New start : Hi I have recently been... - British Heart Fou...

British Heart Foundation

40,327 members25,757 posts

New start

Wmh79 profile image
34 Replies

Hi I have recently been diagnosed with sarcoidosis, it seems to be very rare condition , puzzled a lot of people 😂but because of the scarring and inflammation around heart I was required to have icd fitted and put on medication. I feel fine about it all , it has been a lot too take In but know it’s for the best , so this is me now 👍❤️

34 Replies
Lezzers profile image
Lezzers

Hope you're doing OK. That's a lot of plaster over the wound site. My husbands dressing over his ICD site was just the size of the white padding that you have, his was fitted at Papworth. Glad to hear you're good with it all as it can be quite daunting. There's a closed facebook group called

ICD-crtdsupportuk that you might like to join for support & advice. You may even find others there with the same condition you have. Best wishes for your continued recovery.

Wmh79 profile image
Wmh79 in reply to Lezzers

That was right after the op , all that tape came off after ( making it look worse for sympathy 😂) I had mine done in Guildford they were brilliant, it’s weird cause it was only last week but getting on with it now , will probably have up and down moments but he ho . Thanks for Facebook group I will look into that ,I think things like that will be a great help to me cause it still feels strange this has happened, thanks

Dolphin14 profile image
Dolphin14 in reply to Wmh79

There is a sarcoidosis site on here.

Dolphin14 profile image
Dolphin14

My husband had cardiac sarcoidosis.

Having that ICD is very important. That scar tissue can cause a lot of problems.

Wmh79 profile image
Wmh79 in reply to Dolphin14

Is he ok , wat kind of treatment did have ?

Dolphin14 profile image
Dolphin14 in reply to Wmh79

You can pm me for details if you like.

Sarahd56 profile image
Sarahd56

Glad you're on the road to recovery..

Wmh79 profile image
Wmh79

Thanks 🙏❤️

SpiritoftheFloyd profile image
SpiritoftheFloyd

Glad the procedure went well. That is a LOT of dressing on the wound. I had my ICD fitted in Liverpool Heart and Chest Hospital nearly 7 weeks ago.

My wound was closed with Monocryl - dissolving stitches and Dermabond on top of that - a type of Superglue for skin, so no dressing at all - amazing what they can do these days. In and out of hospital the same day.

You'll probably find the wound site a bit sore for a while and I found it quite tight for 4 weeks, after that any remaining swelling disappears and I'm slowly starting to forget it is there most of the time.

MichaelJH profile image
MichaelJHHeart Star

Glad you are doing well after what was obviously quite a shock to you!

The large dressing reminds me of when I had a small cyst near my eye removed. It was done as a half-day case one afternoon but overran. The nurse that had to pud on the dressing obviously wanted to go home and slapped on a dressing covering half my face. I stopped for a coffee on the way to the exit and someone passing by said "What have you been up to" and I jokingly replied "You should have seen the other guy"!

Anyway, hope you feel 100% soon...

Milkfairy profile image
MilkfairyHeart Star

I wish you a speedy recovery!

Heythrop51 profile image
Heythrop51

Something I have never heard of before. Glad to hear it seems to be going well!

Lurcherlass1 profile image
Lurcherlass1

My dad had sarcoidosis that was linked to him catching TB way back in the 1950's when he was in his early twenties. It affected him quite differently in that he didn't have cardiac problems with it and had quite different issues. Anyway, my best wishes to you for a speedy recovery vand I hope all goes well!

Wmh79 profile image
Wmh79 in reply to Lurcherlass1

Thanks

HHH2017 profile image
HHH2017

Good luck in your recovery. You sound really positive which is brilliant. Be kind to yourself and don’t push it. Sounds like quite a few people can support you on here which is great 👌🏼

Wmh79 profile image
Wmh79 in reply to HHH2017

So far this has been a great help talking too people on here with similar or relative problems ❤️👍

Handel profile image
Handel

All the very best to you. xxx

Wmh79 profile image
Wmh79 in reply to Handel

Thanks xx

Bingo88 profile image
Bingo88

Good luck in your recoveryWmh79. I had my icd 6 weeks ago The same way as Spiritofthefloyd. A few things to remember that they never told me. To do the op they have to mess with nerves that go down the arm. To get the device in. Also if checking b.p. use the arm away from the op. Cause 3 weeks post op. I had a tender elbow. And swollen arm and fingers. Which turned out to be a blood clot in my Shoulder. So on blood thinners now for 3 months. Plus i did have 2 blood thinning jabs before the op. Take care hope all goes well. Brian

Wmh79 profile image
Wmh79 in reply to Bingo88

Thanks Brian did u have palpitations after or did u have some funny feelings after , like your heart adapting to the device maybe?

Bingo88 profile image
Bingo88 in reply to Wmh79

Nothing at all Wmh79. As soon as i was back on the ward. I was walking around again. Had to have mine. Just because following a sore throat and cough. My heartbeat dropped to 40bpm. Then overnight in hospital. Dropped to 21. While i was asleep. Hope you go on ok pal. Brian

Wmh79 profile image
Wmh79 in reply to Bingo88

Cheers mate

Good to see you're on the mend, Sarcoidosis can be a pain to live with,I first got diagnosed with it in 1999 but it never affected my heart at the time.

Seems more doctors are aware of it these days and treatment has really moved on...

Wmh79 profile image
Wmh79 in reply to

Yeah hopefully I have been put on steroids at min then gonna be treated in London hospital so might be a case of seeing wat works with me

in reply to Wmh79

Steroids work well,if you start to get any problems or issues with your eyes get yourself to the doctors ASAP.

Hope everything works out for you...

Wmh79 profile image
Wmh79 in reply to

Ok cheers thanks for that , think there is a lot of side affects I gotta look out for , hopefully will get sorted and be on something else or maybe nothing. Did U get all sorted or u still on medication

in reply to Wmh79

It comes and goes,no meds for it at the moment,first two years I was on high steroids and a mix of other drugs by then it was under control.

Almost 20 years on my heart attacks are under investigation to see if it's Sarcoid related...

Wmh79 profile image
Wmh79 in reply to

So it is something that can be controlled but needs monitoring

in reply to Wmh79

In most people these days yes,they'll be watching your ACE levels in regular blood tests but you'll know when it needs extra meds,a good GP helps.

Wmh79 profile image
Wmh79 in reply to

Oh thanks, still unsure about it all and wat they gonna be doin etc

Odom63 profile image
Odom63

You look a really good on your pic after the surgery you'd just had. My brother also has sarcoidosis he had no knowledge of it prior to his heart events his is in his lungs. He has an lvad & recently joined the queue for a heart transplant 14months on from his lvad

My very best wishes for your continued recovery take care

Wmh79 profile image
Wmh79 in reply to Odom63

Oh bless him , how long do they think he has had it for

Odom63 profile image
Odom63 in reply to Wmh79

They're unable to say he was diagnosed May 2018 apparently it can start after a chest infection that's what he was told.

I was unaware you can have it in your heart too think I need to do some reading on here as someone else mentioned there's information to be had thanks to bhf

Wmh79 profile image
Wmh79 in reply to Odom63

I still waiting to be seen so hopefully can be treated, they fitted icd and put me on steroids and waiting to be seen in London hospital

You may also like...