Any suggestions for an (online) support group?

[Vinn27]

Hi, my partner recently had bypass surgery and we are looking for an online support group. Would you have any suggestions?

We are in based in London, so any groups here that meet in person would also work.

Thank you!

[Heather1957]

We are a pretty good on line support group although we all come from different parts of the UK so meeting up wouldn't be possible.

I know Facebook do have specific pages for people to discuss particular issues, try searching.

Is there anything in particular you wanted to talk about as there is a wealth of heart (and linked) knowledge on here.

I have to admit I found people on here very supportive after my bypass in 2017, in many ways they helped keep me sane!!

[Vinn27 in reply to Heather1957]

Hi Heather1957, thanks for your kind reply. I can see that there are so many questions and helpful responses on this page, so it's definitely a great support.

My partner is experiencing cardiac blues and thinks it might be helpful to talk to people who have gone through heart surgery (instead of friends & family who offer a listening ear but don't necessarily know how to deal with the pain, anxiety and recovery process). He would like to find out how they coped, dealt with the negative thoughts and the long recovery process.

If anyone would be willing to jump on a call to share their experience, we would very much appreciate that...

Thanks again for your help and the great support in this group!

[Heather1957 in reply to Vinn27]

I am sure others will reply to you but you and your partner may be surprised by how often this question is asked,Excuse the cliche but I am a strong, independent woman but after my bypass in 2017 I started feeling depressed, I never thought I would. I treated this site as a live diary and posted that I was feeling depressed, in fact I believe I even said I regretted having the operation, which of course was foolish as I would probably not be here now if I hadn't.

I was lucky in that I didn't need any medication to help me through, but as soon as I started to do normal things again ie driving, out to the shops, trips away (in the UK) I started to pick up.

for about a week I slept in a recliner as I found it more comfortable than lying in bed and took co codamol every 4 - 5 hours and made sure I took my last 2 just before bed time as they helped me sleep.

Again looking back I can remember typing I was taking 1 step forward and 2 steps back as on occasions that is what I felt.

I live alone and so my niece came up (when I was ready) and took me out for walks (I sound like a dog LOL) and I found myself feeling better after the walks as I was getting stronger, my op was the start of June so about this time of year, the weather was nice and we walked in park like areas so lifted my spirits,

Eventually the steps forward were more than the steps back and after 3 months I started working again (I was/am an assessor and only worked a week a month) and slowly but surely I started to feel better.

I always recommend keeping a diary so he can look back over time so he can see how he is improving (and he will do)

Anyway, hopefully others can post about their experiences, hopefully there will be some kind of Cardiac rehabilitation where he will interact with others who have gone through the same or similar experiences.

[Vinn27 in reply to Heather1957]

Thanks so much for sharing your story, I will make sure that he reads your & other people's experiences & interactions on this site! Glad to hear that you managed to overcome those negative thoughts & still helping others 5 years down the line...

[Cee-Cee1 in reply to Vinn27]

Heather's diary advice is a brilliant idea Vinn. I'm a 62yr-old female and live alone in Northern Ireland. I had a HA in January this year followed by a triple bypass at the end of February and was discharged from hospital 5 days after the op. My brother, who lives only about a mile away, popped in every morning for a couple of weeks to check on me and do a bit of shopping until I was able to walk round the corner to the local shops. When I took my first walk alone to the shop I felt like a proper superstar on my return - I've always been fiercely independent and it felt so good to have that bit of independence back. I was back in the driving seat 6 weeks post-op with a little cushion under the seat belt across my chest to protect me should anyone in front brake too quickly. When I was in the passenger seat of anyone's car for a few weeks after the op I felt every bump - not exactly painful, but it just made me very aware of the wound.

Once home from hospital I jotted down notes, times etc., of when I needed to take painkillers in case I inadvertently took too many (paracetamol only as I can't take anything with codeine or morphine derivatives). When I look back, I'm amazed (and sometimes almost startled - after all, it's a big op) at how quickly I stopped needing painkillers. It makes me feel much better if I happen to have an 'off' day (not very often now), to look at my notes and remind myself of how far I've come in such a short space of time.

