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Just want to share my story

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Debora from Brazil Find out more about Debora from Brazil
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  • Just want to share my story

    Hello everybody, some of you might have seen me around although I've only been a member of this site for a couple of weeks. Anyway, I've been advised by Lisa to share my story here. I'm a 39 year old Brazilian who has been through quite a lot and unfortunately, there's more to come. So, here it goes and I hope that by reading about my experiences regarding heart surgeries, you'll feel more encouraged to go through it yourselves if that's your case.

    HEART HISTORY

    My story begins in 1973 and has not yet run its lengthy course. However, I can confidently say that although the situation scares me at times, I also find it fascinating and it greatly arouses my curiosity. Therefore, there are times when I wish to become ensconced in the whole subject of cardiology, especially the mitral valve. Despite not having access to all the pertinent information concerning my surgeries (as Brazilian doctors, especially the older ones, are not always willing to share everything they know with their patients) I will try to outline as much as I can.

    I was an irritable child who tended to get worked up over the least little thing, flying off the handle frequently. When I was seven, I began to feel a lot of pain in my joints and to cough ceaselessly. At the time, doctors took this to be growing pains and a persistent flu. In those days, people did not have as much access to information on how to deal with this or how to recognise certain symptoms and, as was normal at the time, the situation was not taken so seriously. Then I got worse and went to see my paediatrician, who in turn recommended that my mother should take me to a cardiologist (Dr. Siloá Singer Bonescki). She had been a member of Professor Dr. Eurícledes Jesus Zerbini’s team at the Beneficiencia Portuguesa Hospital in Săo Paulo, so I was in good hands. She diagnosed my condition as rheumatic fever, already compromising my mitral valve. I remember that I spent the next two years in bed and being put on a salt free diet owing to the retention of liquid in my system. At this point, my heart was enlarged and I was on fifteen types of medicine, none of which had any positive effect. Therefore, I was sent to Săo Paulo to see Dr. Zerbini himself who was very straightforward. After running a battery of tests, he informed me that my chances of survival were minimal even with surgery, but without surgery I would be unlikely to last two months. Clinically, I was in a terrible state, weighing at age ten only 20kg (about 45 lb). I had surgery on 14 August, 1975 following a month in hospital. During surgery, a lesion was found on my tricuspid valve, which was promptly corrected. Nevertheless, setbacks were inevitable but with no permanent damage except an enlarged left atrium. My heart stopped beating twice and my kidneys failed for eighteen hours. I only came round in the ICU after two days and remained there for three more until I could be transferred to my room where I was carefully looked after for another month before being discharged. As mine was the first successful case of its kind in the country, people who didn’t even know me came to visit, and doctors from other teams came to have a look at the "Zerbini case" that was being talked about.

    As time went by, the duramater valve that had saved my life for so many years began to show signs of failure, and on 15 April, 1980 I had surgery once again. This time, everything went well as the surgery had now become somewhat more routine. Once again, I went back to my normal life and my studies which had been seriously disrupted owing to all my health problems. I started to learn English and in 1983 when I began to correspond with pen pals from around the world through the Queen Fan Club, I met Robert from Scotland, who has now been my husband for nineteen years.

    In 1995 following an echocardiogram, I was told by my cardiologist Dr. Ademar Moraes de Souza that I would have to have my valve replaced once again. We had planned to go to Scotland early in January, 1996, but that trip had to be cancelled. I was very upset about the whole thing as it interrupted other plans. I was trying to get pregnant with my first child, and this factor affected my choice of valve and I opted for a biological one (bovine pericardium). On 19 December, 1995 I was back in the operating theatre in the hands of Dr. Francisco Diniz Costa who headed the team at Santa Casa de Misericórdia hospital in Curitiba.

    Well, I never got back to Scotland after that, but I did get pregnant and my daughter Bruna was delivered by C-section on 28 February, 1997. However, last week, the news that I have dreaded was given to me following my routine exams: mitral valve cusps slightly thickened with an opening of 2.99cm, although entirely normal and working well. I have been through this before and have formed an opinion: if you can’t beat your enemy, join him. Like everyone, I have my ups and downs and grab onto anything that helps me feel better or brings me hope. This is the advice I can give to anyone in a similar situation. Work with your doctor and nurses, especially while you’re in the ICU. They are not to blame for your condition and can be of great help in your recovery because they treat you well and really care about you. To them, you’re not just another statistic.

