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Nicole Miloszewski Find out more about Nicole Miloszewski
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  • Soon to be fixed?

    I am 26, I have IHSS, I was told today by a Cardiologist out of Chicago that I have to go to Cleveland and have a Myectomy within the next two weeks. My husband is just a wreck, and my daughter is to young to understand that mommy is going to a hospital. My insurance carrier does not cover the hospital, or doctors I am to see. Has anybody ever been in the same situation? How can I make it easier on my family so they won't worry and look so depressed. The smile I keep on my face all the time like this is no biggy is turning into a major biggy. The worst part is that I am scared, nurvous, and very excited that I will be almost normal again. I will be able to excersice, wakeboard, snowboard, run around with my daughter, go for walks with my husband, and breath. I can't take a deep breath, stand up quickly, or really do anything phsyical. I know there is alot of pain involved with the Myectomy, hey I have given birth, I know pain. I also know it is a long recovery time and I am going to have to be patient. One of the major pro's for me is no more meds and alot more time with my family. I know I will be fixed soon, not completly but pretty close. Thanks for listening -

  • #2
    Re: Soon to be fixed?

    Hi Nicole. Welcome to the HCMA. I'm glad you have found us. You are seeing some of the best HCM doctors around at the Cleveland Clinic. Please read through the information part of this site as well as the message board. I think you will learn a lot here.

    I just wanted to touch on a couple of things in your post. First of all, it's a really good thing that your doctor is referring you. If he is still calling your condition IHSS, he is really behind times on the disease. Secondly, even if they do surgery on you to reduce your septum, that doesn't mean you will be off medicines. You will almost assuredly still be on some meds, but your expert will talk with you about which ones, what they will do for you, etc. Please do a search on this site for myectomies. There are several people here who have recently been through the surgery and you can read all about their experiences here.

    Another issue is your daughter. How old is she and have you had her tested? HCM is a dominant genetic trait and there is a chance that any of your children have inherited the gene. That percentage is 50%. Also, your parents and any of your siblings should also be tested. There are cases of apparently spontaneous HCM, but that is very very rare.

    Again, welcome to our site and please keep us posted on your visit to Cleveland.

    Reenie
    Reenie

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

    Comment


    • #3
      Re: Soon to be fixed?

      Nicole,

      I agree with Reenie and I'm glad you're on your way to see some cardiologists who are experts in HCM. Did your doctor tell you that Mayo Clinic in Rochester, MN also has a group which specializes in HCM and which performs myectomies? Rochester may well be closer to Chicago and your insurance might cover their services.

      Most health insurance companies will cover at least part of the cost even if the doctor or hospital is not in their list of approved providers. Especially when the procedure is as uncommon as is myectomy. If you want help negotiating with your insurance company, Lisa will be a great help to you. Call her on Thursday at 973.983.7429. She can also help you sort through your questions, your options for clinics & doctors, and how to talk with your family!

      Welcome to the Board!

      Pat

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      • #4
        Re: Soon to be fixed?

        Dear Nicole,

        Pat and Reenie are both right. Also, you can call the Clinic (Cleveland and/or Mayo) and talk to their billing office about insurance --they are very nice and can give you lots of info on costs and coverage. Just have your plan info ready when you call. Both clinics have web sites (go to the HCMA home page, then clinck on Links).

        As for your family, your and your hubby should both read the whole web site (not just the board) for more info on HCM. You should also search the board for references to "myectomy" and read those. Many people have gone through them here and are very happy.

        Robert Hartwell is a Chicago-area resident who had one early this year and he would be happy to talk to you about it. You can use the member directory to get his PM/E-mail info to reach him directly.

        The more your husband understands what is involved and how much better you'll be after, the easier it will be on both of you. Recovery is like that from any major surgery and you will need to work out a plan for having the house, meals, and _yourself_ taken care of during that time. And hubby, and your daughter, too! If you all work out the plan together, it should make it easier on all of you.

        I've been moderating this board for a couple years now, and no one has regretted their myectcomy and no one has a bad word to say for Mayo or Cleveland.

        Keep us posted!

        Sarah

        Comment


        • #5
          Re: Soon to be fixed?

          Welcome to the board! You are going through a very stressful time now and please know we be there to help you each step of the way.
          1. A myectomy will not "cure" all of your symptoms.
          2. You may not be able to do all of the things you listed - symptom free - you may well still have shortness of breath and other symptoms post procedure.
          3. You will still need to take medications - likely much less but your heart will still need help relaxing.

          RE your insurance inssues: Mayo and Cleveland are the best centers for myectomy in the country - -both are very use to dealing with insurance companies and have people on staff to help you. If insurance will not pay you can arrange payment plans with the hospitals - They will work with you.

          I am in the office today if you want to talk.


          Best wishes,
          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


          • #6
            Re: Soon to be fixed?

            Nicole - My name is Kay. I just had a myectomy at the Mayo Clinic in Rochester a week ago today. I too was scared - I am 31 -have small childrend, was worried about the pain, insurance and all the other things you mentioned.

            I do not regret in the least my decision to have a myectomy. The people at the Mayo Clinic were extremely organized, sympathatic- they deal with people with HCM on a daily basis.

