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How do I help hubby deal with this?

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  • How do I help hubby deal with this?

    [How do I help hubby deal with this?]

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

    Date: 06-07-02 07:52

    Hi Gang...

    Could use your input on this subject.....my hubby is swimming in the river of DE-Nial! (as Lisa put it!)

    He just about freaked when I told him that we need to go to Cleveland to see a specialist. (We live in Central Florida) He wants to go for a second opinion with a dr. here. I personally think that would be a waste of time....he was misdiagnosed for so long - we NOW have a true diagnosis. So, what would be the point?

    I can't seem to make him understand that the cardiologist here did NOT give him good advice, nor does he know how to treat this. (The doctor told him meds probably won't help, and that his heart will eventually "blow out") I think that hubby feels he has been given a death sentence.

    Every time I try to talk to him, he doesn't want to discuss it. We don't have all the pieces of the puzzle yet - waiting for heart halter results, family screenings, etc.

    I'm not trying to scare or alarm him ....actually, I'm trying to do the exact opposite.

    I realize that it's a different perspective for the sufferers, than for those who don't ...we are still in the 'adjustment period' since he was diagnosed about 2 weeks ago.

    Aside from educating myself and taking care of all the particulars, what else can I do to offer my support and help him deal with this?

    I have friends I can talk to for support (YOU included!) but he has no one except me.

    Your suggestions would be greatly appreciated!

    Karla

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    [Re: How do I help hubby deal with this?]

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

    Date: 06-07-02 08:55

    Karla,

    I would strongly suggest a few things...1 move slow - this is all new to both of you. 2 give him room to deal with his own feelings, You both have to deal with the diagnosis, maybe you are coming to terms a little faster then he is. 3. get him on this message board, let him see he is not the only one who lived with years of misdiagnosis (you and I discussed his previous diagnosis, which I will not get into here), he has a great deal to deal with... he needs time.

    Many people do not realize how few doctors treat this condition regularly, and honestly it can be rather confusing as we are all raise to believe "Dr knows all", when in fact no person is all knowing and Dr's are people too! Most doctors recieve limited education in the area of HCM, and see very few patients with the condition... how can we expect them to know all??

    This takes time for people to fully appreciate - take a deep breath and move slowly...he will come around.

    All the Best,

    Lisa Salberg

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    [Re: How do I help hubby deal with this?]

    Author: Martha (---.eonet.net)

    Date: 06-07-02 10:02

    Karla,

    I was just diagnosed last week with this and I can't begin to tell you the effect it had on me. I saw my girls look at me in a different light. They wanted to HELP me to a chair, they ask, 'should you do that?" I SEE the difference in the way

    my close friends treat me. I know they love me but it's different now. I don't

    WANT it to be different.

    What Lisa said is so true. Give it time. Give him time to ask for your help.

    My heart goes out to both of you because I'm female and relate to you but I'm

    the PATIENT and I relate to him. I just found this website yesterday and spent

    hours reading everything I could. Maybe that would be the best thing for him too but don't force it. Just tell him it's here. Give him the URL and when he's ready maybe he will look it up.

    I'm just so thankful I found this information!

    Martha

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

    [Re: How do I help hubby deal with this?]

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

    Date: 06-07-02 11:40

    Hi Martha -

    I too am happy that you found us and thank you for sharing your thoughts. You bring up a good point, men and women deal with diagnosis differently... We women, well we like to talk about it and hope it goes away, and men, in the begining, use logical thinking and staying quite and hope it will go away. We are both right and wrong, staying quite may be right for some, others need to talk...but it is not going away, it is your new "normal". We each have to come to terms in our own time and respect each others way of getting there.

    Communication is key to quaity of life...so please communicate however you feel most comfortable!

    JUST remember your not alone!

    Lisa Salberg

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

    [Re: How do I help hubby deal with this?]

    Author: Matthew Jesaitis (---.disney.com)

    Date: 06-07-02 11:44

    Karla,

    I too live in Central Florida. I've been here for almost 5 years now and haven't felt comfortable with any of the 5-6 cardiologists I've seen since I've been here. My symptoms are getting worse and the only thing they've ever done was to increase the medications I'm already taking (primarily the diuretic for my congestive heart failure due to chronic A-Fib). They have also given me some bad advice.

