« previous next »
Pages: [1]   Go Down

Author Topic: hht and nosebleeds  (Read 3519 times)

Offline philbarto

  • Jr. Member
  • **
  • Posts: 80
  • Karma: +1/-0
    • View Profile
hht and nosebleeds
« on: May 27, 2006, 12:02:11 AM »
Hi Iam 58 and started with nosebleeds at age 20 getting progressively worse until I needed blood transfusions due to the amnemia. Fortunately I have a good GP and we stumbled on the process called Youngs procedure ,involving the closing of the nasal passages in both nostrils which I had done at the Sheffield Royal Hallamshire Hospital over a year ago. Since I have not had a single nosebleed.Due to an increase in my blood count I feel loads better as it was a struggle to do anything following a severe nosebleed.
Logged

Offline Matt

  • Administrator
  • Jr. Member
  • *
  • Posts: 95
  • Karma: +0/-0
    • View Profile
Re: hht and nosebleeds
« Reply #1 on: June 08, 2006, 05:54:41 PM »
Welcome to the site  ;D

That's good to hear that you feel loads better - I do understand how you feel as I have passed out in the past after having nosebleeds - and there's hardly a day that goes by without one. Mine aren't as bad as yours however that I need blood transfusions though...
Logged

Offline kath

  • Newbie
  • *
  • Posts: 1
  • Karma: +0/-0
    • View Profile
Re: hht and nosebleeds
« Reply #2 on: July 23, 2006, 01:07:29 AM »
Hi, I'm 36yrs old, live in Australia and have been getting progressively worse nose bleeds.  They usually occur from my left nostril.  I notice an increase in bleeds during menstruation, tired, stressed, after blowing my nose, hot showers, hot weather, a hit to the nose, being upset or drinking red wine!
I discovered a product called "Kaltostat" which is a product (gauze or cotton wool) used to treat haemorhaging (nasal or external skin wounds).  It apparently helps to clot the blot at the site of the bleeding.  I have found this very effective when using the cotton wool (one length approx 10 cm in a sealed packet). Insert a wad into the nostril and it should stem the bleeding.  Can be left safely for 2 days, but to be removed carefully and suggest some saline squirted into nasal canal to assist removal as the dry wool can re-start bleeding.  Ask pharmacy for help obtaining this.  Good luck!
Logged

Offline lenny

  • Newbie
  • *
  • Posts: 27
  • Karma: +0/-0
    • View Profile
Re: hht and nosebleeds
« Reply #3 on: August 29, 2006, 12:39:20 AM »
Hi Mat and everyone from a fellow sufferer congratulations on this new web sight. I must admityou have beat me too it mat ,as me and my sister have been thinking of doing the same thing for a while now but due to other factors have not been able to set one up.
   We have been in regular contact with several other sufferers by letter and phone so will now pass on details of your web site to them.
    I will only give a brief outline of us and the treatment we each receive on my first visit, we both have had hht from our childhoods,our mothers side of the family passed it on to us.The last few years have been the worst for both of us me with several blood transfusions and my sister with iron transfusions.
     we have only recently heard about the youngs procedure and would love to know more as it seems to be the holy grail for us,but would like to know more as to what restrictions the closing of the nasal passages has to the person ie: running or walking ect: if any. we would be very greatfull for any info,as our specialist is still treating us with a laser which we understand to only give tempory respite. will sign off now dont want to be to boring also guess what my nose started again.
                 LENNY >:(


Logged

Offline Matt

  • Administrator
  • Jr. Member
  • *
  • Posts: 95
  • Karma: +0/-0
    • View Profile
Re: hht and nosebleeds
« Reply #4 on: September 01, 2006, 02:24:18 AM »
Hi Lenny, and thank you for being a part of the site, and also for passing on details too, whilst this place is of course for people with HHT, as well as their friends, family, and anyone curious about it to communicate and learn more, I believe for the most up to date information about HHT, you are best to visit http://www.hht.org - they have a lot of information available - or for a quick link to an FAQ about HHT, the 'FAQ' link on the main page of this site links directly to theirs.
Logged

