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21
Discussion / REVERSAL of Youngs Procedure
« Last post by Tracey on July 23, 2011, 09:41:43 PM »
Hi All

I had Youngs Procedure on my right nostrel about 6 or 7 years ago now.  It has been pretty successful until of late.  Now, I am submitted to daily multipul bleeds from the side that has been closed.  The bleeds are so fearce and fast that it pours down the back of my throat, almost choking me, leaning forward slightly is the only way I have found to cope, and it pours from both my open nostrel and my mouth.  Often then clotting either in the open side, or at the back of my throat, of which I have to remove because the bleed just does not stop until it is ready.

I have been admitted to hospital about 4 times now in the last two months.  On one occasion, my blood count was low, like many of you on here, and I ended up with having a blood transfusion on the Saturday and then another one on the Sunday.  They finally let me out once I was stablised.

Since then, the problem continues.  The consultant that performed the Youngs Procedure is very reluctant to reverse it.  He says that it is a "LAST RESORT".

I was wondering if anyone else has had experinces similar to this, and what they did or how they have been coping. 

I am having multiple bleeds in the day and night, and it just does not appear to let up  :(

All replies welcome.

Tracey  ;)
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Discussion / Re: Youngs procedure with HHT
« Last post by Tracey on July 23, 2011, 02:10:54 PM »
Hi Lenny

Like you, I too have not been on here for some time.  I had Youngs Procedure done to my right side some 6 or 7 years ago.  The left side has been kept open, on the understanding that one day, it too will have to be closed.  However, just lately, I have been getting the most horrendous nose bleeds and it is coming from the closed side, up over the back and out of my open side and my mouth.  The experience is, I have to say the worst ever.  Huge clots form in my nose or throat, and I have to encourage them out because the bleed continues regardless.  My consultant is reluctant to reverse the Youngs Procedure, but he does say that it is a last resort.

It took me what seemed like forever to get used to the closure.  But now, I am so low and fed up with the bleeding, and it is even worse than before  >:(

Tracey  ;)
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Discussion / Re: Just got my Genetic test results and i dont know what to make of them..help.
« Last post by Tracey on July 23, 2011, 07:50:28 AM »
Hi helroddz88

I have not been on here for a while and have only just read your post.  I am truly suprised that no one has left you a reply considering the post has been read about 120 times  :(

None of us on here are doctors or consultant so could not say if you have HHT or not.  However, having read your post it sounds very likely.  Personally I would keep going back and badgering the doc, the genetics dept and the consultant at hospital until you get the answers. 

If you are experiencing the nose bleeds and the red spots, that should be enough.  You also share a faulty gene, then to me that confirms things.  But I am no medic.

Keep battling forward.  If it is a strain that they have not yet dected, then you need to set a presendence with it.  There may well be others out there with the same gene as you that are having the same problem.

Good luck  :)

Tracey  ;)
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News and Updates / Re: 5 Years Old!
« Last post by Tracey on July 23, 2011, 07:43:13 AM »
Hey Matt

This site really is fab.  I have suffered with HHT all my life.  I have learnt so much from fellow suffers on here, and also been able to help out some.  This is such a worthwhile site.  I tell everyone about it, even if they don't have HHT, because they can learn so much from real life on here.

Tracey  ;)
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Discussion / Re: nose closure
« Last post by Tracey on July 23, 2011, 07:39:33 AM »
Hi colin

I can fully agree with everything that you have put in your post.  I had Youngs Procedure on one side some years ago.  It certainally helped up until now  :( 

Recently it has been bleeding from the closed side, two to three times a day, really bad.  Last night I was even woken by choking on the blood and speed that this was going down my throat.

The thing is, it is bleeding so much and without warning (as usual) but it it going down my throat, out my mouth and out of the open nostrel.  It is really scary because the blood clots in the wrong place and it continues to bleed down my throat.  So much that it makes me feel really sick, and I have been used to swallowing blood for years!

They have recently topped me up with transfusions, but still it bleeds.

Tracey   ;)
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Discussion / Re: Not coping and needing some one to talk to
« Last post by Tracey on July 23, 2011, 07:30:27 AM »
Hi Janine

I am really sorry to hear the news of your Grandma :-(

I am now 40 years old.  I have had active HHT since an early age (at primary school) and it has progressively got worse over the years.  Now I am unable to work and am on DLA.  I personally had no problems with my three pregnancies, I did however have two early miscarriages, but do not feel that they were HHT related.

In 2009 (at 38yrs old)  the powers that be decided to give me a hysterectomy.  By iron levels etc were sooooooo low that, considering they cannot stop my nose from bleeding, they decided if I was in agreement and already had three children, then to stop my monthlys would be beneficial.  That was good for a while.  Before the op, they went into a lot of research because they were worried about me bleeding out on the table.  So far on my own research, I have only found one major case of a female bleeding from below and complications in the womb and overies.

I had Youngs Procedure on my right nostrel some years ago, and having taken some time to get used to it, it had benefitted me loads, but now that side has started bleeding really badly.  I have recently had a blood transfusion and still it bleeds.

My experience of HHT is that it has got progressively worse over the years, and I am lead to believe that it is a progressive thing.  Different things seem to work for different people.  It is just a case of trying some of the treatments and talking with other people on this site.  I have learnt so much form the experience of others on here.

Communication between fellow sufferers and their families I feel is paramount for understanding of this condition.  Thank Goodness for the internet these days.  Fore years I thought my own family were completely weird until I learnt about others.

I am always happy to talk, you can private inbox me if you like, or my main e mail addy is tracey.samways@gmail.com and there is always facebook, you can catch me on there too.

Good luck and keep your chin up!

Tracey  :D
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Discussion / Re: tamoxifen
« Last post by brian gillard on July 04, 2011, 09:16:55 AM »
Hi Steave

Yes I was me in the next bed, so far so good with me as you say only time will tell good luck for the future.

King Regards Brian
,
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Discussion / Re: tamoxifen
« Last post by stevesmash on June 28, 2011, 03:33:01 PM »
Hi Brian, I think I may have been in the bed next to you. Both me and the Mrs chatted with your wife whilst you were down. I was only in for the 3 - 4 monthly lazer zap. I too opted for the hormone treatment. Its been a few weeks now, but after coming off the tranexamic acid I am feeling a lot healthier and the bleeds seem to be minimal. Still time will be the answer. Good luck Brian.
Cheers
Steve.
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Discussion / tamoxifen
« Last post by brian gillard on June 25, 2011, 08:21:58 AM »
Hi
I have just had my second skin graft and was asked by prof Lund at grays inn road if I would try tamoxifen I have started taking this treatment as any one else tried this.

Regards Brian Gillard
30
Discussion / Re: Not coping and needing some one to talk to
« Last post by janine on June 19, 2011, 02:30:58 PM »
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.
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