    If you want to know more about me, go to http://profiles.yahoo.com/deboraginastewart1

    BTW I first wrote this over 6 months ago, but on my last visit to my cardio, after getting another echo done, he said that very little has changed and there's no need for surgery for the time being. I found out about this site from another member who's also a member of VR.com. Ever since I was told by the doctor that my now nearly 9 year old valve is calcifying, I've beeing doing research maily on the mitral valve and have learned a lot. Being part of a support group has also made a very big difference to my life, otherwise, I would probably have gone into a big depression by now. Thanks for reading and I hope to see you around.

    Débora from Brazil
    http://uk.geocities.com/deboraginastewart1
    http://uk.f2.pg.photos.yahoo.com/ph/...art1/my_photos
    View my heart history too.

  • #2
    Re: Just want to share my story

    Thanks for sharing. It is good to know that there are others facing similar issues to ours and also to know that we have a great deal in common with the NON HCM heart pts.
    good luck with you mitral valve!

    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


    • #3
      So nice of you!

      Thanks for your very kind words, it's always good to know that people do care. There are moments, especially when I'm in my bed, that negative thouhgts and fears cross my path, but most of the time, I feel ok and hopeful that everything will be ok when the time comes.

      Débora from Brazil
      http://uk.geocities.com/deboraginastewart1
      http://uk.f2.pg.photos.yahoo.com/ph/...art1/my_photos
      View my heart history too.

      Comment


      • #4
        Re: Just want to share my story

        Thanks for sharing. It's wonderful that you are getting good treatment. We're glad you're here.

        Reenie
        Reenie

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

        Comment


        • #5
          Re: Just want to share my story

          Debora,

          It's great to have you here with us! Thanks for sharing your story.

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

          Comment


          • #6
            Re: Just want to share my story

            Thanks so much for welcoming to the site, since I'm not really familiar with the members here, I don't really know what to say, but I hope you too have managed to get the support and help you need here. You're all great people and I'm sure we'll get on great!

            Débora from Brazil
            http://uk.geocities.com/deboraginastewart1
            http://uk.f2.pg.photos.yahoo.com/ph/...art1/my_photos
            View my heart history too.

            Comment


            • #7
              Re: Just want to share my story

              Debora ,
              Welcome to our site. You have already experienced quite a lot in your life. You are a survivor ,it is evident.
              I believe others can learn from what you have experienced.
              Best Wishes.
              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


              • #8
                I feel at home here!

                Hi Pam and thank you too for replying. I hope you're doing well yourself. See you around and take care.

                Débora
                http://uk.geocities.com/deboraginastewart1
                http://uk.f2.pg.photos.yahoo.com/ph/...art1/my_photos
                View my heart history too.

                Comment


                • #9
                  Re: Just want to share my story

                  Debora, I want to welcome you also. I'm sure there will be times when your expertise in multiple languages will be a great help to this message board. Hope things continue to go well for you. Linda

                  Comment


                  • #10
                    Languages

                    Hello Linda, The only two languages I can actually speak and understand are Portuguese, which's my own, and English. I can understand a lot of what is said in Spanish too, but can't speak or write it anymore. As for my German, I'm able to recognize a few words and expressions, but since I haven't used any of what I've learned for a very long time, I've forgotten practically all of it. BTW, I wonder if you know of any members on this site whose mother language is Portuguese or Spanish. If you do, please, let me know. Thank you

                    Débora.
                    http://uk.geocities.com/deboraginastewart1
                    http://uk.f2.pg.photos.yahoo.com/ph/...art1/my_photos
                    View my heart history too.

                    Comment


                    • #11
                      Re: Just want to share my story

                      Debora, Let's see if anyone sends a private message to you. You might get a response, I know we have many posting here from different countries. Linda

                      Comment

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