- The saga continues…
Some of you may remember me posting this time last year about my cardiac issues. I had a bicuspid and failing aortic valve, a weak aortic root and a hole in my heart aka VSD. In March I had the surgery to replace the valve, aortic root and fix the VSD.
During my surgery my heart was damaged and I was fitted with a pacemaker to control one side of my heart – this before I was discharged. The surgery was meant to give me the ability to regain my fitness and a more normal life expectancy.
Since then, I’ve been working hard to recover but my recovery has been slower than I expected and as it turns out the surgeon and cardiac team expected. In fact I had been telling them something wasn’t right since the surgery… Investigating this, I’ve had further tests and these have shown that I now need a pacemaker for both sides of my heart and I am now actually in heart failure. It turns out the surgery not only hadn’t brought the long-term positive change it was meant to – but in fact it has done the opposite.
Sorry about the long post and for being a bore about this, but I feel crushed. I’m now in an unexpected life-limiting condition and it is a massive blow. My wife is feeling similarly to me, so I don’t want to burden her with more of this than I have. I’m finding it so hard to act normally in front of our children. I am so gutted.Posted 9 months ago
People carry on with pacemakers a lot longer than you think.Posted 9 months ago
my grandad had one of the early ones in the 1980’s and kept going until last year.
bear in mind how quickly medicine improves now, don’t assume life is over.
there is always hope
Sounds pretty shit jamj but I guess you’re now “in it” and you’ll have to, ultimately, accept and live with it. Meantime, your family CAN support you in this
… but, for sure, post up all you like on here and bore the tits off us lot 😉Posted 9 months ago
I really can’t relate to how you are feeling, however you must stay strong, you can’t change what you have been dealt but you can change how you deal with it. I have seen members of my family sucombe to as well as deal with and survive difficult ilnesses. One piece of advice from a surviver is don’t speak to people witht the same condition because you will notice when they are gone – morbid I know, but it really helped that family meneber come to terms with their OWN fight strategy.
Dont do anything hasty take your time, your family are their to support, you as is STW.Posted 9 months ago
It must be an awful shock, but you’d be amazed what people can do with pacemakers.
My father in law is having one fitted on Thursday, and he can’t wait. He’s 85 and just been told there is nothing more they can do for his prostate cancer, but he’s determined to make the most of it.Posted 9 months ago
Jamj,Posted 9 months ago
This time last year I had my own cardiac worries, suspected angina. Fortunately after all kinds of tests I was told it wasn’t so to carry on as normal but the fear is still there when I start pushing myself so I ease up again. It drives me crazy not being able to go as hard as in the past. Obviously not as serious as your issues but I totally understand your frustration and disappointment. I hope you can find a positive outlook to your circumstances and take strength from your kids cos they love you however slow you pedal!
Not sure I have phrased this correctly but it was meant to be supportive. Best wishes pal.
Thank you for your support – it’s appreciated.
To clarify a little. The pacemaker bit isn’t the problem – it’s the heart failure that’s the problem. I’m currently more breathless than I was before my original surgery.Posted 9 months ago
Sorry to hear that Jamj, I assumed you were on the mend. I hope you get some way forward with it soon. I can understand how worrying it must be for all.
I’m still waiting for my cardiac MRI to get to the bottom of my issues. Hopefully end of this month!Posted 9 months ago
It never rains but it pours… Pease forgive my typing.
Early-December it had a trans-ichemic attack – which although frightening, only left me with temporary dysphasia.
Mid-January I had a planned pacemaker replacement as I needed both side of the controlled.
This evening I had the symptoms of actual stroke, with right-weakness, facial droop, my speech feels severely affected. A CT scan has shown damage to my brain – yet to by clarified by the consultant.
I just need a break. Writing this from my hospital bed. Feel pretty beat up by life.Posted 5 months ago
That’s terrible. One thing I can tell you is that every stroke is different and the brain can do amazing things. I’ve had both a tia and a stroke. I was told wouldn’t walk again and yet I’m back riding my bike.
If you are in hospital then it’s the right place to be right now.Posted 5 months ago
Seawman. Thanks for letting for alone right now. I can’t tell you how much that means right now.Posted 5 months ago
Jesus wept Jamj, that sounds like a series of really very difficult issues to have to deal with. Lots of love from all of my clan to you, I can’t imagine how this must feel.
FWIW, three wee things I would offer:
1) Its ok to feel like you do, totally understandable!
2) Challenge your healthcare team – seek to understand every diagnosis, treatment and intervention (apologies if you aha done this already, but a better mutual understanding is often. really good thing)
3) In time, make a plan of the things you can do and the steps you can take – maybe not right now, but taking positive steps when the time is right will be awesome
Wishing you all the best!Posted 5 months ago
You’ve had a really tough time.Posted 5 months ago
At the moment, you’re in hospital and they’re there to look after you. So you’re in the best place.
You have come across as a positive and kind person on so many advice thread s.
