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Supportive Husband

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Tim Stewart Find out more about Tim Stewart
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  • Supportive Husband

    In April 2002, my wife Lynn (31 years old) was diagnosed with Hypertrophic Obstructive Cardiomyopathy (HOCM) during a TEE to evaluate a heart murmur. Lynn often had chest pain/tightness, shortness of breath, dizziness and her vision would blacken upon standing from a bent position. We immediately sought out a specialist in the area of the disease and with Lisa's help we were led to Dr. Harry Lever at Cleveland Clinic.

    When we met with Dr. Lever in June 2002 he increased Lynn's beta blocker, Toprol XL, to be 200mg per day (a pretty heavy dose). After 30 days Lynn noticed some symptoms had improved but not as many as her or the doctor would have preferred. It was decided that Lynn should have a septal myectomy to reduce the wall thickness. The myectomy was performed in August 2002 and should provide a long term relief of many symptoms. However, there were some complications.

    On 10/20/2003, I took my wife to the ER about 1:00 am as she was complaining of side pains and pain while inhaling. The local ER did a number of test and compared there results with the records faxed down from Cleveland Clinic and initially found nothing wrong. Then a Cat Scan indicated a severe Pericardial Effusion (build up of fluid around the heart). She was immediately admitted and scheduled for immediate surgery to relieve the fluid - a procedure the local surgeon called a Pericardial Window. This required a new incision to be made and a tube inserted to drain the fluid. Dr. Smediera (from Cleveland Clinic) was on call that night and was willing to care-flight her up to Cleveland from Dayton but later realized that it may be too risky so the decision was made to do the procedure in Dayton. The procedure took about 25 minutes under general anesthetic. About 40 oz was quickly removed and the tube remained in place for a few days to drain the remaining fluid. She was awake and alert about 45 minutes after the procedure and stayed in the hospital a few days after before being released.

    In December during a routine visit with Dr. Lever, an echo showed Mitral Valve regurgitation - something that was not present after the myectomy. We will return to Cleveland in February for another evaluation. At that time it is entirely possible that another surgery will be scheduled to repair the mitral valve.

    As her husband, I try to remain as supportive as I can. Like most people with HCM, Lynn has good days and bad days. For a while, the "good days" out numbered the bad. However, that is no longer the case. It can get frustrating for me at times when I come home from work and nothing has been done around the house (i.e. laundry, dishes, etc). But then I see that it was a "bad day" and she just did not have enough energy to do much more than get dressed that day. The next day, conversely, she might get up and clean the house and go to the grocery all before lunch. I *love* those days. However, she will usually be tired for the next day or so afterwards.

    Does anyone else live with a loved one who has this condition? Does this situation sound familiar to anyone? While I try to remain as supportive as possible, sometimes I too need reassurance that I am doing the best that I can and that things are only going to get better.

    Thanks in advance for your comments.
    Thanks, Tim
    Forum Administrator

  • #2
    the other side

    Dear Tim,

    I know that you are joyful when you know that your wife had a good day because she had a good day and not because the evidence of that was the laundry was done.

    I am the wife that had the bad days. And my husband left. Just sticking it out for the "for worse" part is a big deal.

    Yes, it is hard and yes, you need support around your fears and your needs. Lynn may not be able to give you all that you used to get because she doesn't even have enough for herself. The HCMA, your church, and your friends are all here to help you get through your bad days and Lynn's bad days.

    I don't know what the future holds for Lynn, but I DO know that you seem to love Lynn very much and your love and support will only help her get better faster.

    S

    Comment


    • #3
      There is someone you do not hear about much on the board..but without him I doubt there would be a board, or in fact an HCMA. My husband Adam (also the VP of the HCMA) -
      Think of this -
      Your married for 3 weeks and your in the ER with your wife. You know she has a heart condition but it has never caused any major issues. She has a headache and can not move her arm, nor speak clearly??
      Diagnosis - a stroke and endocarditis
      After 7 weeks of IV therapy (antibiotics) you get home from a night out at a comedy club -which you took your wife to celebrate the IV coming out and her birthday only to find a message on the answering machine that her uncle (with HCM) has died suddenly near his home in Montana.

      For a while things calm down.

      Less than 2 yrs later you are told your wife (23 yrs old) needs a pacemaker...she gets it...feels a little better then feels the same a few months after...s/b dizzy palpitations c/p... the works...

      Meanwhile your sister in law is in and out of the hospital and your father in law is starting to have more problems...

