Facebook Groups for OHS

[KayBee718]

I came across two Facebook groups for OHS/valve surgery warriors:

The Zipper Club
Heart Valve Surgery Support Group

I also heard about a support group called Mended Hearts that has chapters all over the US.

My big appointment to meet the surgeon is two days away!

 

[dornole]

Good luck with your appt. It's just really unpredictable what they'll say every time. Earlier this year I was all "This is it!!" when they switched me to 6 month vs yearly monitoring, and I found this forum and read a million things, prepared myself emotionally, over-disclosed to a client that I might need HEART SURGERY, etc. Then after a couple of those, "Meh, come back in a year, you bore me . . .medically speaking" : )

For them, it's not a big appointment. They just slot you into their flow chart /decision tree and decide what to do with you.

I hope they explain their basis for deciding well so you feel confident about the next step, whether it's srugery time, more tests, or more waiting.

Keep us posted . . .

 

[Superbob]

Yep, Mended Hearts is a large, nationwide organization -- heart-surgery survivors helping others who have just had the surgery or soon will have. You can check it out at mended hearts.org. You can probably find links to chapters near you at the national website.

 

[John_MiG-19]

This forum was a Godsend to me. I went into my surgery with a totally different mindset than I would have had I not crossed paths with these awesome folks (aka kooks

)

 

[MrsBray]

I was visited in my hospital room by a Mended Hearts volunteer. i thought that was weird. I slayed my fiercest dragons on these boards, and never disclosed the scariest information to my family. I used another popular journal site to keep in touch with friends, family, and coworkers. It was here, on these forums, that I found the information I was seeking, and the courage to get through the worst.

 

[Paleowoman]

I too found this forum the best for me. I was not going to discuss the scariest stuff with my husband either, much preferred to discuss things here - still do - why worry him unneccesarily. Here we can discuss things very openly. I'm on several health forums for my other conditions and I much prefer the forum type format to FB or other social media. I'm glad we don't have anything like 'Mended Hearts' in the UK - gosh, my heart wasn't broken before surgery, it was just 'different' (bicuspid) and that difference had to be changed as it wasn't good enough to keep me going !

 

[epstns]

While I was in the hospital after my valve surgery, I was also visited by a rep from Mended Hearts. He was rather flabbergasted at how much more I knew about the whole process than even he was taught by M-H. He kept trying to recruit me, but I told him that I was already a participant in a different sort of support group - and that I was fully planning to get back to my 50-60 hour/week job within a matter of weeks.

I do think that once I retire, I may look into volunteering at one of the local hospitals' Mended Hearts chapter.

P.S. I don't "do" FB or any of the social networking sites, other than LinkedIn, which I use for professional networking.

 

[Boomanchu]

I got the visit from a MH person and at the time scoffed at it. I was feeling pretty good and didn't see what talking to others that had valve surgery would do for me. I really didn't sleep till day 5 and was exhausted and woke up about 2am and it was unusually quiet for a hospital. I had no idea where I was and felt nervous. I knew who I was and figured pretty quick that I was in a hospital but didn't know why. I started to put things together and remembered my brother bringing me to the hospital because there was "something wrong with me" I felt the discomfort in my chest and put my hand on it and felt the incision and thought.......DAMN! I guess there was something wrong. I suddenly felt more sad than I ever had, lonely feeling and a little scared. I looked on the table and saw my phone........I thought I could call someone and ask what happened to me. It took about 20 minutes to remember everything. I shouldn't have let myself get so exhausted, it was pretty awful and I never really told anyone but my girlfriend and didn't get too into details about it........didn't want anyone feeling sorry for me or worrying about me. I eventually decided to look for something like this site to hear others stories.