Not coping and needing some one to talk to

[tweetypie]

Hi this is a bit of a long shot.
We have a family history of HHT, my mother has been suffering really severe nose bleeds for quite some time now and is trying to get refered to Hammersmith but the GP is reluctant to send her  .
Our local hospital has suggested the youngs procedure but she is scared as she is very much a nose breather.
She is getting more and more depressed and I think if she could speak to some one who is suffering the same problems it may help her.
We live in Wiltshire and do not know any other people with this condition.
Family history:
Grandmother had condition
We think her father may of had hht.
My mother has it
I have been DNA tested and have it, at present I do not have symptoms
My daughter DNA tested and has it and at present does not have symptoms
If any one would be interested in having a chat with my mum please get in touch (she does not have a computer)
Thanks for taking the time to read this 

[tweetypie]

SORRY posted in wrong place, Im not up to speed with these sorts of things, so I do apoligise but havnt a clue how to move this.

[Matt]

No problem, moved it for you

I wish you luck with this, hopefully someone else will reply volunteering their help, I believe there are a few here who have had the Young's procedure done (EDIT: The following topics may help - http://www.hht.me.uk/discussion/youngs_peocedure_116.0.html & http://www.hht.me.uk/discussion/young_procedure_123.0.html).

Unfortunately I would not be the best person myself as I'm not the most talkative of people, and my experience is minimal really, mostly just blocking my nosebleeds with tissue, having the operation to remove telangiectasias every couple of years or so, and just putting up with the low oxygen levels really.

Overall, I still don't really understand much about HHT - partly due to not taking the time to properly read up on it, but partly because any time I have attempted to, it seems to fly over my head - all I know is that there's people who do understand it (read: various Doctors) and they'll help me by doing what they need to for me.

If the GP is reluctant to refer her, have you already tried asking any of the people at the local hospital who may be more familiar with it? Mine was discovered during an unexpected hospital stay (unexpected because they kept me in when they discovered I had low oxygen levels, and it was a completely different reason I'd visited!), and it was one of the Doctors there, rather than my GP, that ended up referring me a few months later to one of the specialists.

[tweetypie]

Hi thanks for the reply Matt.
It seems its the G.P that has to refer, some thing to do with funding and budgets.
I was wondering if there is a plug of some sort just to close the nostrol off, as a trial before going ahead with youngs procedure.??

[terry]

There are plastic inserts that can be put inside the nose - I couldn't have it done as I have holes between my nostrils due to previous surgery.
She really should insist on being referred to Hammersmith - perhaps another doctor in the practice would be more sympathetic? - or transfer to a different GP.  We all have the right to change GP without giving a reason.
Terry.

[tweetypie]

Thanks Terry
Just a few questions
Have you used the inserts yourself ? if so have they helped ?
Are they made especially for the individual ?
Isn't plastic a bit hard ?   
Thank you
Michelle

[stevesmash]

Hi, Looks like time to change your GP. There are a few procedures to try before Young's. If you cant get referred to Hammersmith try Prof V Lund at the Royal ENT in London. Your GP must refer you for further treatment at your local ENT.
I have had Laser surgery & Nasal Skin graft along with Tranexamic Acid pills and my condition is very much under control and staying in full time employment now the anaemia has been addressed.
Hope this helps.

Cheers Steve

[Carol Lane]

Hi,
I would be happy to talk to your Mum.  I live in Norfolk (England) and my HHT started from pregnancy 33 years ago.  I have nosebleeds and GI tract spots that bleed chronically, making me very aneamic.  How bad are your Mum's nosebleeds?  If you want to send me a message with a phone number and convenient time, I would be happy to talk to your Mum.
Regards.............

[terry]

No, I have not had the inserts - I would be unsuitable as previous attempts at surgery have left me with large holes between my nostrils.

Terry.

