Anyone with recurrent Infective Endocarditis

[Cherries6]

I was wondering if anyone has experience either themselves, or as a carer, of this disease. My husband has had four recurrences since his first episode in mid 2010 and three major heart surgeries with valve and ascending aortic replacement each time. His life has been in the balance on many occasions. The current episode is on his pacemaker leads. He's had the pacemaker extracted and is now in hospital on IV antibiotics. The various consultants tell us that they aren't really aware of anyone who has survived multiple recurrences of this ghastly disease but I would love to make contact with someone who has survived and to know how they have coped and dealt with it. There dont appear to be any support groups so again if anyone knows of one that would be good news too. All the best.

[dannybot]

Hello ,

I found this support group which may help. Very sorry to hear about your husband and best of luck in teh future.

drugs.com/answers/support-g...

Regards,

daniel

[Cherries6 in reply to dannybot]

Thank you for hunting that down! I think endocarditis is a very little known and poorly u derstood disease. I had never heard of it until my husband became ill and the only person who has ever known what I am talking about was a doctor. It's a dreadful, persistent disease with many complications which can include stroke, brain damage, and loss of limbs due to gangrene as a result of embolisms. The treatment is very difficult and long, and usually includes valve replacement surgery if damage has resulted. If anyone reading this is suffering from recurrent episodes or is a carer, do reply here. I have learnt so much over the last four years.

[Janine10 in reply to Cherries6]

Hi,

My name is Janine and my husband has also had 4 occurrences of endocarditis. 1 resulted in him needing a valve replacement and a valve repair. I know this post is 2 yrs old but I would love to connect with someone who understands what we have been going through. Luckily, he has been fine since his last occurrence in May and looks like he is out of the woods. Please let me know if you would like to connect. I have been searching for any organization or charity that could help and there is nothing. Thank you.

[Love2bake in reply to Janine10]

Hi there, I'm not good with groups- stumbled across this/ sure I'll forget the password i made. 45 yr old mom of 3- husband has had endo 2x in 9 months, one OHS with AVR replacement- currently on 6 weeks of IV meds for round 2- I would love to connect- email is [e-mail]