            As for as the surgery - nothing to it - I don't remember a thing. The pain afterwards was tolerable. Keep the pain medication going as long as they will let you have it. The scar is higher on my chest than what I had expected - I can live with that. The doctors assured me that if I keep it out of the sun for a year it will be nothing but a line. It has been a week and I've already cut my pain medication down from 2 every 5-6 hours to 1 every 6-8 hours. I walk my 6 year old to the bus stop every morning and meet him every night. Slowly, but we make it.

            My children are 3 and 6. I told them mommy was going to get her heart fixed. They stayed with a cousin who kept them very occuped when they weren't in school or at daycare. They adjusted well. We called them every night. My children understand my heart condition. I had a 10 year old nephew who passed away in November and my 3year old has the disease also.

            Before surgery my gradient was 120 it is now 0. I had valve leakage which is now gone. They are going to try to remove all my heart medication over the next 2 months. Before my heart has 80% dependent upon my defibulator. They have turned the pacing part off and my heart is working 100% on its own. I still keep the defibulator for back up for sudden death.

            My insurance only will pay 60% of my hospital bills because out of state means out of network. We'll manage the bills. They have to take payments and from what I understand everyone telling while I was up there everything is on one easy bill and manageable.

            I Have Absolutely No Regrets. Please email me and let me know if you have any other questions. Check with your insurance. Maybe they will pay at least part if you go to the Mayo Clinic. The doctor I spoke to up there was Dr. Nishamura. Oh, also all my follow up visits will be with my doctor here in St. Louis, so there is no need to make more trips to Rochester.

            I hope this all healp. Believe me, I know exactly what you are going through, but it is all worth it.

            Comment


            • #7
              Re: Soon to be fixed?

              Nicole,

              I had a Myectomy at Cleveland Clinic in November. I would be happy to talk to you and your family about it if you would like. Please send me a private message here on this board, or e-mail at [email protected].

              Where are you located in the Chicago area?

              Bob
              Cleveland Myectomy Crew
              Member since November 2002

              \"Chance favors the prepared mind!\"

              Comment


              • #8
                Re: Septal Reduction Myectomy

                Wow, thanks to all who replyed to my "soon to be fixed". Looks like things are in overdrive for me. I arrive in Cleveland on Monday, and go into surgery on Thursday. Dr. Lever is my doctor and Dr. Smedira is my surgon. I am scared, nervous and still excited. Keep me in your thoughts. Just in the past few days alot has gone on in my life and I wanted to thank the people who replied to me and the all the contributors for you support, intellect and courage. I will speak to you in a few weeks.

                Comment


                • #9
                  Re: Soon to be fixed?

                  Hi there,

                  I know this must be a really overwhelming time for you right now and I wanted you to know you are in my thoughts. I had my myectomy at CCF August 29, 2002 with Doctors Lever and Smedira. I can't even begin to tell you enough wonderful things about them!! I have never encountered doctors that are more compassionate and knowledgeable about their speciality. You are in terrific hands, just hang in there through the whirlwind ride of things, it will be worth it in the end.

                  As an added benefit to going right now I would bet the beautiful flower beds on the hospital campus are in full bloom and should be something to see!! I always wish that whoever manages the grounds there would come and do my landscaping! :P

                  All the best,
                  Lynn
                  Lynn Stewart
                  HOCM 4/2002
                  Cleveland Myectomy Crew 8/2002

                  Comment


                  • #10
                    Re: Soon to be fixed?

                    Nicole,
                    I see your on a fast track here and know that you must be very concerned. This much I can tell you for sure - You are in great hands and you will be treated with respect during your stay at Cleveland.
                    If you want to talk before you go send me a Private Message with your number I would be happy to call you over the weekend.
                    Be well,
                    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


                    • #11
                      Re: Soon to be fixed?

                      Nicole,

                      I had my myectomy in Cleveland las August 28th. I live in Indianapolis, so the trip was about the same as yours would be, and believe me it's worth it.

                      I wanted to mention the insurance issue. At the time, I was on a local HMO here in Indianapolis. Needless to say the Cleveland Clinic was not on the insurance plan. My primary doctor got the HMO to agree to an analysis appointment only. There are a few doctors here who could do the surgery however it was real obvious they did not have alot of experience.

                      After Dr. Asher in Cleveland mentioned issues with my mitral valve as well as the myectomy, I knew I would not have the surgery locally. I asked the local surgeon to write a letter to the HMO requesting I go to Cleveland. Instead he called them and said that is where I needed to go. The next day I had my approval. Work with the insurance company, it may work.

                      I have too young boys (8 and 5 at the time) who stayed home with grandpa and a bunch of fabulous neighbors. My wife was alone and scarred, but if you go back on the message board to that time you will see that thanks to this site we got together with other HCMA members of the Cleveland Myectomy Crew. My surgery was the day before Lynn Stewart and Tim Stewart was a real support to my wife especially when I had problems after surgery in the CCU.

                      Sorry for the long post, but I remember being where you are and wanting any and all information. Just remember, this is your life and major major surgery you deserve the best available treatment. In my book that is Cleveland or one of the speciality centers that Lisa can recommend.

                      Jerry Salzman

                      Comment


                      • #12
                        Re: Soon to be fixed?

                        HI JERRY! long time no see! How are YOU???

                        Sounds like your doing well. Send my regards to your 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

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