Recent Posts

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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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Discussion / Re: continual low HB
« Last post by stevesmash on February 07, 2010, 06:14:39 PM »
Hi Sue, My HB levels never seem to get above 8. Ive had transfusions & lazer treatment with the constant use of iron tabs. Every time the levels seem to rise I am knocked back with a big bleed. Has your GP refereed you to the heamatologist and has any further treatments been advised. I would seriously think twice about the Young proceedure as I dont think I could cope with having my airways completely blocked off. The Tranex acids help stem the flow of blood but still go to work with limited confidence of keeping a clean shirt.
Good luck Steve.
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Discussion / Re: young procedure
« Last post by johnm on February 02, 2010, 03:06:34 PM »
Hi
I appreciate your reply and I wish you continued success! I'm hoping I can tolerate it! But it would be a dream come true not to bleed anymore!
Thanks
John
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Discussion / Re: young procedure
« Last post by philbarto on February 01, 2010, 08:07:37 PM »
Hi
   Like you i was suffering from severe nosebleeds and I too was being transfused regularly  I used to nosebleed 7 8 times a day and on the worst the blood would go down my throat and in to my stomach probably for the best part of 2 hours until I was sick then a proper mess all over the bathroom . Them I had the youngd procedure two years ago not one single nosebleed since at the moment my HB is 10.1 . Side effects obviously you can only breath through your mout and whilst asleep this is automatically taken care of by nature you dont wake up in the night gasping for air, it is alittle different but you get used to it. Smell you lose your sense of smell and also a bit of your taste other than that enjoy the relief of no more nose bleeds A Doctor at the Hammersmith ENT has done 27 youngs procedures and every one a suceess so take heart lets know how you get on best of luck   Phil
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Discussion / Re: young procedure
« Last post by Matt on January 30, 2010, 08:56:04 PM »
Welcome to the site.
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Discussion / young procedure
« Last post by johnm on January 28, 2010, 04:59:19 PM »
hello to everyone
This is my first post by the way. I am having the young procedure in 2 weeks and I am frightened! I am so afraid that I will not be able to handle the side effects! I realize that I need it to stay alive, but I still have major issues with it! My hemoglobin , like the rest of you I assume is very low (3.9 last week) I get transfused every week yet I am having trouble accepting the procedure!!! I need some help with this, please! I am afraid that I will be gasping for air all the time! I also worry about everything from sneezing to eating to drinking from a straw! Am I being unrealistic? Is it eaassier to cope with than I think? Please feel free to email a response if you wish. 
Sorry, my name is John and I live in Massachusetts. I am 57 years old. Help
Thanks
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Discussion / Re: Has anyone lost their job because of their HHT?
« Last post by philbarto on January 23, 2010, 07:51:51 PM »
see an employment law solicitor I believe the first interview is free and he will guide you to further your claim also use your union solicitor if you are a member
regards   Phil
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Discussion / Re: continual low HB
« Last post by philbarto on January 23, 2010, 07:48:07 PM »
HB haemaglobin or red cell blood count male 15 to 16 female 12 to 14 no of red cells to 100mg of blood low blood count breathlessness etc
SUE read member philbarto post about youngs procedure which should rid you of nosebleeds
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