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Love Myectomy Style?


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felixdacat Find out more about felixdacat
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  • Love Myectomy Style?

    I would greatly appreciate the forum to indulge me in a personal bout of mushiness, post-op.
    One much unexpected result of my recent surgery is my falling in love again with my wife Sandy.
    Was she a rock of strength during a difficult time?
    No, in fact she broke down one or twice and at times teetered on the edge of sanity.
    Was she a Florence Nightingale, angelic creature who made all around her feel warm in her presence?
    Not even close. She was pushy, sometimes nagging, and she didn’t always pay attention to my wishes.
    Sandy and I have had an unusual but romantic past. For me it was love at first site, but I didn’t realize it for 9 months. However, once I realized my feelings for her, it took me over two more years to win her heart. I had to ask her to marry me twice!
    Because of that delay, I have always had a lingering doubt in the back of my mind about her feeling towards me. Although I felt she loved me, I never felt it was the type of commitment that had a perfect chance at surviving intact when you navigate the storms of marriage.
    These doubts weren’t helped by the normal changeover in a marriage to the mundane day by day. She gave me two wonderful children and our love evolved more into the wholeness of being a family. The couple, Sandy & Felix mostly disappeared.
    Sandy has led a somewhat sheltered life. My surgery actually was the worst thing that had ever happened to her. You have to be sheltered when the worst thing that happened to you is what could turn out to be successful surgery to a family member.
    I have lost loved ones and have also had numerous negative experiences that involved friends and family. However, this surgery was the hardest thing I ever went through that involves me directly.
    Seeing Sandy’s difficulties during my recovery week, feeling her pain, empathizing with her vulnerability, and those last doubts of her love for me went away. I also reassessed my feelings toward her, and realized that I loved her more then ever.
    Now, I still have some narcotics running through my bloodstream. And major surgery is always going to be something that brings the emotions to the surface. Still, I knew that the possibility of a successful relief of symptoms could give me a whole new outlook on life. Now I also have a brand new relationship to traverse that new life.


  • #2
    Re: Love Myectomy Style?


    Glad to see that you are back home, upright, feeling good, and able to post to all of us again. Sounds like you're doing great! Everyone here at the board was quite interested in how you were doing at the hospital, and Sandy was good enough to keep us all posted. Thanks again to Sandy.

    Now with that said... how bout sharing some of those meds bud, cause it sounds like you're just lovin life these days

    Take care you two,

    "Some days you're the dog... some days you're the hydrant."


    • #3
      Re: Love Myectomy Style?


      I can't wait to meet you some day (the June conference...if you're up to it?). Because there is no way that this fat, wuss boy, can ver dislike a fat, wuss boy like yourself.
      Good luck with your future procedures.


      • #4
        Re: Love Myectomy Style?

        Felix , glad to hear things are going well for you and you too Sandy. Isn't it nice to be home where everything is so much better even if you have had major surgery recently. It must have been very difficult for you both when Sandy had to go home and you were left with a bunch of strangers. I enjoyed reading your love story. I observed a similar situation with my sister and her husband after his recent open heart . So far it looks like even though those good drugs are way out of his system the renewal of love and devotion goes on. Nothing like facing uncertainties to make us even more thankfull and in love with those persons and things in life that are so dear to our hearts. Take Care and take it very easy Felix. Pam
        Dx @ 47 with HOCM & HF:11/00
        Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
        Lead failure,replaced 12/06.
        SF lead recall:07,extracted leads and new device 2012
        [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
        Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
        Genetic mutation 4/09, mother(d), brother, son, gene+
        Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin


        • #5
          Re: Love Myectomy Style?

          Gosh Felix, i'm just not sure how to take that wonderful compliment. LOL.

          You hang in there buddy... it's nothing but downhill and a smoother ride for you from here on in. In all probability i'll be exactly where you are soon enough. I have to be honest here... the thought of a myectomy scares the crap out of me. I don't know that i'll ever have the courage that you, Doug, and the rest of the myectomy crew here have had. It's more likely that i'll be crying like a little baby every second until they wheel me into the operating room!

          You take care of yourself buddy, tell Sandy i said hello, and i am glad to hear from you both


          P.S. I'll be telling my age here, but i DO remember that cornball television show 'Love American Style'. What a hoot!
          "Some days you're the dog... some days you're the hydrant."


          • #6
            Re: Love Myectomy Style?

