [Re: newly diagnosed and frightened]

    Author: Reenie Smith (---.snbrca.adelphia.net)

    Date: 07-19-02 20:38

    Stephen, I just want you to know you are not alone and most people go through the same feelings you're having now when they get a shocker of a diagnosis like yours. My husband was diagnosed with heart disease about two and a half years ago. For that first year everything was scary. First, would he die from it, then would he lose his job, will the kids get it (yours isn't genetic like his), and all the other horrible things you can think of. What I can tell you is that now we just take life a little easier and it is all working out. It just takes a while to adjust. It's like the steps they talk about with grief, you know, denial, anger, bargaining, acceptance. It will get better and you will feel better with a little rest. I'm glad you have a supportive family and crew at the fire station. Hang in there!

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    [Re: newly diagnosed and frightened]

    Author: Stephen H (---.114.93.52.connectohio.net)

    Date: 07-19-02 23:26

    The last fire I was at,the one that scared me to the ambulance,was a routine second floor bedroom fire,showing out two windows,me and the Lt.masked up,i took the line upstairs and he followed.The side door we entered must have lost its wedge and closed in pinching the hose.I ran downstairs to pull 20 ft of xtra line inside and was just gasping.....I managed to drag the needed slack to the Lt. but it was so hot I couldnt catch my breath and felt stark terror at my helplessness.we are a southside company and the fire was south so the other 3 trucks were about 3-4 minutes away still,I hung in there and Kenny got a good knckdown but the house was brick and insulated so it was hot and i couldnt breath.as soon as I heard the squad guys bringing another line in I bailed out and gasped for them to back up kenny cause he was now alone,I made it outside and told the chief something was very wrong with me and to transport me to the e.r.Some smartass ambu attendant told me I was having a panic attack....I've been in probably close to a thousand housefires and I said" no its my heart, it has to be".But I knew in those helpless minutes alone with Kenny that if anything happened I would be useless to him.I Knew that I was done being a Fireman,I would of gotten someone killed or been killed myself.but it was when I got the final diagnosis that my world changed.

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    [Re: newly diagnosed and frightened]

    Author: Stephen H (---.114.93.193.connectohio.net)

    Date: 07-20-02 03:25

    Thankyou ,Sue,Lisa And Reenie.I'm married to an independant ,strong and loving wife and I think I'm putting her through **** with my moodswings,She has never seen me as such a mess before.I feel that finding this website will help me vent some of my need to comunicate with someone when I'm alone and brooding,and save on phonebills(LOL)I love her so so much and almost feel I cheated her out of the man I was.After hearing from all of you I'm sure I will emerge from this almost frantic state I find myself in.Its been a week since he pulled the caths from my femoral artery and vein.I should be gratefull for the abilities that I still have.Now I will explore your website and see what I can learn.Sincerelly, Stephen

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    [Re: newly diagnosed and frightened]

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

    Date: 07-20-02 11:51

    Stephen -

    Hang in there... you may want to let your wife know about this message board, she may find some support here too.

    All the Best,

    Lisa

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

    [Re: newly diagnosed and frightened]

    Author: Board Moderator: Sarah Beckley (---.dialup.mindspring.com)

    Date: 07-20-02 12:33

    Dear Stephen

    You are not cheating your wife one bit ---the only way to cheat her, you, and your family is if you let the disease get the best of you. I don't mean ignore it, I mean that you should work on accepting it and developing a new career that draws on your experience without putting you or anyone else at risk. And, yes, I know how profoundly difficult this process will be. The hardest thing I've ever learned was how to let people help me and it has been one of the greatest lessons of my life. It is not a sign of weakness to be ill, it is a sign of strength and courage when you pony up to the challenge of re-framing your life around what you hold dear: your family and your health. They want you around, no matter what you do. Your daughters know you are the greatest regardless of what hat you wear.

    I know that it may be a long time before you come to terms with it; I know I was pissed off for about 15 years, myself. Not the whole time, but enough to screw up some stuff in my life. Lisa had a great idea and I'd like to add to it ---HCM is the leading cause of sudden cardiac death in the young and young athletes. Many communities don't have defibrillators in ambulances or in schools or in public areas and echocardiograms are not standard for varsity athletes. Those are two areas to look into, see if you can help make some changes ---still saving lives, just without the water.

    It is very courageous of you to let yourself cry ---that is a fantastic start towards healing.

    take care

    Sarah

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    [Re: newly diagnosed and frightened]

    Author: Glen (---.com)

    Date: 07-22-02 08:40

    Hi Stephen, virtually everyone of us with HCM have gone thru what you are now. I know my 1st year was **** because 30 years ago they knew very little about this condition and I was in constant fear of dying. I too have a very strong wife and with her support we got thru the scary parts. Several years ago she was diagnosed with cancer so now the shoe is on the other foot and we are still working thru that.

    Know that life is just one challenge after another and life has given you a big one. Also know, you may not think so now, but ultimately this will make you a stronger person and with a strong partner to lean on and pick you up both of you will get thru this.

    A year from now you will be posting your experience for someone else who just found out.

    Good luck and stay well.

    Glen

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    [Re: newly diagnosed and frightened]

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

    Date: 07-22-02 10:31

    Something a little lighter here...

    You ever hear the expression..." I feel like I am being tested."

    WHEN DO I GET THE SCORE!

    **** I think we all get A++ for the nonsense we have to endure everyday.

    Best to all,

    Lisa

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

    [Re: newly diagnosed and frightened]

    Author: Glen (---.com)

    Date: 07-22-02 10:44

    Lisa, Right on, I like that. It's so true.

    Thanks

    Glen
    NOTE: This is a post from the previous forum message board.
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