My post-implantation journey had been going reasonably well until I noticed a tiny hard lump protruding just where the leads enter my subclavian vein. It was very small to begin with and appeared within a couple of weeks of surgery. I thought it was subcutaneous sutures and so left it be. I called it Bob.
Bob was very noticeable in the mirror and started to become a distraction when pruning my nasal hair. It's also become very sore from clothes rubbing on it. I tried not wearing clothes for a day and Bob definitely wasn't as sore, but this is not compatible with being on beta-blockers; I feel the cold, you see. And I almost got arrested when putting the wheelie bin out.
I've tried not to prod Bob, but when you notice these things, you can't help but have a gentle exploratory poke, can you? No, wait, there's also second, less obvious lump. Yes, another gentle prod or two confirmed this.
Last week, a third lump started to become more pronounced. After some more gentle exploratory prodding, I called the arrhythmia team at the hospital and sent them some photos of my lumpy region.
The team called me in for an inspection yesterday. They too had a wiggle of my skin and a gentle prod of the lumps - you see how compelling and addictive this is?
They have confirmed that the lead entry point is too shallow. Bob and friends are in danger of puncturing/breaking down my skin. The surgeon will need to reseat it within the next fortnight. 🫤
I have a couple of questions, the first being more serious:
1) Has anyone on here had a lead entry point reseated?
2) I am very slim. Should I fatten-up to give the thing more cushioning? 🤭
Best wishes from Bob's host. x
Written by
EmmJayTea
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Wow so sorry to hear how this happened to you but I love how you worded it I can honestly picture everything 🙈😅🤣. Love how positive you are about this and I wish you all the best for your next procedure x
Thanks Yumz199725 ! Positivity and a dreadful sense of humour have been my coping strategies through all this. It hasn't been easy and I've had really low days.
I'll be honest; I'm really lucky that the procedures don't bother me too much. I don't take this for granted, not least as I met some very frightened patients on my ward when I was in hospital. It's natural to be scared. I certainly get a bit anxious in those final 10 minutes before I go into theatre, but other than that, I've been told I'm quite pragmatic. I'm not sure if it's because I have a sciencey brain or something else? Eitherway, I am totally absorbed by the science of the human body.
The lifestyle changes are my biggest battle since diagnosis (congenital disease) and I've had some really tough days. However, the recurring thought that I am alive is a bloomin' powerful one and it always makes me smile.
To be honest, I'm not quite sure what level of lumpiness is normal. But as soon as the nurse saw mine, she referred me to a doctor. Mine really are very pronounced and the skin is very thin and translucent over each lump. The skin is a greyish-white colour - blood is not refilling the capillaries over the top of each lump/bump. They are approx 2mm in diameter. If left to perforate the skin, then there is a risk of infection. Infection = taking the entire ICD and leads assembly out and starting again on the right side of my chest. I really want to avoid that!
I was beginning to speculate that all manner of things were wrong, which prompted me to contact my clinic. If you are unsure about yours, then it might be worth telephoning your clinic and seeing if they'll take a look, even at photos of yours in the first instance?
If it's not quite right, then they can fix it - that's a good thing. 🙂 If they say it is normal, then you'll have peace of mind. 🙂
Just to send good luck, MJT. Bob sounds like one of those friends you haven't seen for a while and you're curious to know what they've been up too when they visit. You then remember the reason you haven't seen them for a while and can't wait until they go home again! Hope you're successfully sorted out again soon and get to say 'bye-bye Bob, it's been nice (or not!) knowing you'. And - as my dear old Mum would have said - 'keep your hands off him in the meantime'! - Carol 👍🙂
Hi EmmJayTea!I'm sorry for your predicament, your 'Bob' surely is troublesome and uninvited companion for you, and I sincerely hope he will get sorted out!! Especially if he causes any pain!
And I really laughed 🤣🤪 (I'm very sorry!!🤦♀️)
whilst reading your post..
You're an amazingly witty writer!👌👏
I had OHS 3 years ago, new aortic valve put in.
All went well, alas! I was gifted by nature or my body, not sure which, a keloid scar!😡
That has been ugly and uncomfortable , still itches now but slowly starting to behave itself.
Last year in August I started noticing a lump or rather a cyst on my scar right in the middle of my boobs. It was growing and was extremely painful, I couldn't bend over to tie my shoelaces..at night it got squeezed and pain woken me ...
I called it my Alien.👽
Expected any minute it will burst through my chest and with a shriek dissapers under a sofa.
In the end I went to A&E.
I hope for you that Bob will get looked at by someone and please don't be putting your wheelie bins out naked!🤣🤦♀️😜
Arrived at 7pm to A&E...waited till almost midnight on a very hard seat in a very busy waiting area...you can imagine Saturday night in Liverpool during a heatwave !🥵🥵🤯🥳😳...absolutely crazy! Some of the characters! Unbelievable! Drunk, disorderly, noisy, swearing, police officers in and out of there! Better than any party I've been to!🤣 And certainly better than any TV programmes on Saturday night!👏
I was told if the A&E surgeon is still there he'll lance it for me...
He's gone..so onto a surgical ward I went. Was connected to a drip with antibiotics.
In the morning a doctor examined me, said they'll phone Heart and Chest Hospital where I had AVR because of the keloid. And I'll get transfered there . I wished I did stay at home and just stabbed it with my knitting needle( sterilised of course!🤞)
Hours passed...after lunch I was told by different doctor they didn't have response from heart hosie yet..and I have a choice of either go under full anaesthetic as it WILL BE painful or have a local one.. 🤣 hmmm
But if I go under I need to stay another night. 😯
No chance! 🤔🤯The temperature on the ward was about 80°C 🥵🥵and food disgusting,🤮 so I requested to be discharged and given supply of oral antibiotics to take with me so I can carry on with treatment at home in comfort.
During the night the Alien got squashed I guess? ...and the antibiotics must have kicked in👏...in the morning I felt relief from pain, my chest and t- shirt covered in yellow slime and in a place of the Alien there gaped a fairly large crater.
I placed a dressing over it, finished the antibiotics
and that is the end to my lovely story.😆
Hope you enjoyed it.
I had no problems with the scar since then🤞, but it is still tender and itchy when I sweat at night. But, hey ho, better this than being dead. AVR has prolonged my life for sure.❤️
You need to be clothed even if it's recycling stuff day!🤣
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