[A wife writes....]

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

Date: 10-21-02 08:55

With hubby's upcoming appointment to Cleveland in November, I know he will finally be receiving quality care. My hope - my prayer - is that something CAN and WILL be done for him.

I have read and re-read postings here and researched HCM on the net for hours ever since we heard the diagnosis 6 months ago. From all that I have read, and from what I am able to glean from his past medical reports, he only has 1 risk factor that is listed for ICD implantation, or any other procedure or surgery for that matter. I have to confess that I'm hoping that they will find another risk factor, so something can be done......does that sound terrible?

The beta-blocker that the doctor prescribed for him has done nothing to alleviate his symptoms. It would appear that he has gotten worse over the past few months- he's more symptomatic than ever - and his 'bad days' really outnumber his 'good ones'. I have read that HCM does not progress quickly, but it certainly appears to be that way - or maybe there's something else going on. In the meantme, he's done what he can to try and feel better - diet guidelines, staying hydrated and exercizing when he's able. He has chest pain every day along with fatigue and recently, occassional lightheadeness and SOB (if he gets upset or angry THAT'S the worst - he gasps for air)

Naturally, his quality of life has been reduced. It just breaks my heat (sorry - no pun intended) to see my active guy become this shadow of a man he used to be.

Simple chores wear him out. He drags himself out of bed every day...We no longer have any sex life........this is living for him???

I have had a really positive attitude about all of this until recently...now I find myself crying when I'm alone and anxious again ....

I know that MANY of you have been or are going through much worse; please forgive me for venting. This is the ONLY place where I can come and express my feelings where someone will understand. ..

God Bless you all...

Karla

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[Re: A wife writes....]

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

Date: 10-21-02 09:08

Karla - Your welcome to vent anytime, that is one of the reasons we are here, we understand. I am glad you are going to Cleveland and hope that you will find answers there. However the gates are not going to open and rainbows will not fall from the sky when you get there, do not expect too much, just answers and some options.

Not only for you but for other reading this, HCM IS NOT a disease of only the patient...it is a family affair. You may wish to seek professional help with some of the issues that face your family and your marriage. Bob P. can you please chime in with the benefits of having good mental health when dealing with a disease.

Karla it is OK to cry...but YOU and your husband must LIVE with this...not let it rule you. I have seen many bad things happen to those with HCM, least of all death...more importanly I have seen marriages break up, children rebel, jobs lost and even a few who have attempted to take their own lives on their terms not HCM's. Disease is powerful but people have more power we have friends, love, hope and options. So Karla Smile there are good days ahead, it just may take awhile to find them.

Always,

Lisa

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[Re: A wife writes....]

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

Date: 10-21-02 10:08

Lisa -

thank you for those comforting words. I had to smile when you spoke of 'rainbows' and 'gates opening'.. your right, it will not be the end all and be all.

Yes, thank you for recognizing and validating that HCM is a 'family affair' and other issues can greatly affect family dynamics and the marraige. Even the most 'solid' marraiges can be effected. In some ways, HCM has brought us closer and we have learned/are learning patience and other ways (besides the physical) to express our love. I'ts funny you should mention seeking professional help...I just this morning had the thought that I needed to talk to our pastor about LIVING with this.

I have learned when I need to just get away by myself...go sit by the water, play some music and take some "Karla time"........

I am blessed to have a wonderful supportive family and lots of friends...it certainly helps us get through it.

I will not be going to Cleveland with hubby in November...we discussed it at length and due to finances, we decided it would be best to save the $$ for air fare IF he would need to go back to Cleveland for a procedure. The good news is that he has 2 sisters and his parents close by to the clinic, so he won't be alone while there.

Thanks, as always for listening and understanding........

God Bless,

Karla

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[Re: A wife writes....]

Author: Lisa Salberg (208.47.172.---)

Date: 10-21-02 10:58

Karla - Your welcome.

Lisa

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[Re: A wife writes....]

Author: Lisa Salberg (208.47.172.---)

Date: 10-21-02 10:58

Karla - Your welcome.

Lisa