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Support

Posted , 6 users are following.

philx
philx

Hi all

This is aimed at people who are and have had phlebotomy, what support

From the hospital did you receive, I was diagnosed 1.7.16,

First venesection was 6.7.16,I've had weekly one's since,in this time I've

Only seen the plabotomist performing the venesection, although these

Are excellent, they know very little about hemochromatosis, and cannot

Answer any of my questions, I've asked my GP questions, but they appear

To know little about our condition, and tell me to ask at the clinic???

Ask who,I have a follow up appointment 19.8.16 after 2 more venesections

But surely there should be a clinical support worker to explain, how you

Are progressing, and explain results etc it's daunting enough having to

Have a venesection weekly,it would be nice to have someone to talk to

Cheers philx

1 like, 9 replies

9 Replies

  • mike80628
    mike80628 philx

    Posted

    Hi Phil. I find it's me that educates everyone about the condition. The nurses etc are all brilliant, but know very little about the condition. My consultant is brilliant, lovely man, but he doesn't know the first thing about all the dietary side of things. It's very difficult to actually chat to anyone properly..so I agree with you.

    The only people who have been brilliant, are the Haemochromatosis Society. When I've phoned them for help and advice, they know everything, and have been very supportive. They are the ones I recommend to everyone...Mike.

    • philx
      philx mike80628

      Posted

      Hi mike

      This is totally wrong and should be rectified, you have being having

      V/sections a long time and assistance should be given from day one.

      At the university hospital b.ham they have a

      Haematology clinical nurse specialist team.I have emailed them

      Asking them if they know and offer support for patients undergoing

      Treatment for hemochromatosis, I will let you know the outcome.

      Cheers phil

  • laura13882
    laura13882 philx

    Posted

    Hi

    I must say my mum and I have had a totally different experience.

    I was diagnosed in July and mum in May. The haematology depth we go to is brilliant and have always offered us both support. It's unfortunate that you have not had the same experience. She sees the same nurse every fortnight and gets her blood test numbers each time so she knows exactly where she's at. We also have both been given diet advice and have a number to phone our consultant anytime.

    I wish other people could get the help we have. I hope you find the support you need and this forum is a huge help also.

    Laura

    • philx
      philx laura13882

      Posted

      Thank you Laura

      Totally agree the forum has been a great sounding board for me

      To ask questions and to read other people's experiences of this condition

      Sorry to here both you and your mom have been diagnosed with this

      Are you both having venesections together??? It's small consolation

      But at least you can help each other through this.do you both have similar

      Levels????I hope you both get through this without to many problems

      Cheers philx

    • laura13882
      laura13882 philx

      Posted

      I'm starting mine next week my levels are a lot lower than hers so I'll have to have less venesections carried out.

      Mum is 72 years old and has heterozygous haematomachrosis and hers has been late in diagnosis as she's had so many other health issues that aren't related to sort out first. I'm 33 and I'm homozygous for c282Y . I only recently found out it is common in my dad's side of the family.

      It's just a whole new thing to me and it explains a lot of my symptoms of tiredness and sore joints so hopefully this will all ease up over time

      Laura

    • ruth51315
      ruth51315 laura13882

      Posted

      Hi Laura,

      I was diagnosed fairly recently too. (Homozygous H63D)  I am being refused venesections because I am told by my GP and the liver specialist he referred me to, that my ferritin level isn't high enough.  The highest it has been is 277 with a saturation percentage of 48%.

      My most recent ferritin level is down to 226 but my saturation has risen to 52.6%.

      You say that your levles are a lot lower than your Mum's and I was just curious as to how low.

       Please don't think I am being nosey.  I am asking because I do know of other people who have been offered venesections  with levels lower than mine,  whilst I am having to fight for treatment.  Any info I can give my GP might help me plead my case.

      I have got just about every symptom haemo causes, but no medic seems to want to know.

    • laura13882
      laura13882 ruth51315

      Posted

      Hi Ruth,

      My levels were at about the 250 mark in May and I'll find out what my levels are on Thursday.

      I've been told my levels are to be taken down to 50 then I get transferred to the blood transfusion service to donate 3 times a year to keep it at that with an annual check with my haematologist.

      When I had the genetic test and got the results the haematology dept my mum attends asked me to get a referral sorted so that I'm under their care from day 1 rather than an annual check up with my GP. This was all done within 2 weeks and my first venesection is Thursday. My family history shows it is dominant in the generations on both sides. I have 4 cousins all having venesections and my mums mum died of liver disease.

      I have joint problems but I had put that down to my job as I do lot of climbing so thought it was wear and tear and my tiredness down to shifts. It's unfortunate that different health boards have different views on when venesection should or shouldn't be done. I've altered my diet and stopped drinking and hopefully I can keep my iron under control that way.

      Laura x

    • ruth51315
      ruth51315 laura13882

      Posted

      Hi Laura,

      Thankyou so much for replying.  All the info I can gather from other people is so helpful re the treatment they are receiving.  I don't think that it is right or fair that different care trusts have such differing criteria in the treatment of haemo patients.  My liver is already severely scarred and everything I have read, states that even damage as bad as mine, can benefit from venesection.  I have another appointment with my GP this Friday so I shall be asking him why I haven't been referred to a haematologist.  It has been suggested that I just try to donate at a blood bank, but I feel that the medics need to appreciate how serious haemo can be and I don't feel inclined to let them get away with ignoring my problem and refusing to treat it.  Treatment should be standardised across the board.

      I hope you soon begin to feel much better.  And thankyou again for replying.

      Take care,

      Ruth

      x

      xx

    • ruth51315
      ruth51315 laura13882

      Posted

      Hi Laura,

      Just wanted to wish you well for your phlebotomy today.

      Take care.

      Ruth

      x

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