Does anyone have HHT? Hereditary Hemorrhagic Telangiectasia

Posted by amartin945 @amartin945, Feb 9, 2024

I know HHT is rare and currently there is no cure. Does anyone else suffer from HHT (Hereditary Hemorrhagic Telangiectasia)? If so, what medical treatment are you having?

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pendutchgal | @pendutchgal | Mar 12 3:31pm

In reply to @colleenyoung "Hi @pendutchgal, welcome. I'm bringing in fellow HHT-ers like @heathshan @olivine @amartin945 to share their experiences..." + (show)

I use Afrin nasal spray or its equivalent to stop nosebleeds. A saturated
cotton ball inserted in nostril or nostrils.

anamizzi123 | @anamizzi123 | May 15 1:33am

My husband suffers from HHT.He used to get very bad nosebleeds now the nosebleeds have stopped but unfortunately it is in the Liver quite bad. His problem is he needs a Hernia operation and don't know if he should have it because of more complications. Has anyone ever came across a situation like this?

Lori, Volunteer Mentor | @loribmt | May 15 7:29am

In reply to @anamizzi123 "My husband suffers from HHT.He used to get very bad nosebleeds now the nosebleeds have stopped..." + (show)

Hi @anamizzi123. While you’re waiting for members, who also have HHT to reply about any surgical procedures they had and how that was handled, it might be a good idea to have a consultation with a surgeon. They may have dealt with this situation before and have protocol to follow.

There is a website I found which might be helpful if you need a second opinion. Cure HHT offers a list for Centers of Excellence, in several states, which specialize in Hereditary Hemorrhagic Telangiectasia. These facilities have a deeper bench of experienced specialists.
Cure HHT
https://directory.curehht.org/hht-centers
I can understand your concern, considering the potential for any complications. So it would be good to make sure all the doctors are on the same page in the decision making process. Have you and your husband spoken with his hematologist or a surgeon about the hernia surgery?

anamizzi123 | @anamizzi123 | May 15 10:37am

In reply to @loribmt "Hi @anamizzi123. While you’re waiting for members, who also have HHT to reply about any surgical..." + (show)

Thank you. We live in Europe so we have quite a few options in Lyon France
and Germany. I was hoping to find someone with the same problem to exchange
views.

pianolamp25 | @pianolamp25 | Jun 3 11:48pm

In reply to @anamizzi123 "My husband suffers from HHT.He used to get very bad nosebleeds now the nosebleeds have stopped..." + (show)

My father has hht type 2. I don't know whether he has any liver involvement, but he did have hernia surgery without any complications a few years ago. The CureHHT team is excellent and should be able to provide you and the surgical team with more relevant info.

Lori, Volunteer Mentor | @loribmt | Jun 4 9:55am

In reply to @pianolamp25 "My father has hht type 2. I don't know whether he has any liver involvement, but..." + (show)

Hi @pianolamp23. Welcome to Connect. Thank you for sharing your dad’s experience with having HHT and that he was able to have surgery without complications. Did his surgical team have to follow any special protocol for him?

anamizzi123 | @anamizzi123 | Jun 4 11:12am

My husband has it in the liver and now has asetis very little and is being treated with diuretics to control it.

pianolamp25 | @pianolamp25 | Jun 4 10:58pm

In reply to @loribmt "Hi @pianolamp23. Welcome to Connect. Thank you for sharing your dad’s experience with having HHT and..." + (show)

No special protocols, as he was not diagnosed at the time.

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