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First appointment tomorrow

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Chris8968
Chris8968

I was diagnosed with hereditary hemochromatosis in September during a pre op blood test and have my first appointment with hemotologist tomorrow. What should I expect? Any questions I should ask? Will they start taking blood during this appointment?

1 like, 10 replies

10 Replies

  • sheryl37154
    sheryl37154 Chris8968

    Posted

    Have you had a genetic test yet?  If not, that should be done.  Ask for printouts of all your tests so that you can educate yourself about results.  Contact your country's hemochromatosis association/s and ask for info to be sent to you.  Look up their websites, find out about support groups.

    Educate yourself as much as possible before you go, so that you will know what questions to ask that you do not understand.  Get to understand what important blood test levels mean to you.  Make notes on how you feel at certain levels of ferritin etc.

    Whether they will take blood on that day depends on their processes, and if the hemotologist is safisfied with the blood tests that have already been done.  If you have copies, take them with you.

    Good luck.

     

  • lisa23155
    lisa23155 Chris8968

    Posted

    Hi Chris, hope it goes well tomorrow. They may make another appointment for you to be venesected as sometimes this is another section of the dept but I should be prepared anyway. Best to eat well in the morning and be well hydrated and not to worry about it as much as you can. Ask the haematologist about your levels, ferritin and also ask them to check your transferrin saturation ( they don't always do that) what they will be doing to get your levels down and if you need to explore the state of your liver. You don't say what your ferritin level is now? On another note I would look to join the Haemochromatosis Society and follow their website and fab Facebook pages, so much information and support there going forward. Good luck 

    • sheryl37154
      sheryl37154 Chris8968

      Posted

      Did you have avascular necrosis (hips)?  Was this your first symptom that you were aware of, or were your earlier complaints of haemochromatosis symptoms ignored?

       

    • Chris8968
      Chris8968 sheryl37154

      Posted

      My hip replacement was due to a military service connected disability, (jumping out of airplanes can be bad for your joints). I never knew I had hemochromatosis until my first pre op blood test indicated elevated liver enzimes. They tested for everything and finally figured it out a year later.
    • sheryl37154
      sheryl37154 Chris8968

      Posted

      Sounds like a common problem - I know someone else who had a hip replacement for the same reason.  Later on, he also found out he had haemochromatosis from another symptom.
  • Chris8968
    Chris8968

    Posted

    Appointment went well. Ferritin level at 1887. They did my first venesection today also and scheduled me for once a week.
    • sheryl37154
      sheryl37154

      Posted

      That was supposed to read 'worse' treatments!!!!

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