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  • Questions for anyone who has been to Cleveland

    Hi Everyone

    Well is it official. My myectomy surgery date is set for May 3 with Dr. Smedira at CCF. I have a full cardiac work up scheduled with Dr. Lever on April 27.

    I already have my airline flights reserved and paid for.
    But I wanted to ask some questions for anyone who has been to Cleveland.

    My mom is going with me. I/we plan on staying for 2 weeks after the surgery date just to be sure. Plus, I know that when I get home, I will get little rest.

    Where is the best place to stay? I thought that maybe we would stay at the Cleveland Clinic Guest House.

    I also would like to know how far it is from the Guest House to the Lake Erie shore.

    As I have mentioned before, I LOVE the ocean, and Lake Erie is so huge, it is like an ocean in some ways. My mom and I would like to rent a car and visit the shore while we are there.

    Any input would be very appreciated.

    Thank you,

    Eve
    49 yrs. old
    Diagnosed at 31.
    Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
    First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
    Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
    Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
    My brother passed away suddenly at 34 yrs old from HCM.
    2 teenage children, ages 17 and 15.

  • #2
    Eileen

    Please get someone to help the the kids once you are home you will not be able to do it hun, it was all i could do is take care of myself for a while and certain things i needed help with for me

    Shirley
    Diagnosed 2003
    Myectomy 2-23-2004
    Husband: Ken
    Son: John diagnosed 2004
    Daughter: Janet (free of HCM)

    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

    Comment


    • #3
      Well now the gloves are off!

      A few hours ago, I caught Ryan talking to his girlfriend on the phone. I am still in shock.

      That is going to cost him.

      He had already agreed to pay for my mom's and my lodging, so I booked a room at the InterContinental Hotel & Conference Center.

      Things are really going to change around here now. He denies everything, but I heard it myself. He wants me to move out, but I told him I will not leave the kids.

      My heart is under a lot of stress right now.
      49 yrs. old
      Diagnosed at 31.
      Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
      First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
      Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
      Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
      My brother passed away suddenly at 34 yrs old from HCM.
      2 teenage children, ages 17 and 15.

      Comment


      • #4
        Eve, I'm sorry you have to go thru so much right now, in addition to your heart problems.

        You said you plan to stay in Cleveland for a time after the surgery. Think about the convenience and necessities you will need. You want to be near to some kind of shopping. You need to find out what your dietary needs will be - recent myectomy patients can help you there. It's been several yrs since we did this, but a low salt diet post op for all, even HCM patients, was the norm at that time. It was nice to have the kitchen for that.

        You want laundry facilities. You want convenience for trips back for the doctor's visit.

        Any suggestions from others - for that 2 wk period post op? That's a long time away from all the comforts of home.

        It's great to know you will have uninterrupted rest times and someone to help you thru. Best wishes, Linda

        Comment


        • #5
          good luck

          He wants you to move out right before you have major surgery? Sounds like my ex. What a peach!

          I'm so sorry. As hard as it is, please try and focus on you and what you need to make sure your recovery goes smoothly.

          I wish you all the best.

          Sarah

          Comment


          • #6
            OH
            What a mess up man he is, Just like everyone else said just think about getting over this surgery and then give him what he diserves


            Shirley
            Diagnosed 2003
            Myectomy 2-23-2004
            Husband: Ken
            Son: John diagnosed 2004
            Daughter: Janet (free of HCM)

            Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

            Comment


            • #7
              Eve.

              I am so sorry that things on at home are so difficult. You need to be well for your children. We will lift you up in prayer for your physical condition as well as the family situation.

              Peace,

              Leon
              God Squad co-moderator
              Nothing is as gentle as strength and nothing is as strong as gentleness

              Comment


              • #8
                Eve ,

                I am sorry for you. This is the time when you need to have everything be about you and for you. . We are all here for you . I am glad your mom will be with you.

                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

                Comment


                • #9
                  Eve, I am so sorry for your home situation. I can't imagine coping with the emotional and the physical stuff at the same time, but we rise to the occasion as we need to, somehow. So I am wishing you the ability to stay strong and clear about what you need for your physical and emotional health and what your children need. I am so glad that you are going to have the surgery and that your mother is going to be your support. Remember how Burt (I think) said awhile back to someone to create a calm mental place you can visualize clearly to "go" to and escape to--my chiropractor was talking about having such a place for healing time--sounds like your place is at the ocean, maybe with your kids. That is my mental vision of/for you. We are at a distance, but still feel close to you and offer all the support we can. Hugs to you, Lisa I.