      Then your sister in law dies (while your wife is 8 months pregnant) - You know your sister in law has asked your wife "if anything ever happened to me take care of the kids" - which you agreed to (but never thought it would happen). SO here you are a 30 year old guy about to be a first time dad - with a wife with a bad heart, baby on the way and 2 kids without a mom (whom you love very much) oh and a custody battle is on its way with their dad.
      OK lets break here for a minute - lets be real - -MANY guys would have run from this and said NO WAY--- now back to the story
      Well our daughter was born and lets look at it from his side -
      Your wife begins to say (2 days before her due date) My heart is racing and feels wrong, I think I am going to call the doc. Doc says GET IN HERE NOW! Doc says no way for a regular delivery it is a C-section first thing in the morning.
      morning comes - so did the epidural (I did not know then what I know now) -
      Husband standing by just watching as wife says... "sorry but I am about to give you guys and interesting day" and then blacks out - RUSH to the delivery room - -Out comes your daughter! 6lbs 14oz HEALTHY!!!
      Off goes your wife to CCU (not maternity!) OH 4 weeks earlier you were in CCU as you watched your sister in law die...now your wife is there!?! All is well – off to fight for your niece and nephew….
      The family fought for custody, our family won (which should tell you a great deal about Lori’s x-husband).
      During all of this your wife is all over this new thing called the internet (1995…AOL was a baby!) She is learning all about this HCM thing, she finds out that treatment options were ignored and her sister is dead because of it. Your wife decides to start a support group (with $$ that you have both earned and saved).
      Your wife then meets with a top HCM doctor in Minneapolis (some guy named Maron) He suggests she get an ICD... OK next! Off to Boston to have an ICD implanted...in a few yrs (on passover)it "breaks" off to surgury again for a new one.
      Your life is now working around 3 kids, a wife who travels to cardiology meetings several times a year, golf outings and annual meetings with 100's of people who seem to know your wife rather well???

      So if you have taken the time to read all of this you have made up your mind about how supportive my husband is. He is a rather quite guy ( I know I do enough talking for both of us) he does not talk about HCM much, nor does he talk about how he feels about it. But I can say this, he shows his support and caring for each of you everyday in ways that can not be measured.
      Tim, I know he shares many of your feelings I know somedays when he needs a hand around the house and I can not get up to help him...well that is frustrating for him (and Me!). But I know I am very loved and I know he cares about how I feel on good days and bad. I look forward to the good days in part because I see that he is happier on those days and when I am not well I can see the stress on his face (never play poker with him... I cant afford it)

      Well you have just met Adam... Ladies hands off I am keeping this one!
      Our first date was December 19, 1982 - do the math.. he is my high school sweetheart and all I need to make me smile!
      May 20, 1990 we marrried and it has been an adventure from that point forward..."love lifts us up where we belong....life's you and I alive" - the theme song to "An Officer and a Gentleman" was our wedding song...who knew the words would mean so much so soon.

      Love,
      Adams Wife
      Lisa
      Knowledge is power ... Stay informed!
      YOU can make a difference - all you have to do is try!

      Dx age 12 current age 46 and counting!
      lost: 5 family members to HCM (SCD, Stroke, CHF)
      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
      Therapy - ICD (implanted 97, 01, 04 and 11, medication
      Currently not obstructed
      Complications - unnecessary pacemaker and stroke (unrelated to each other)

      Comment


      • #4
        Hat's Off to Supportive Spouses!

        For all you ladies (or men) out there with supportive spouses, cherish every moment! (I'm with Sarah, my ex couldn't handle it). I know too well the days when it's difficult just to get up and get dressed. And the good days are the best!
        HOCM, Septal Myectomy 10/02 (Mayo Clinic), Medtronic ICD 10/07, TIA 10/07

        Comment


        • #5
          Re: the other side

          Originally posted by Sarah
          I know that you are joyful when you know that your wife had a good day because she had a good day and not because the evidence of that was the laundry was done.
          Absolutely. When I come home and see that the kitchen is clean and that she has been busy around the house ... I am thrilled because I know that she is having a good day - even if she has to take a nap in the middle. It makes me very happy to see her "winning the battle" with this disease. I get so frustrated for her (and not at her) when those bad days come around. I hate it for her when she barely has enough energy to get out of bed. It is then that I know that the HCM is having a strong effect on her. That is when I try to become her "cheerleader" and support her through this bad day.

          Originally posted by Sarah
          I don't know what the future holds for Lynn, but I DO know that you seem to love Lynn very much and your love and support will only help her get better faster.
          That is my hope and prayer - that my support will pay off ... that my support will help her get stronger faster ... that my support will remind her time and time again how much I do love her and that I am there for her.
          Thanks, Tim
          Forum Administrator

          Comment


          • #6
            mutual support for supportive "Well Spouses"

            Dear Tim,

            In case it may be helpful to you and other spouses of those with HMA as a supplement, you might want to consider checking out a good mutual support network (with a good number of local face-to-face self-help groups) wherein partners of those with a serious illness share their practical experiences, coping skills, strengths, insights, and hopes. It's called the Well Spouse self-help group organization, and their website is:
            http://www.wellspouse.org

            They provide support for and by "well spouses" of the chronically ill. They have a quarterly newsletter, "Round Robin" correspondence exchange, bulletin boards, e-mail discussion group, chat rooms, and and free assistance in starting new local local mutual support groups. Those without Internet access can reach them by phoning them (their contact address is also in NJ) at 1-800-838-0879.

            Take care and hope, - Ed

            P.S. A key point they make is... "When one is seriously ill, two need help."

            Comment


            • #7
              ED,
              Thanks for the lead - I will contact the organization next week and see about there program and get back to the rest of you!
              Lisa
              Knowledge is power ... Stay informed!
              YOU can make a difference - all you have to do is try!

              Dx age 12 current age 46 and counting!
              lost: 5 family members to HCM (SCD, Stroke, CHF)
              Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
              Therapy - ICD (implanted 97, 01, 04 and 11, medication
              Currently not obstructed
              Complications - unnecessary pacemaker and stroke (unrelated to each other)

              Comment

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