Living with HHT | Elaine Cook’s Story

Elaine-Cook-HHT-Story

Everyone has a different story with HHT but this is my story….(this is for awareness not sympathy)

From 8 years old I suffered horrendous nosebleeds, I remember standing over the sink in the school office numerous times with it pouring. I was always blue…..legs, lips, hands. Doctors at the time said I had bad circulation and as for the bleeds my nose was bleeding because ‘it was a release valve”. I have had my nose cauterised numerous times but I now know this causes more harm than good for this condition. 

Although I suffered daily let’s roll onto 2005 (when I was 33 yrs. old) and i suffered a mini stroke, this baffled the doctors. On going to the dentist he noticed blood spots on my tongue and lips and between the dentist and my doctor I was tested and then diagnosed with HHT.

After lots of scans, etc it was discovered I had 2 large PAVMs in my lungs, the main reason for my ‘bad circulation’ and my breathlessness. Explains why I couldn’t do PE at school.

These were fixed with a procedure called embolisation. Although it was too bad to do in one operation, so I had to go back. In between the operations I suffered at least 8 or 9 * mini strokes (*they said it could also be severe migraine) Secondary Polycythemia, panic attacks and I even collapsed at work (i was so embarrassed) 

To this day when I suffer bad dizzy turns, I still panic about having a mini stroke (PTSD) I still have nosebleeds, my lip and tongue bleed like a artery spouting. I still suffer fatigue, dizziness, breathlessness, palpitations, migraines. etc but I still don’t let it win, well most of the time but tbh it’s been really testing me this last few months!!!! I think I hide it well, although the thing about invisible illness is you can look so well. (especially with a Scottish tan)

2019 I was told I still have a PAVM (which they have tried to fix twice, unsuccessfully due to where it is in the lung) so I was told instead of a yearly check-up, they know more now so I just need a check-up every 5 years. 

 I was not happy with this as still had symptoms but like most HHT patients we aren’t listened to and that is a major problem. (it’s getting better) 

2020 I went in for a routine gallbladder operation and didn’t recover as well as expected. Doctors noticed the low oxygen, breathlessness, bleeds, migraines etc and kept me in for nearly 3 weeks even though I told them this is my usually day to day symptoms.

In hindsight I am glad they seen this as The NHS have been amazing, numerous scans, endoscopy’s etc and discovered I had PAVMs that still needed treated, so they were embolised in March and August 2021 both 3 hours long, fascinating though as I watched on a 50″ screen. It’s amazing what can be done. I will add photos. 

2023 it was confirmed that I have Brain AVMs and have suffered a couple of silent strokes in the past. I had a MRI in April 23 as I had to go to hospital with a suspected stroke at work, I also had been suffering aura migraines, ( the symptoms are very similar to strokes) brain fog, dizziness, etc This will be continued to be monitored yearly. Thank fully it was not a stroke this time.

Sept 23 abnormal liver tests and was in hospital for 6 days 

2024 – I’m currently going through tests to check for Liver AVMs**

I get regular iron infusions due to blood loss in my GI tract and bowel as well as nose, lips and tongue

As I said this is my symptoms, everyone is different, this is NOT for sympathy but for awareness. I wish I read more about HHT when I was younger and got checked. I am in some fantastic groups on Facebook and learning more about my condition every day, they are amazing

Most doctors don’t know about HHT and it’s exhausting explaining it all the time especially when I am told different things by different doctors in hospital, but I’m glad to say this is improving.

If any of this relates to you or someone you know please get checked out. 

 

A big thanks to the NHS for all the care you give me. Outstanding. 

I also want to thank my friends and family that have been there for me and my new boss and workmates that have been so supportive.

**I also want to add special thanks to #HHTIreland, Dara Woods and Sharon Gregg  for supporting me since Sept 23 when I was in hospital, very ill with abnormal liver function tests. I’m so glad I found you Your support, information and help has been amazing and really helped when talking to consultants. I’m so glad I got to meet both of you and others at the HHT Ireland Patient Forum in Portlaoise. 

And finally, thanks of course to my mum who comes with me to most of my appointments and most recently on our trip to Dublin

Thanks mum for all your support xxx 

Thank you Elaine E Cook for being so generous & brave to tell your #HHT story with us, as we all work hard to raise awareness of HHT.

#HHTWarrior #HHTFamily #AlwaysRaisingAwareness

By working together we can find effective solutions to improve HHT patients in their daily lives.
Your life story is valuable in making a difference, the more we talk about it, the more we can change things.

 

TOGETHER WE HAVE THE POWER TO CHANGE THINGS

You can send us your story to info@hhtireland.org

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HHT FACTS:

1 in 5000 people worldwide have this condition

90% of people are not aware they have HHT

Hereditary haemorrhagic telangiectasia (HHT) is an inherited* genetic disorder that affects the blood vessels. It’s also known as Osler-Weber-Rendu syndrome. * Although it doesn’t always need to be inherited as thankfully I don’t have any other family members with it, this is known as De Novo.

Please ask for a genetic test if you think you have any of these symptoms. It’s better to get caught early as you will read below some of the complications, it’s not just a nosebleed although we all suffer differently.