Offline Murphy

  • Newbie
  • *
  • Posts: 1
  • Karma: +0/-0
    • View Profile
Re: hht and nosebleeds
« Reply #5 on: November 10, 2006, 06:09:18 AM »
Hi my name is Linda and I'm 41 and I would love to chat to other HHT suffers, as I feel quite isolated at times, nobody  I come acorss knows anything about HHT - I myself know very little really in terms of things as you get older, as I inherited this from my biological father whom I have not knowledge. So I would dearly love to chat to anyone who is up for it. I attend the Hammersmith hospital and have had my lungs done twice, which has made a great difference. I just feel that regular medical people know very little, I seem to know more than my GP!! In the the 7 years I have had my two children and wasn't monitored at all! My health has taken a downwood slide in the last two years with blood counts of 6 and in and out of hospital more times than I care to remember, Ive gone from someone who got nosebleeds occasionally to a peson with a full blown health problem I wasn't prepared! But then who is. Anyway enough of my rantings - Anyone up for a chat I'd love to talk to you.     
Logged

Offline charlyn

  • Newbie
  • *
  • Posts: 11
  • Karma: +0/-0
    • View Profile
Re: hht and nosebleeds
« Reply #6 on: November 11, 2006, 02:42:31 AM »
For those struggling with low hemoglobin: I'm 53 and had my first bleed during my delivery into this world, so I've always struggled. I took iron by mouth for many years which wasn't as fruitful as I would have liked. The last two years I have received one gram of iron by infusion every two months and have maintained an 11-13 hemoglobin with no problem. My hematologist says that the more iron an erythrocyte has stored, the more efficient it is, and that efficiencly extends to fewer bleeds. I used to understand why, but, after my recent brain surgery, I'm not the sharpest knife in the drawer!
The iron infusions, which take only a few hours and are not too invasive or uncomfortable, have changed my life. Having enough blood affects everything it seems.
Logged

Offline wendy

  • Newbie
  • *
  • Posts: 8
  • Karma: +0/-0
    • View Profile
Re: hht and nosebleeds
« Reply #7 on: November 18, 2006, 12:31:56 AM »
Hello, well my situation is a little different to some, I do not have HHT but my ex-husband does and therefore we do not as yet know whether our three children do or not, my daughter has had nose bleeds since the age of 8 years which is a little worrying.
Because of their father's health problems, the family was referred at my request to a genetic consultant, we have since found out that two of the three children also have a blood clotting disorder which means they are at slightly raised risk of thrombosis than the next person.
Their father as well as having regular blood transfusions, also suffered a thrombosis in his bowel, due to the blood clotting disorder almost a year ago and now has to use artificial feeding due to this.  Out of interest, his father had HHT which was not diagnosed until the later years of his life. 


Logged

Offline philbarto

  • Jr. Member
  • **
  • Posts: 80
  • Karma: +1/-0
    • View Profile
Re: hht and nosebleeds
« Reply #8 on: December 25, 2006, 02:09:13 AM »
Have you heard of youngs procedure or nasal closure / I had severe nosebleeds leading to severe anaemia and blood transfusions so I had both nasal passages closed off as I bled from both sides . I have not had a single nosebleed since having this procedure done 18 months ago my blood count is now 1o -11 not 5 -6 . I had this done at the Royal Hallamshire Hospital in Sheffield Yorkshire  UK by a Dr Yardley . Maybe you could mention this procedure to your GP and ask for a referal to have the procedure done, be glad to help with any info you require
regards  Phil B
Logged

Offline Tracey

  • Newbie
  • *
  • Posts: 48
  • Karma: +0/-0
  • Hi!
    • View Profile
Re: hht and nosebleeds
« Reply #9 on: January 19, 2007, 11:49:03 PM »
I have had youngs procedure performed on just one side of my nose, but I guess from reading through the posts, that I must be quite lucky.  In as much as, I don't suffer from a low hemoglobin, or at least not for long.  Every so often I have to top up on iron, but have never yet needed a transfusion.  I dare say the day will come.

I have posted loads of replys on each board today, I hope you lot don't mind, but I really am interested is talking with other HHT sufferers.

Tracey
Logged
Tracey :-)

Offline lenny

  • Newbie
  • *
  • Posts: 27
  • Karma: +0/-0
    • View Profile
Re: hht and nosebleeds
« Reply #10 on: January 23, 2007, 03:29:56 AM »
Hi Tracy
  have been in contact with Phil about the youngs procedure, am very intrested in getting this done if I can can you give me any info as to where you had it done the benifits or draw backs, any info that I will be able to give to my consultant would be great. Phil has given me quite a bit of info as well but would like to take as much info as I can when I  next see my consultant in earliy march as he has never told me about this procedure dispite everything else being almost a complete failure. THANKS
                  LENNY :)
Logged
Pages: [1]   Go Up
« previous next »