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Haematology appt in Nov

Posted , 4 users are following.

Chelle69
Chelle69

Hi All

Just received appt to see haematologist next month after being diagnosed with HH in Sept

I wondered if they also take blood whilst I am there or is it just to discuss treatment? 

Did ask my GP but she wasn’t sure if they blood let whilst I’m there or not

1 like, 9 replies

9 Replies

  • eric89660
    eric89660 Chelle69

    Posted

    I saw the haematologist at Manchester and had the first venesection straight afterwards but I don’t know if they all do that. The gastroenterologist kept me waiting months,though,hence the trip to haematologist.
  • Primrosegirl
    Primrosegirl Chelle69

    Posted

    Hi Michelle, so pleased to hear you are seeing the haematologist at last! In my case when I first went to see him, he called the nurses to ask them to do my first venesection there and then. So if that happens to you, just be sure you have drunk plenty of water and that you have eaten something. I hadn't, so had to wait and go back another day. Good luck.

    Jen xx

    • Chelle69
      Chelle69 Primrosegirl

      Posted

      Hi Jen

      How are things with you 

      Thanks for the advice I will make sure I’ve eaten and take a couple of bottles of water with me when I go for the appt. What about you how’s your treatment going and how many venesections have you had now? Hope it’s helping you feel better x.  I’m hoping that they will do my first venesection while I’m there,fingers crossed! Will keep you posted

      Take care for now

      Michelle xx

       

       

    • Primrosegirl
      Primrosegirl Chelle69

      Posted

      Hi Michelle, I had my 4th venesection today, mostly I have felt fine after it, but today I think I tried to do too much and felt very groggy, so am resting until I feel a bit better. Also my haemoglobin was down again so that might be the reason. The time before last it was also down at about the same level as today and they only took half a pint. .., today though they decided to take the full pint!

      I don't think I really feel any different so far but let's hope it is doing the job!

      Keep me posted with what is happening with you xx

    • Chelle69
      Chelle69 Primrosegirl

      Posted

      Hi Jen   Sorry for the late reply I’ve just recently bought a new puppy and she’s keeping me very busy!  I wanted a new furry friend to get me through having this dreaded HH and to help me stay positive and  keep me active as I can’t do the exercising that I used to do to keep in shape, although not sure if I’ve done the right thing after hearing how you feel after having the venesections done!  How are you today? Hope your feeling a lot better and have much more energy after taking it easy and resting yesterday x wonder why your Hb seems to be low a lot lately too? Does it change a lot? Do hope it’s all eventually helping you feel better having the venesections done x  I’m just waiting to see the haematologist next month and have got an appt for an echocardiogram (ultrasound scan of your heart) in the morning on the same day!  My eye sight seems to be rapidly deteriorating lately I’ve realised and I have yellow on the whites of them both, I wonder if it’s connected to the HH?? do you have any problems with your eyesight sure it’s this causing it. 

      Big hugs for now and hope your feeling well today Jen xx

       

    • Primrosegirl
      Primrosegirl Chelle69

      Posted

      Thanks Michelle I feel so much better now after a good night's sleep.... A little puppy how lovely I bet she iss keeping you on your toes!

      No I don't have a problem with my eyes, let's hope when you get started they will improve. Big hugs to you and your baby girl, Jen xx

  • ellen12819
    ellen12819 Chelle69

    Posted

    Hi Chelle,

    I saw a Heptologist, he discussed how I got it, and who else needed testing and my first Ven was the following week. I am glad it is all being sorted for you at least the ball is rolling. My sister had her first test in July waited eight weeks to have the DNA then only last week told she had it... no appointment is forthcoming yet.

    • Chelle69
      Chelle69 ellen12819

      Posted

      Hi Ellen

      What is a heptologist? I was going to ask at my appt with haematologist as to how my family go about getting tested for this.

      I do hope your sister hears something soon and gets her appt. I know how she feels everything is such a waiting game for us all now and the GP’s don’t seem to know much about it and offer much advice on ongoing treatment etc 

      Best wishes to you and also to your sister on getting her appointment very soon

      Good luck xx

       

    • ellen12819
      ellen12819 Chelle69

      Posted

      Hi Chelle,

      He is a gastrologist and head of Heptology. So liver, stomach specialist.

      It isnt really a blood complaint we have, it is metabolic disorder/condition/ disease.

      Patients seem to be refered to several different specialists. Being as liver, heart and gut can cause fatal conditions from the iron, they sent me there. They have only been using venesection to help since 1998 so no... GP's dont on the whole know much and most dont know anything. But they hand us over to those that monitor the effects and whip the toxic blood away. Many dont discuss it so not enough people know about it.

      Your parents, siblings and yoyr children need to go to the Gp say you have it and they need to tell them they need a DNA and aa test for high iron.

      They wont be offered it and need both to see if they are carriers and if they have it themselves. Good luck to you too. I am i Suffolk Uk each area does things differently or so it seems. But at least we can be treated.

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