Why at least aren't people who have suffered heart issues in any regard, sent to this forum

[Ourdill]

This forum has offered me more help and advice from actual survivors from many heart issues... Mine was an LAD stent last June when I was 43.. The youngest in Walsgrave coronary care unit by far at the time. I missed all cardiac rehab due too covid closures, been blue lighted back in 6 times since because my head plays with my body that won't let go of reliving that "shit day".. Im back on course due to the re-re-re-referralls from the A&E docs plus my gp, but it's a phone call per week I'm getting there but my point is. This forum has helped me so much more in the last 2 days from when I dint know what to expect whilst crying posting, to actually relating and really feeling better just reading how well some of you are doing after what seems the exact same thing? Why didi it take me from July to find this. Huge love to you all. I'm not deleting this intyweb page for sure.. We've all got this right? ❤️

[Nettekin]

Hi ourdill. So glad this site has been helpful to you. Many of us felt a bit abandoned after our heart event, even before the pandemic. I had my ha and 2 stents in in July 2019, so I had most of my rehab - I could have continued much longer if the gyms hadn't closed.

As others can attest, the medical side of our issues are handled very well but the mental side of it not so much. I remember when I came out of hospital I wanted to see my GP for a de-brief, he really could not understand why.and I more or less had to beg him. My own experience came completely out of the blue, no symptoms prior to the day of blue lights. It was so frightening, I needed reassurance, explanations etc but they were lacking. My response was (and still is to some extent) to go into complete denial.

I have found this site to be informative and respectful and have enjoyed following people's experiences and learning about other heart issues as well as things that relate to my situation.

Wishing you all the best for your continued recovery. X

[Hidden]

Hi Ourdill. I, like you, only recently joined this forum and wish I’d done it years ago. I’ve had 4 open heart surgeries and am just awaiting my 5th which I’m hoping to have next month. It’s hard to talk to people as most just don’t understand how you feel, not even family and friends. The medical staff talk to you about the physical side of what’s happening to you and your recovery but not the mental side and how it messes with your head which is probably because they can’t possibly know. I had my first surgery at 37 and I’m in my early 50s now. People used to assume I must have abused my body to be having these issues so young when in fact they’re congenital. Everyone on here does understand and as you said, I’m really not sure why this is not the first thing that the medical staff recommend. It’s done me the world of good. Keep chatting to people on here, particularly if you’re having a bad day. We all have them but at last, you’re somewhere now where we’re all in this together. Welcome to the dodgy heart club! There’s more of us than perhaps we all knew. Keep smiling

[Edsonmontibeller in reply to Hidden]

Hey, what kinda surgery did you undergo? Why why did you have to have 4 surgery ? Others were not successful ?

[Hidden in reply to Edsonmontibeller]

Hi Edsonmontibeller, I had my aortic valve replaced in 2006. In 2011 they to,d me the valve was the wrong size and therefore, not working well so I had an aortic root and a valve redo. 4 months later, I got endocarditis and was rushed in for emergency surgery and had it all done again. Then, in 2014, my mitral valve started leaking and I had that replaced. It is my mitral valve which is failing again. The lack of emotional support is staggering and apparently, being on a bypass machine does cause something call ‘pump head’ which can cause depression. I still have very down days now but this site is really helping. We just all need to stick together and pick each other up when we need to. Thanks for your reply

[Kristin1812 Heart Star]

Hi Ourdill (and the other members following). Really heart-warming to get your posts. I had my heart issues over 10 years ago now, and got immense help from this site. I still do, Long may it continue.

[richard_jw]

My situation exactly. I think that the problem is that rehab stopped because of covid. I have been back to A&E at least 7 times and I'm sure had rehab been available that would not have happened

[Kristin1812 Heart Star in reply to richard_jw]

Yes. Such a shame they’ve just not been there...I’m sure you're right, they hoovered up all sorts of concerns of mine, at an an early stages before they became a big problem. Hopefully they will be back on offer soon.

[Ourdill in reply to richard_jw]

Exactly the same as me pal

[seasider18 in reply to richard_jw]

The initial rehab classes are very easy. Surely they can give out exercise books that you can follow at home.My rehab was much delayed due to a tendon problem and by the time I went to the first classes I was way ahead of those just starting as I had been walking a lot and exercising for about four months.

[Qualipop]

I didn't get any advice at all from eth cardio team after my HA; just sent home with a bag of tablets and told not to drive for a few weeks> Rehab got in touch but refused to let me go for rehab because I'm in a wheelchair, the nurse was utterly useless and acted like it was my fault. I got no explanation how bad it had been or any help at all and despite problems with almost all tablets, my GP refused to change any saying the cardiologist had to do that. It was while looking for tablet problems that I came across this forum and boy am I glad I did.

[Jessiebrown]

Hi I had open heart surgery just over 2 years ago and no one prepared me as to what happens and how long it really takes to get over such a traumatic event, even going to rehab no one helped me to learn to breath properly ,I never realised your lungs are deflated and it takes time to get them going again properly ,I wish I had been able to talk to some one before and after who had been through the same thing,I am not a whimp and have had lots of surgery not for heart and just get on with things but I have found ohs really needs to prepare people for what’s in store, not every body is the same, some people get over surgery quicker than others, I wish I had been advised to this web site before I had my surgery,it is a really fantastic site and I have learned so much and am eventually starting to improve even though things are still not right and would like a face to face appointment instead of phone calls with my cardiologist.Best wishes to all and try to keep well

Xxxx