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  • Why?

    [Why?]

    Author: Erica Stolzenberg (---.biz.dsl.gtei.net)

    Date: 10-07-02 16:37

    Ok ... maybe someone has had the same experience with a loved one with HOCM or maybe one of you has it and knows first hand what it is like and you can help me out!

    As some of you have read from my prior postings … my father finally was given a name to his condition two weeks ago. Since then, my father has either been elated and optimistic or he has been the complete opposite ... DEPRESSED and moody. One minute he is a bear and the next minute he is a scorpion! He has Jeckyl and Hyde syndrome bad! My mother said that sometimes too much information could work against a person. He is feeling afraid ... tired ... and fed up. And, I don't blame him. But I just fear the stress he is putting upon himself and his heart is going to make him feel worse (both mentally and physically.) He already feels incapacitated ... this can only be putting him over the edge. I feel like he fits the mold ... of the "last straw that broke the camels back!" :’(

    Does anyone have any suggestions? I feel like all I am doing is eat-breathing and sleeping his condition/feelings. I am his daughter and I love him so it is worth it ... but to hear him get "nutty" makes me feel so sad and helpless. He isn't treating me this way first hand ... he is treating my mother the way I mentioned above and it hurts to hear him treat her this way because he is feeling hurt, sick, etc! Good thing I am no longer under their roof. I just wish I had a magical potion I could offer to him and everyone else with HCM/HOCM to take away their pains and misery but I don't and it's frustrating. I hate to see my father in pain ... I HATE HCM/HOCM! Life is so unfair to good people. I am praying but I lose faith when I see/hear my father in so much mental/physical pain. He is missing out on so much!

    I am so lucky to have him this long ... I recall growing up hearing him say that he wouldn't make it to my middle school graduation ... and then he would tell me he wouldn't make it to my high school graduation ... and then I heard he wouldn’t make it to my college graduation (and it took me seven years ... but he made it.) I am 29 years old and I still have him physically but I feel I as though I am losing him mentally! :'( I love him so much. What can I do to ease his pains? What can I do to ease his discomforts? What can I do? I needed to vent (sorry for writing such another long novel!)

    I do hope those of you who know how my father feels can give me some insight and those of you who have loved ones with the condition can give me your thoughts on how you cope with your loved ones! I am so thankful to all of you and so thankful that I have a place to come to! Thanks in advance! ~Erica

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

    [Re: Why?]

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

    Date: 10-08-02 08:42

    Erica -

    It is all too new to him and you... you all need time, allow yourself that time to adjust. What can you do??? You can tell him you care, you can help him find quality help, you can be a daughter and love him, you can be a friend and support him and you can be a bit tough and push him albeit gently.. to treatment so that he can feel better.

    Also understand that you too have been touched by HCM as it is a genetic condtion and it is normal to wonder.. do I have the gene, may my kids someday have the disease?? Let yourself mourn for your loss... the loss of "normal" health... the loss of control you thought you had over some issues that you never really had control of...

    Let yourself cry... then laugh and cry again it is so normal and so healthy to get it out.

    Know your amoung friends and know your never alone!

    Lisa

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

    [Re: Why?]

    Author: Erica (---.biz.dsl.gtei.net)

    Date: 10-08-02 09:46

    Lisa ... Thank you for your prompt reply! I can't wait to receive the book. Did my credit card number go through? It is linked to my checking account so the funds are available.

    Anyhow ... Dad has an appointment at UMSC with Dr. Spencer on 11-11-02 for the consultation and ablation (if he is a match.) I am excited for him to finally be seen by an HCM specialist and I am excited for his possibility at a new life. Dr. Spencer is definitely experienced with the procedure and his nurse, Donna Killip, has been wonderful with sharing information with my father and me. I hope all goes well. I will be driving my parents down to Charleston, SC and staying with them while he has the procedure and then driving them back home. I hope he will be ok in the car ride back. Do you have any advice, suggestions, thoughts, and recommendations you could share with me? I'm so scared!

    I am here for my father 100% (and mom too.) I am their back-bone ... their support, their love, their pride and their joy so I will continue to do everything in my power to help them and support the HCMA. I can't wait to read the November issue of Esquire, too.

    Please let me know what I can do to support the organization! I would love to advocate for people and families afflicted by HCM/HOCM!

    Glad to hear you are feeling better!

    Smile

    Erica

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

    [Re: Why?]