                  Comment


                  • #10
                    Eve-
                    I'm so sorry you have so much to cope with, but you can do this!

                    I went to Cleveland in December, to have 2 stents implanted. We stayed at the Intercontinental & I highly recommend it. It will be so much easier for your Mom to get back & forth to be with you. They have 3 restaurants & they will pack food "to go" so your Mom can bring you a meal & bring her own meal if she wants to be with you & still have dinner.
                    It is more expensive than other hotels, but it's worth it & the rooms are very nice.

                    Regarding your Husband, ignore him for now, as best as you can. Concentrate on YOU & Your Children-that's all that's important. Deal with the husband issues in a few months.

                    I'm glad you have your Mother's support-how kind & generous of her to go the CCF with you . She can be your source of strength.
                    We are all praying for you, you are not alone.
                    RONNIE

                    Comment


                    • #11
                      Hi Ninny,
                      Yeah, I’m the guy who wrote about ‘your own private place’ which you can go to in your mind and escape from all the stress and strains of the moment.

                      Now I have another thought for you. Although we often may not understand it, G-d does not do things capriciously. There is a reason for what is going on in your life, and you must have faith that in the end you will be a better person because of it. No one can look into the future and determine how your home situation will unfold, - and the same is true for your medical condition, but whatever happens – it will be part of G-d’s design for you.

                      Keep that in mind through all the slings and arrows of outrageous fortune. Go escape to your private place when you need some rest and recuperation, and you will see all this through to a successful conclusion.

                      We are all children of a very nice G-d, and He does know what He is doing.
                      Burt

                      Comment


                      • #12
                        Thank you so much everyone for all of your support.

                        It has been a depressing time for me here at home. I keep driving myself crazy with my imagination. She must be pretty, sexy and fun.

                        I don't talk to Ryan other than with 2 word answers to his questions.

                        I know I need to focus on my health right now, but sometimes I cannot help but to feel so unattractive and unwanted.

                        Sorry to whine, I wish I could have some wine with my whine.
                        But I do have some Xanax, and I have taken them as directed, no holding back this time.

                        I have been drowing myself in music, like I did when I was a child when my father was drunk and abusive.

                        Sorry, I'll stop my pitty party for myself now. Life goes on. It could be worse.

                        Thank you again,

                        Eve
                        49 yrs. old
                        Diagnosed at 31.
                        Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                        First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                        Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                        Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                        My brother passed away suddenly at 34 yrs old from HCM.
                        2 teenage children, ages 17 and 15.

                        Comment


                        • #13
                          Hey there Eileen

                          What a pretty lady you are. My bf has HOCM (soon to have a myectomy) and when he was sick the same thing happened to him. The woman he was living with at the time went out and had affairs with numerous men and left him home alone often after just coming out of hospital. He stayed away from women and relatiohnships for five years, and then he met me. We have known each other over a year now and I am just so glad that foolish woman gave him up so easily. I have won a prize in him.

                          Your time will come and you will realise it was meant to be. His loss and some lucky man's gain I think.

                          Take care

                          All the best
                          Leanne

                          Comment


                          • #14
                            Thank you everyone for all of your support. I sincerely appreciate it.

                            I am staying at the Suites Hotel instead of the Conference Center, they said the Conference Center is booked.

                            I was hoping to make this somewhat easier for my 65 year old mom (who also has HCM) to go back and forth.

                            My daughter has the flu really bad, I am so worried I will get it too. I leave in about 11 days and the last thing I need is the flu. It will cancel everything.

                            I may go to my mom's in Nothern Arizona a stay and let Ryan take care of the kids. (Oh Ryan will hate that, he loves his freedom and not taking care of sick kids.)


                            Eve
                            49 yrs. old
                            Diagnosed at 31.
                            Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                            First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                            Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                            Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                            My brother passed away suddenly at 34 yrs old from HCM.
                            2 teenage children, ages 17 and 15.

                            Comment


                            • #15
                              Eileen

                              Go for it , i would.

                              He needs to take care of his kids you know, and maybe then he will learn to appreciate you more, i left mine with their dad and was gone 2 weeks and he said he would never say i did nothing again, but really you take care of yourself so you can be there for them later ok

                              Shirley
                              Diagnosed 2003
                              Myectomy 2-23-2004
                              Husband: Ken
                              Son: John diagnosed 2004
                              Daughter: Janet (free of HCM)

                              Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                              Comment

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