Recent Posts

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Discussion / Re: Blood loss
« Last post by Matt on May 16, 2010, 11:15:00 PM »
Good question, unfortunately I have no idea as I don't tend to count (but to my recollection it varies anyway). I do know that it's very rare for me to go without a nosebleed for a day though.
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Discussion / Blood loss
« Last post by davidm on May 15, 2010, 05:02:40 PM »
Hi everyone I have HHT and also have a lot of nosebleeds a day just recently they have quietened down a bit but the other day they came back with a vengeance and bled more than I can ever remember what I am interested in is the amount of blood that most people lose either each bleed or a daily amount and then I can compare wether mine is about average ,mild or severe  any help appreciated
 
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Discussion / Nasal skin graft
« Last post by stevesmash on May 05, 2010, 08:38:08 PM »
Has anyone had a skin graft to stop the nosebleeds? I am heading towards my third week since the op on one side with laser treatment on the other(2nd time). So far so good - not even a dribble! Just wondering if anyone has any long term news/advise.
Regards Steve.
Its now getting on 10 weeks since the graft. By now with the other ops(clipping of artery and lazer) I have been back to square one. But I must say that touch wood the graft is holding up. I have have 1 or 2 small trickles nothing that cant be caught in a tissue rather than a bucket. The lazered side has had a few small leaks but on the whole so far so good.
Has anyone else had a graft and had a good result? Must say my leg took a while to heal up and was just a tad sore for a while.
Good luck all.
Regards Steve.
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Discussion / Re: HHT affecting the womb!
« Last post by aimee on April 20, 2010, 09:15:54 PM »
I have heard of AVMs in the uterus which would give you very heavy periods.  I suppose if they discover an AVM in
your daughter's uterus they will want to make sure she doesn't have HHT.   
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Discussion / HHT affecting the womb!
« Last post by Carolanne on April 12, 2010, 06:10:16 PM »
Hi everyone,
Has anyone heard of HHT affecting the womb, especially after pregnancy?  My daughter is being looked at for very heavy mentrual bleeding and the consultant was to test for HHT.
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Discussion / Re: continual low HB
« Last post by Carolanne on April 12, 2010, 06:01:56 PM »
Hi,
I too have a constant low HB, due to gastric bleeds.  These started after pregnancy 33 years ago and have never got any better.  I have had my stomach and duodenum ones lasered, but they do return, as they have on my lips and tongue and in my nose.   My nose bleeds are manageable and not only occur spasmodically. 
Eventually, having lived on an HB of between 5 and 8.5, averaging 7.5 for all these years, I was referred for intravenous iron weekly.  After over 2 years, I have finally got a ferritin (iron stores) level of between 49 and 65.  We aim for 100.  My HB has still gone up and down from 7.8 to 10.2 and averages 8.5 now.  The trick is to get some iron stores for the HB to pull on.   Without them your HB will continue to plummet.  I have also noticed that stress and infections pull on my HB.  I dont know why and neither do the consultants. 
This is the best knowledge I can offer you.
Regards...........
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Discussion / Re: continual low HB
« Last post by stevesmash on March 24, 2010, 07:52:55 PM »
Hi, I may be teaching you all to suck eggs, but i have changed my iron tabs to slow release "ferrograd" for 2 month and no stomach probs!
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Discussion / Re: continual low HB
« Last post by Erica on March 10, 2010, 09:44:04 PM »
Hi
I have been attending the hospital for years now. I am lucky in that my ENT doctor diagnosed HHT and refered me to heamatology unit at the Royal. They have been terrific.  At one time my ferratin level was undetectable but at my last visit it was the highest it has been in years. I have had several laser procedures to both nostrils but the last one just made things worse. I had Youngs Proceedure to the right nostril hence the better levels last time.
KEEP TAKING THE IRON TABLETS!
You do not realise how tired a low HB level effects you. You begin to think it is normal. It wasn't until mine were good that I realised being breathless climbing a slight incline was not normal
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Discussion / Re: Has anyone lost their job because of their HHT?
« Last post by dean ryan on February 07, 2010, 09:17:37 PM »
thanks for the reply i am getting employment and support allowance which i think is the same. Had to go for a medical, my nose bled for 40 minutes while i was waiting and still was refused saying i am fit for work, i have appealed so am now waiting for the outcome of the appeal.
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Discussion / Re: Has anyone lost their job because of their HHT?
« Last post by stevesmash on February 07, 2010, 06:16:57 PM »
Sorry to hear about your job. Would you be able to get incapacity allowance?
Good luck Steve.
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