[surefire]

Hello Fellow Sufferers,

Brian D. here. For over 50 years I have suffered moderate to severe HHT nosebleeds. 100+ cautery's + 30+ major hospital surgeries. Multiple Dailey bleeds. 50+ years of burning left me with 8mm hole burned thru my nose. I finally went to the HHT Medical Center @ University of Utah in Salt Lake City, Utah. After 2 days of testing I met Dr. Johnson, head of surgery. He said, keeping the fluctuating air tempatures away from the telangientasia's was the key to lowering the incidents of bleeding. He then installed a Soft LATEX plug with large flaps on both sides in the hole in my nose, and put a permanent stitches in the flaps to keep it secure. WOW! Nosebleeds went down 98+%. I went over 60 days with none at all, Now I get a minor 60 second bleed every week if I sneeze. From having surgery every 3 to 4 months.....I have gone 16 months with out any surgery which is a 30 year record.

So before you have your nose sealed off, check into other alternatives. My quality of life has gone up 500%

Brian D.

[janine]

 
I am new, its all mind blowing.  Me my father and now my grandmother, who has taken seriously ill with this silent control mechinism thats in our body.  After doing some research Im wondering if this is why my brother died at the age of seven from pulmnery artery defect. 
does anyone ever get fed up of people frowning about the time taken off sick at work?  I suffer from low blood pressure and anemia, but have a suppressed immune system having phnuemonia twice.  Luckly my nose bleeds slowed right down at puberty, but will start again at menopause.  As before when I did have nose heavy nose bleeds oh my word, every day as a child at school, shopping my friends thought it was disgusting and in the middle of eating how annoying this was and draining. if anyone has anymore information for me to what to expect in the near future please can you let me know my age is 35 female.
does diet work? and fitness?

[Matt]

Welcome to the site janine.

[lenny]

I would be more than willing, to speak with your mother, heart is prevalent in our family and I myself am a sufferer and can well understand how your mother is feeling. Both me and my sister have contacted fellow sufferers on the phone and by e mail and ,letter it really is good to talk. You can contact me any time you want by e mail at first, then take it from there whenever you want. I do hope your mothers condition improves in the meantime, ours is a very depressing condition, and talking to others does help.

[colinstares]

Hi tweetipie, Ihave just registered with this site, my name is colin, me and my brother,mother and grand dad all suffer with this hht and nose bleeds.We also live in wiltshire(swindon).
My brother had a very bad problem with nose bleeds and was refered by his gp to see Prof valerie lund at the Royal national nose,ear and throat hospital, she performed a rhinoplasty closure of both nostrils and this has changed his life altogether and he now leads an almost natural lifestyle.
My mother and I have also had this operation and believe me it has made a wonderous change to our lives, yes you have to get used to not smelling things through your nose but i soon got used to my tasting smells instead if that makes sense, but this is a small price to pay for not having to suffer from dibilitating nose bleeds and time off from work, I can now do most things and don't have to worry about carrying yards of tissues to bung up my nose when it bleeds. I had before this operation had my nose filled with liquid silicon to make plugs for my nose by my local hospital, but these irritated it so much that it was impossible to kep them in. I then took my brothers advice and got my gp to refer me to Prof lund in london(your local practice has to fund this i think, i might be wrong about this but your gp does have to make the referal, so keep on at them!!) Her email address is V.LUND@UCL.AL.UK drop her a line for information. if you or yor mum needs to talk, drop me an email at colin.stares@btinternet.com.
Good luck

Kind regards

Colin

[janine]

Hi all
Its the 35 year old not coping.  Its been a long time sinse Ive been on.

The out come of my grandma been on and out of hospital and a big struggle.  She had bleeds on her stomach, severe aneamia of a count of2 and two lots of lazer treatment.  In the end she had a bleed on her heart which caused a bloodclot on her stomach and her leg, she was unable to survive this.
Me and my father have been diagnosed with HHT type 2 of the gene defency.  Something else I would like to know from other woman is that have they had premature babies like my self and my consultant has explained to me that my bleeds will increase from age 35-40 and can woman have bleeds down below with increase aneamia.