            Hey Felix,
            Sounds like you got a keeper there. My wife and I have been married over 47 years so far, and I was hospitalized seven times in 2003 alone. I know exactly where you’re coming from.

            I also have some more good news for you; As the years go by it gets better and better.

            Glad you’re feeling better – Best regards to you and Sandy.


            • #7
              Re: Love Myectomy Style?

              ...same applies to me and my husband. This past year has brought us much closer....We've been married almost 18 years (this coming May). With any marriage, over time, you sometimes take each other for granted. Going through some stressful times this past year with HCM problems has been beneficial in that respect. He just told me the other day that he feels closer to me now than he has in years. He appreciates, finally, that I do not feel "normal" and do not have energy and stamina like someone with a normal heart. He has been so supportive. My 9 yr.old son, Matt, has been so supportive too...he's helped me with household chores and has been a caring, sweet boy since day one...what more could I ask for? I have been more appreciative of things now too...
              \"It is not length of life, but depth of life.\"

              Ralph Waldo Emerson


              • #8
                Re: Love Myectomy Style?

                this is felixs wife sandy

                with a day like today, I had to come here and read those words again. felix seems to be getting worse and worse i.e. now he has nausua, he
                still is barely eating, and once in a while some pain now. I have yet to see a day where he is improving, versus getting worse. In the midst
                of all this, I can do nothing right. He wants to be left alone and for
                me not ask questions. yet thru my concern I need to. If I ask about
                things, he gets upset with me; if I just go ahead and do things the same thing happens. I KNOW he is going thru a lot. I am just not a strong
                enough person to be able to handle the verbal abuse. I just want the
                man who fell in love with me back more than anything else in the world.
                It is so hard to imagine having him back. Between teh HCM that had
                gotten worse and worse, and now the myectomy and recovery, I do
                sometimes wonder if I am good enough for him since I cannot handle
                his crankiness and limitations.
                I want so badly to take the kids and just ran away for a month and
                come back and find a man that can smile again. that can hold me
                in his arms and tell me that he loves me. I wish I did not need
                that; that I could get thru this without crying almost every day. If
                not for needing my job (it pays the bills), I would just hire nurse care
                and go to my parents for a while. It would probably be the best.

                Am I the only spouse to fall apart?

                ok. sorry to air this here. he started it



                • #9
                  Re: Love Myectomy Style?


                  You shouldn't feel that there is anything that you've done (or not done) to get on Felix's cranky side. If it makes you feel any better... when i had my cancer surgery a little over three years ago, i actually told my sweet 70 year-old mom to f*** off when she came to visit me at the hospital. I guess she asked just one question too many

                  Some patients (and there's a few of us out here) just want to be left alone and not bothered when we're sick. It's not you, and it's not him. It's just circumstances. Men can be big ol' babies when we're in pain, and a lot of times a guy just needs his space

                  You take care of yourself, and by all means, come here to vent any time you want!

                  "Some days you're the dog... some days you're the hydrant."


                  • #10
                    Re: Love Myectomy Style?

                    You guys are on a rocky piece of road right now, but things WILL get better. Felix is, shall we say ‘concerned’ with his situation and apparent lack of improvement, and so are you. This alone will make you act like two underfed lions in a very small cage. Here are some suggestions which might improve the situation.

                    First, I’d talk to the doctor and describe all the problems Felix is having. If this is a normal part of post op. recovery, you both will feel much better knowing he’s still on the right path to a better future.

                    Second, if there are in fact any problems, action can be taken to correct matters now. This too will tend to calm the turbulent waters, as each problem is resolved and you can finally see improvement in his condition.

                    Hang in there kiddo. It’s always darkest before the dawn.


                    • #11
                      Re: Love Myectomy Style?

                      Sandy -

                      Hang in there! I should have my husband respond to you instead of me, but since he isn't available right now, I will do it. I haven't had a myectomy, but I am a 39 year old woman who, at 37 and just 2 months after the birth of my son, had a benign brain tumor. I had 2 brain surgeries, and although my prognosis was always good, I was in terrible terrible spirits, impossible to deal with, and horribly depressed. I think that maybe that happened because I was used to being totally in control of my situation, and suddenly I had none. I won't go into the symptoms and side effects that I had after the surgery, but suffice it to say they were terrible, and I felt that I was getting worse instead of better. I thought that none of my doctors were helping me to get better, and that it was hopeless. Whatever Felix envisioned before the surgery probably hasn't happened, and I am sure he is just terribly frustrated. I am also sure that once the physical symptoms subside, his positive outlook will return. I should also tell you that it took antidepressant medication to snap me out of it. If this continues, that might be something to consider. I was on Paxil for 6 months, and I can't tell you how much it helped me.