I'll add that we're all very different in how we recover, some quickly and some not so fast, so all our experiences are different and we have different ailments too, but it's now 18 weeks and 1 day since my bypass op and I feel good. I'm loving the walks and the very slightly slower pace of life. Hoping to get back to work in a few weeks (phased return, 4 mornings a week).

This is a lovely site, everyone is welcoming and very helpful if you have any queries or just need some reassurance or advice - I'd definitely recommend it!

Good luck with the recovery. Carol

[Vinn27 in reply to Cee-Cee1]

Hi Cee-Cee, thanks so much for sharing! I am very happy to hear that your recovery process is going so well and that you are even able to drive! It is a great idea to jot down notes to remind yourself how far you have come. Good luck with returning to work .. keep us posted on how that goes!

[Cee-Cee1 in reply to Vinn27]

Thank you for your kind thoughts Vinn. Generally, well here in Northern Ireland anyway, 6 weeks after the operation a meeting would be arranged with your surgeon or consultant usually at the hospital where your operation took place for a post-op assessment. Prior to the meeting, on the same day, you would have an ECG and an X-ray at the hospital (to see how all the bits and pieces are performing) and the results would be immediately visible on your medical record. You then tootle off to the consultants office for your meeting where they check your results, wound healing etc and this also gives you the opportunity to discuss any worries or queries you might have (it's always good to write them down in case you forget!). They'll also tell you whether you can now drive or not.

I was incredibly lucky with the 'locum' cardiac team who looked after me, they were extremely attentive, friendly, funny and kind both pre-and post-op. One of the things, which sounds quite trivial, was the use of first-name terms with everyone on this team - surgeon 'Gwyn' and doctor 'Ricki' included. It somehow made things a lot less frightening - such a simple thing, but it meant a lot to me and it made me feel so safe, almost as if friends were looking after me. Some other patients I was in hospital with, who I've since kept in touch with, weren't so lucky. Everything with their teams was terribly formal which made them quite nervous and afraid to ask questions and their 6-week assessments were cancelled a few times. I suppose it just depends on how you feel about things like that. Ricki was delighted with my results at the 6-week assessment and Gwyn even dropped into the meeting to see me as he'd noticed my name on the meeting rota. They signed me off from the hospital that day highlighting that I only had to ring if I'd any problems and they'd be available. Thankfully I haven't had to call them!

[Vinn27 in reply to Cee-Cee1]

It sounds like you were surrounded by a wonderful team, that is great to hear and definitely makes the process slightly more bearable!

[Blearyeyed]

You could try looking up local Heart Foundation Support groups that have meetings , either online or face to face.Or ring your local Cardiology Department to see if they have local contacts for support.

Sometimes , local groups advertise on the notice board at the hospital or GP surgery.

As , well as finding out great tips for the patient they usually have carer members who can give you great advice and support for looking after your loved one.

They are often best placed to help advice you about what services and therapy is available for you in your area.

They can often recommend the best local doctors or specialists to see if you aren't happy with your current ones.

They often have social events or exercise groups you and your partner can try.

I hope that helps , take care Bee

[Vinn27 in reply to Blearyeyed]

Thank you Bee

[Blearyeyed in reply to Vinn27]

My pleasure , I did forget to mention that another good thing about making friends with people at a local group is that they are always on hand to help out in an Emergency with lifts or shopping etc.

[Harefieldfan]

Hi. This IS an online support group with lots of knowledge and help.

[Vinn27 in reply to Harefieldfan]

After seeing all the comments I realise now that there is so much support on here and that he will be able to post his questions and concerns. Thank you for taking the time to reply!

[Alison_L]

Hi Vinn. Up until 2 years ago, Croydon Hospital had a Cardiac Support Group that met at the hospital once a month. They're currently trying to get up and running again, but it's slow work as the old committee have mostly taken a step back. Even their facebook page seems to have been taken down now.

Your partner's heart failure nurse or cardiac rehab team will know if there's a local support group.

[Seaguller]

I know that there are Facebook pages, were you looking for a kind of live group that met via Zoom regularly?

[Seaguller]

facebook.com/groups/achdpat...

[Vinn27 in reply to Seaguller]

Thank you!