Hello…I’m 66 years old and have been living with HHT for several years. The mutated gene that I have is ENG.
I’ve had an AVM in my right lung which was embolized in Toronto at St Michael’s hospital.
I have one son that has HHT as well.
My case is a little different than the others that I have read on this blog.
My father was deceased when I was diagnosed in my early 50s. My mother was never tested before she died, but she never had any nosebleeds at all.
I have six siblings and not one of them have nosebleeds. One sister has been tested and is negative. The experts feel I am a unique case because I don’t have any family members with HHT.
I also attend a HHT clinic in Toronto, Ontario for checkups and as well I see an ENT doctor in London, Ontario.
My ENT doctor in London has been wonderful in helping me deal with these spontaneous nosebleeds.
I’ve had a few surgeries with him where he cauterizes my nose and has injected Avastin under the lining of the nose. It has been a very effective procedure for me, but now that I am older it’s not as effective.
I have recently had the “young” procedure done to my right nostril, which has been very helpful. My left nostril is still open and does still bleed.
(I also take transexamic acid 1000mg 3X daily to help with the nosebleeds.)
I decided to do the “young”procedure to my right nostril because I felt my quality of life had deteriorated greatly. I wasn’t leaving the house for fear of a nosebleed.
It was difficult to plan anything because I would meet friends/family for coffee/dinner and I would have a nosebleed and have to leave abruptly.
My husband wants to do things like travel and I’m afraid to do so. (Mostly, fearing being on a plane and having a nosebleed.)
Things like enjoying a cup of coffee in the morning or brushing my teeth could trigger my nosebleeds.
Also, going to a dentist is challenging because of the nosebleeds and as well I have Telangectasia on my lips that bleed easily.
Last year I was diagnosed with breast cancer and had surgery; went through chemo and radiation. My nosebleeds were horrible during chemo.
(BTW, I have to be an advocate for myself and educate others because many people (and health professionals) are unfamiliar with this disorder.)
I am hoping and praying 🙏 that now that I’ve had the “young”procedure I can get back to doing the things I enjoy.
(Nothing is perfect and never will be but I am taking it one day at a time.)
My son’s nosebleeds are manageable at this time.
I pray that the experts will have more effective treatments available to him in the years to come.
I don’t have anyone to talk to about HHT (other than my son) so thank you for allowing me to share my story through this blog.