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

    Date: 10-08-02 10:57

    Erica, you are in Fayetteville? I know the road between Fayetteville and Charleston isn't a bad one, unless they are still doing all the construction around Lumberton. Maybe you can use a van and put him in the back with lots of pillows and blankets? He might be able to sleep the whole way that way. That's of course if they do decide to do any procedures on him. Otherwise, I'm sure he'll want to be in the front seat! Keep up the good work with keeping him on track. And keep us posted, too.

    Reenie

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

    [MUSC travel]

    Author: Erica (---.biz.dsl.gtei.net)

    Date: 10-08-02 11:11

    Thanks Renee! Actually, my parents reside in Cary and I live in Durham (20 minutes from them.) What road will I be traveling? Are you in NC, too? Thanks for your input! I will look into getting a bigger car ... My car is tiny - Honda Civic 2-door! Not sure how comfy the front seat will be for the duration of the trip! Yes, he will definitely want to sit up front with me! Do you know how many hours the drive should take?

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

    [Re: MUSC travel]

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

    Date: 10-08-02 14:25

    I am from Sumter, SC. You would travel south on I-95, then at I-26 you would go south into Charleston. Actually I think it's I-26 east, but it really goes kinda southeast. I don't have detailed directions from I-26. The hospital will be able to help you with that.

    My grandmother had heart surgery at Duke in the 70's or early 80's. They replaced a valve for her. I kinda know where you are.

    I hope you have a good trip. Take care of yourself and your parents.

    Reenie

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

    [Re: MUSC travel]

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

    Date: 10-08-02 14:28

    I forgot, it should take about 5.5 hours or so. Hope this helps.

    Reenie

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

    [Re: MUSC travel]

    Author: Erica (---.biz.dsl.gtei.net)

    Date: 10-08-02 14:45

    Wow ... that is a long drive! Well, not too long but long for someone having a procedure! Do you think he will be ok to sit in the car for that long? I wonder what kind of discomfort he will be in afterwards.

    I have never been to Charleston ... we will probably stay at a bed and breakfast or hotel. : )

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

    [Re: MUSC travel]

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

    Date: 10-08-02 17:47

    Erica, I think he would have to get up every couple of hours and walk to keep his circulation up. Also, about accomodations, many hotels there will give you a discount if you are there for the hospital. I'm sure the hospital will give you info on that if you ask. Just a tip. My mom had chemo there all last fall and part of the winter and they always stayed near the hospital at one of the hotels that offered a shuttle service. Any help would be great, ya know? Good luck, and feel free to write me directly if there is anything else I can do for you.

    Reenie

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

    [Re: MUSC travel]

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

    Date: 10-08-02 17:47

    Erica -

    I would suggest a first appointment to talk and a second for the procedure as you may wish for a 2nd opinion from a different center.

    You only have one heart... do not jump too quick into a procedure, better say then sorry.

    Lisa

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

    [Re: MUSC travel]

    Author: Erica (---.biz.dsl.gtei.net)

    Date: 10-09-02 12:12

    Dear Lisa ... Thanks for speaking with me this morning! I'm glad you understand that 'mentally' ... one procedure might be more beneficial over the another (as in the case with my father! I will make sure to find out his mitral valve condition and have him find out if he has a left bundle branch (re: permanent pace making.)

    Thanks again. Heading home to check the mail and see my book has arrived!

    Guys ... Lisa really sounds sick! Please wish her well and a speedy recover! Hope you are all having a great day!

    ~Erica

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

    [Re: MUSC travel]

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

    Date: 10-09-02 12:22

    Erica,

    Might I suggest you go to Charleston a day or two early and sight-see? It's really a beautiful city. You should at least see the houses along the battery, anoyone there will be able to tell you just where. From there you can see Ft. Sumter where the first shots were fired for the Civil War. Also, all the houses along the battery are called Rainbow Row because they are all colors, kept up by the people with authentic paints like were used in the 1800's. There are so many things to see and do there. But don't overwhelm your dad. Take it slow and easy.

    Reenie

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

    [Re: MUSC travel]

    Author: Lisa Salberg (208.47.172.---)

    Date: 10-09-02 17:23

    Erica - Thanks for the kind words... Feeling better by the minute! I hope dad makes the best choice for HIM... we all know what is right for one..may not be right for the next and all the reasons are varied!

    Best to all ... and those houses sound great take pictures!

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

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