    The good news is that I too have recently found this site and talked with Lisa and went to the meeting... I now have an appointment to see one of the specialists she highly recommends (Dr. Maron in Minneapolis) in the end of July and you wouldn't believe the security and peace this created for me. I was also severly depressed. Thinking I was going to die and there was nothing I or anyone could do to stop it. But now I know I'm on the right track again! If the doctors know what they're doing and you know how this disease affects you, your quality of life will be as good as anyone else's (and maybe better because we realize what a gift life is). I guess it boils down to "knowledge is power".

    Hope this helps.

    Take care. Matt

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

    [Re: How do I help hubby deal with this?]

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

    Date: 06-07-02 11:58

    Hi Matt!

    It was great to see you at the meeting... You know I think you should email Karla directly... I think you and her husband share an employer! You may even know each other!

    "It's a SMALL WORLD"...sorry could not help that one..ha ha

    Lisa

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

    [Re: How do I help hubby deal with this?]

    Author: Lynn S. (---.dsl.dytnoh.ameritech.net)

    Date: 06-07-02 13:12

    Hi Karla,

    I was just diagnosed with HOCM in April of this year and struggled to come to terms with the diganosis. My husband however, immediately began making phone calls, posting messages to this board and making an appt for me at Cleveland Clinic. The result...well, at first I was taken back by his "enthusiasm" but he gave me time and space to sort through my own shock and grief. (If you make an appt with Cleveland Clinic you will probably have some time, we've had almost 2 months, before the appt and during that time I finished coming to terms with things). Upon joining the HCMA we quickly received an entire packet of information in the mail and I have read everything and now am as 'up to speed' as my husband. He presented me with this website and message board and in my own time I've spent reading entries; eventually I was able to admit to myself that the symptoms I were having were shared by others and I was reassured that I was not 'alone'. So my best suggestion is that you maintain your quiet persistance in helping your husband by presenting him with knowledge (as Matt said above, it's power) and he will come around; he will see you coping with everything and it will give him reassurance to accept and move forward.

    Hope this is helpful,

    Lynn

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

    [Re: How do I help hubby deal with this?]

    Author: Jerry Groves (208.220.74.---)

    Date: 06-08-02 09:06

    Karla,

    I found this site by accident about 2 weeks ago.

    Where do I start? At the beginning I guess. I was diagnosed in 1993 at the age of 42. My wife and I were sitting in our chairs. I was watching tv and she was on the phone talking to her oldest daughter. Suddenly my chest started hurting and my my heart felt like it was going to come out of my chest. I got out of my chair and almost fell on the couch. My wife got off the phone about that time and I asked her to take my pulse. It was 150 bpm. I didn't go to the hospital that night, because we thought the dr. that was usually on duty was there and I wouldn't let her touch my dog. I use the local VA. I went in the next morning to see my dr. and had another attack while she was examing me. She immediately put me in ICU. I was transferred to another dr. for my inpatient status. My wife was there. She just happened to work at the VA in admin., so she got to pick my dr.

    My b/p was through the roof. They got that under control and then my dr. started asking us all these questions. We had no idea where he was going them. He then told us I had a murmur and that he had been in contact with a cardiologist at the VA in Alburquerque,NM. The next day I was in an ambulance headed for there. Got there that afternoon about 1:00pm. He already had me set up for a echo. It was done and then the news came. HCM. I was devastated Here I was 42 years old and I was told I had to change the way I was living. I am an outdoors person. I did all the outdoor work around here. Now I still do some, but my wife does the most of it. This really hurts me.

    I say all of this to get to your problem. Like everyone else has said give him time. There are still times when I have trouble dealing with this, and when I do my wife is right there. In the begining I wouldn't let her in to help me deal with this. As a matter of fact right after we got home from the hospital I told her I wanted a divorce, just so she wouldn't have to live with a man who has very serious medical problem. Through the last 9 years she has always been there for for me when I had attacks of chest pain and the rapid heart rate and the stays in the hospital.

    I know you probably don't do this, but never tell him you understand what he is going through. No one does. My wife has said that to me a couple of times and she caught the full force of my anger about having HCM.

    I know this is long, but I guess what I'm trying to say is just tell him that you are here and will always in all ways be there to help him to comfort him and especially to LOVE him. Without my wife doing all those things I really and truly don't know where I would be today.

    One last thing and this diatribe will be over. Do not keep this from your friends. They can be a good source for help for both of you. I know ours are.

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

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