Try to do what you can to stay positive and be kind to yourself for this time. It’s not easy what you’ve had to deal with.
You’re in our thoughts.
Yeah. It’s pretty scary and unknown health issues are the worst. As per big Scot start small – every journey begins with a single step and all that guff. It’s a long road but lots of people have been on it and had victories.
Remember physicians are always happier to be proved wrong with a better outcome than get in trouble for an initial optimistic diagnosis so they’re cautious. Neurologists are also dealing with the most complex bit of the body so it’s going to take a while for everything to be understood.Posted 5 months ago
Thank for for your kind words. It means a lot.Posted 5 months ago
Man hug and KBO.
MingPosted 5 months ago
“every stroke is different and the brain can do amazing things”
Sweaman hit the nail on the head there. I too suffered a stroke and lost all use of my left side, it’s the scariest experience I have ever gone through, swiftly followed by the unknown of what was next for me.
But thankfully the brain is a persistent little bugger and was busy rerouting pathways and finding alternative junctions and I slowly got back to mobility.
Life has a habit of kicking you when you’re down but no one says you’re not occasionally allowed to kick back. Take it easy for now and know there’s an outlet to share your fears, pain and joy right here, you don’t have to travel through this on your own.
All the best and swift recoveryPosted 5 months ago
Colleague I worked with had a stroke- she returned to work and recovered mobility and speech.
Rest and healPosted 5 months ago
It seems brutal right now but this will improve. Focus on your rest and recovery.Posted 5 months ago
Best of luck.
That all sounds properly scary! Best wishes on getting it sorted and popping out the other side intact.
Watched my dad go through the stress and trauma of two strokes now and he’s still fighting on. I’ve got to watch my heart as I’ve got an arrythmic beat (misses every 8th beat when below roughly 100bpm) and it’s slightly enlarged. Heart issues will be in my future at some point, make the most of what you have people.Posted 5 months ago
@jamj1974 Wow, but go watch the latest 24hoursinER bloke who was stabbed in the heart only had 30% heart function has a pacemaker, hes now on the transplant waiting list but hes doing pretty damn good given hes lucky to even be alive.
Life is what you make it IMHO, my dad had a heart attack at 40, a stroke at 64 day after retiring from work ironically, then he got vertigo then they found cancer, he had stents put in his heart, another stroke, all the surgery chemo for the cancer etc didnt stop him going rough shooting with his springers or gallivanting all over the place with my mum.
I have more health conditions you can shake a stick at, if I was a race horse theyd take me out the back and shot me, daily pain, but I dont let that stop me.
I now do yoga with adriene daily, plus a quickish walk pace of usually 4mph but I have tendinitis at the moment so its only a 3.5mph pace and I do some spinning after wards to cool down. So far since last year I’ve managed to lose 3.5 stone in weight and I am not dieting either!
If what you used to do isnt possible do something else, if you cant run try walking, what about swimming, yoga, weights, even just situps and or pushups/plank??Posted 5 months ago
Jamj74 a friend of ours was born with a reversed heart. He had several operations as a child and eventually it led to him having heart failure and the need to have a heart and lung transplant. He lives in Kent but the surgery was done in the Freeman in Newcastle as they had done the original work when he was a child. His care has been excellent and he now lives a pretty normal life. If you are the least bit unsure about the care you have received start asking some serious questions to your surgical team and if in doubt ask for a second opinion. Good luck we are all routing for you.Posted 5 months ago
Guy at work had a stroke, he’s back at work and fine now. Lots to be optimistic about.Posted 5 months ago
Thank you greatly for your stories of hope and encouragement. They really do help. I have rested a lot today – when I was allowed to and feel in better spirits.
A road ahead to travel but fingers crossed… Also, treatment here in Heartlands has been amazing so far..Posted 5 months ago
Man, that’s rough, nothing to add to the sage advice above except, NEW BIKE!! Heal well brah.Posted 5 months ago
Feeling better this morning and my speech is much improved!!!Posted 5 months ago
Great to hear that Jamj, you’ve had one hell of a time. Hopefully things can atleast settle enough now for you to gather your reserves. Feel free to email againeven if it’s to off load a bit.
I was back in hospital two weeks ago with chest pains. No signs of heart damage and told to take the week off and rest up. Oddly it helped quite a bit lol! But I was bored as hell, a feeling I’m sure you know all to well. Get my cardiac MRI results finally on Wednesday!
Hope the recovery continuesPosted 5 months ago
Good luck for your cardiac results longdog!
I have been released from hospital and now resting at home. My speech sounds pretty normal until I am tired and my right side gets tired more too.
Other than that, I am feeling more myself and a little more positive.
Thanks to all for your support. It means a lot to have people trouble to take the time to respond.Posted 5 months ago
Healing vibes…my gym buddy is a wheelchair user. Just does what he can with a smile on his face. Never complains about anything, in fact since helping him I don’t either.
Just go for the small wins.Posted 5 months ago
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