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Mitral regurgitation and also Myelofibrosis.

Posted , 3 users are following.

eric78308
eric78308

I have Dilated Cardiomyopathy with Mitral Valve regurgitation, and also Primary Myelofibrosis. My cardiac doctor is telling me I need Mitral Valve replacement. This is a big operation involving open heart surgery.

However I also have high risk Myelofibrosis.

This must increase the risk of having open heart surgery and as I don`t have any symptoms from my heart condition I wonder whether I should tell the cardiologist I don`t want to risk the operation at this time.

I am aged 73.

0 likes, 11 replies

11 Replies

  • derek76
    derek76 eric78308

    Posted

    Have you spoken to a surgeon yet to get his opinion? If your mitral valve is likely to kill you first get that done. 

    I had my aortic valve replaced when I was 79. The odds were 18% of dieing during the operation or 90% of dieing in the next year if I did not have it. 

  • Valkyrie
    Valkyrie eric78308

    Posted

    First check whether it would be offered to you at a later date. Apparently doctors are concerned with doing major surgery as people get older. There may be a window of time in which they will undertake the surgery you are being offered. Find out so you can make an informed choice. Having said that, it might be good to ask why they are offering you surgery if you have no symptoms.
    • derek76
      derek76 Valkyrie

      Posted

      Many people probably the fortunate ones with with mitral and aortic valve problems have no symptoms at the time of diagnosis and see no need for the operation. I was diagnosed with aortic stenosis when having a thorough examination for something else. At that time my valve was functioning at less than 40% of normal and was told that I should have surgery within a year. It was about eight months later that I started to notice symptoms. The fitter you are at the time of surgery the better and all the time one delays the heart is having to work harder to pump blood.

       

    • eric78308
      eric78308 derek76

      Posted

      I was diagnosed in 2009 with Dilated Cardiomyopathy and mitral valve problems, and I feel just as well today as I did then.

      I didn`t visit my GP because I had any symptoms, I was invited to go for a health check because I hadn`t visited my doctor for over 20 years.

      It seems ther is nobody on this site who knows what the increased risk of an operation might be because I have Myelofibrosis. I have low blood counts and low platelet counts.I don`t suppose the cardiologists would know either, because they specialise in heart problems and nothing else.

    • derek76
      derek76 eric78308

      Posted

      A surgeon would know. Presumably there are Myelofibrosis. support groups who would have information. 

      When was your Myelofibrosis diagnosed if you had not been to a GP in twenty years?

       

    • Valkyrie
      Valkyrie eric78308

      Posted

       Well, i certainly had never heard of Myelofibrosis. i had to look it up. It certainly does sound like a nasty thing to have. I think you are right that cardiologists might not know but they usually liase with specialist dealing with any other conditions you might have. Is there any way you can speak to whoever  you see for Myelofibrosis to ask them the question?
    • eric78308
      eric78308 derek76

      Posted

      Myelofibrosis was diagnosed in August 2012 after a routine blood test to do with my heart. The blood test was abnormal so I was sent to hospital 2 days later, had a bone marrow biopsy straight away, and a week or so later was diagnosed with Myelofibrosis.
    • eric78308
      eric78308 Valkyrie

      Posted

      I`m not sure whether I have already mentioned it to him, but I will ask again next time I go to Christie hospital.
  • bobfr636
    bobfr636 eric78308

    Posted

    You should google myelofibrosis which would refer you to a hemotologist dealing with cancer of the bone marrow. But you should have a consult both the cardio and the hemo guys to see which should be done first.

    How come they can not talk to each other. You don't seem to have the medical training to make the decision yourself. The only advantage you have that you are still alive. When they tell you which one to do first jump into it. But make sure you going to have it done by a surgeon who does it routinely.  

    • eric78308
      eric78308 bobfr636

      Posted

      Google myelofibrosis to be referred to a hematologist?? I was diagnosed with myelofibrosis by a hematologist, and see a hematologist dealing with myelofibrosis regularly.

      Consult both cardio and hemo guys to see which should be done first ?? There`s nothing to be done about myelofibrosis apart from taking tablets  to control the symptoms, which I do.

      How come they can not talk to each other ? they probably do talk to each other but can the cardio guy guarantee that open heart surgery on me would be a success?

      Make sure I have it done by a surgeon who does it routinely ??

      First, there is nothing routine about having open heart surgery, and secondly, this is the NHS you are talking about, I don`t have a choice regarding the expertise of the surgeon.

       

    • eric78308
      eric78308

      Posted

      The latest news is that I`ve been advised that open heart surgery would be dangerous because they would have to use a heart/lung machine during the operation, and apparently they can`t guarantee that the  machine would be sterile. That could lead to an infection that could possibly kill me.

      So, it seems, there is no chance of me having heart surgery.

      I still feel well but get out of breath walking uphill. Also I have blue veins visible on my upper chest, which I understand are a classic sign of heart failure.

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