                      Just this morning my husband was telling me how he would leave the hospital and come home and breakdown because he didn't think he would ever have me back. I know it was a hard time for him, but at the time, all I could think about was myself. I had no regard for my infant son, any of my relatives who came out to help, nothing. Its something you can't relate to unless you have experienced it.

                      Take care, and please hang in there. For all of your sakes. I promise, it will be worth it in the end. And remember, there are people there to help. Ask for a good psychiatrist if you need more help for him than you can provide. You have both been through a very traumatic time, even though it was planned.

                      Also, have you sought any support from your synagogue. Felix had mentioned once that he had not spoken to his rabbi about his situation, but I must tell you that the rabbis from my synagogue as well as other congregants were a great source of support for us during my illness. You might want to look there for help.

                      Please send me a p.m. if you need more info. I wish you the best.


                      P.S. I am also a southerner, although I have been transplanted to L.A., so I bet we know people in common.
                      Daughter of Father with HCM
                      Diagnosed with HCM 1999.
                      Full term pregnancy - Son born 11/01
                      ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                      Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.


                      • #12
                        Re: Love Myectomy Style?

                        Sandy, I'm sorry things are going so rough for you all right now. My first concern, since you say Felix is getting worse, with symptoms he didn't have before, check in with the docs, describe the symptoms, keep watching his temperature and weight gain or loss. We had a similar situation, and there were real medical causes. Don't ignore new symptoms. However, there has to be a healthy balance to avoid over-reacting. It's all a very exhausting time, between traveling which is extremely stressful at the best of times and then involving a major surgery. Add to that, the full time job, a full time Mom's work, and being the live-in nurse. Call in the reserves, even if it's just for a few hours one afternoon. Ask one of those people who volunteered to help out to come sit for the afternoon and you get a break doing something for you. Hope you soon pass beyond all these problems that go with the first few wks and you have a few good nites' sleep to restore your energy and make the whole world look brighter. Linda


                        • #13
                          Re: Love Myectomy Style?

                          thank you all so much. when I wrote that message I was in the throws
                          of being an emotional mess. all your support and suggestions are
                          great. I am sorry for venting like that.

                          I know that felix is going to call up to NEMC tomorrow about what
                          he has been feeling. Tonight
                          has actually not been as bad as the past few nights, so maybe...

                          I am going thru my EAP program at work, to help me thru all this
                          as well.

                          I had wanted to go to services with the kids last friday night at the
                          synagogue but was so exhausted, I just could nto do it. maybe this
                          week. If felix is up to it, I also hope that he can go.

                          I am VERY lucky that I have a wonderful set of friends. So many
                          people have taken the kids. today one of my friends had them
                          from about noon until I went to get them at 6:30. the rest of week
                          I have had many offers after I pick them up from school to have
                          us come over for dinner, or meet out somewhere. this way felix
                          gets minimal commotion at home. the kids LOVE being out. when I went
                          back to get him last week at NEMC, jack (my 3 year old) went to
                          2 different places and Alyssa (my 5 year old) went to her best friends.
                          both behaved beautifully!

                          the one thing for the positive here is that I have been a better mom
                          to the kids. I have found myself more patient with them than ever;
                          they are always on my mind as far as their well being while their
                          daddy is not able to help out.

                          I wish I could have traded places with felix. I do a lot better as the patient than the caregiver. I need to be patient with the road to recovery. I do know deep in my heart that we love each other dearly.

                          thanks once again for all the support. I hope that one day I can
                          return the favor.



                          • #14
                            Re: Love Myectomy Style?

                            Sandy, Your "venting" is perfectly OK here. As for helping others, you will have already helped many through your sharing some of the downside of the road to a better life. Lots of people will be thinking, "Oh, so it wasn't just me". I'll bet more than one person recognized themselves in your post. It just isn't a picnic, but when it must be done, you just do what has to be done. Linda


                            • #15
                              Re: Love Myectomy Style?

                              Sandy and Felix, to both of you, thanks for the posts. It makes me realize how much you have both gone through. I hope that Felix continues to get better. Please let us know what NEMC has to say.


                              Husband has HCM.
                              3 kids - ages 23, 21, & 19. All presently clear of HCM.


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