open letter

[Bob]

Hi all, seeing as there seems to be very little going on in the hht forum world of chat  I thought that I would put in a word or twenty about my state of play.
Have come to the conclusion that it is best by far for me if I can stay away from the medical profession for as long as possible, I have seen many consultants since my first visit  approx,  1984/85, it is now quite some time since my last visit to my consultant whom I am sure knew that even a partial fix for my condition was never  even a possibility.
I will not bore you with detail as I am sure I have already expressed myself in previous mails on this site, but on the good side as I am now into my 66th year, and allthough bleeding for England almost being a daily event, my general health is not bad, on my good days I can feel quite good within myself.
The telangiactasia is still increasing on my face but do not bleed as they did in previous years, unless I am a bit rough with the towel. I have many telan on my face now but my courting days are over so who cares, certainly not me I am just happy to be here enjoying a simple quiet life.
So when we feel down just remember as I do, there are many out there a heck of a lot worse off than some of us.
Be Lucky, take care.
BOB..................
  PS, A few replys would be nice,as too how you deal with your HHT in everyday life...................................

[Matt]

Nice to hear the good side - very true as well that though it isn't ideal, there's definitely worse things that others may be going through.

As for me, I just put up with it as best I can, after all it's just become routine. I don't have any telangiectasias on my face or skin like yourself or some others, but obviously as mentioned before I do get the nosebleeds - which I've just been given some cream to put inside both nostrils twice daily to see if it makes any difference - if I remember correctly, I was told it should soothe the areas that usually trigger it.

I'll report back whether it seems to make any difference after I've used it for a while.

[Tracey]

Hi Bob and Matt 
I haven't been on here for quite a while now, but am currently in the ENT Ward at Torbay Hospital.  I have been here since Wednesday.  Like you, HHT becomes an everyday occurance that you tend to deal with.  It becomes part of the routine, I find the most frustraiting times, other than when I bleed at inconvienent times, is when I spend so much time explaining myself over and over again to medical staff who just can't be bothered to do some research on their paitent.

Tracey

[Matt]

True, it can be annoying, especially as it's likely to be all documented in the notes - I can only assume it's because some that talk to you about it don't have any experience with dealing with it before as it's supposed to be rare. I wish you luck in getting things sorted and are out of there as soon as possible.

Unfortunately I am unable to report back on the cream as of yet... as I have misplaced it and so need to find it again