Waiting - impatiently

[OldaYoda]

After 15 months of tests and waiting and waiting and tests I was told back in February that I needed CABG. In March is saw the surgeon, who ordered more tests, which were done by first week of May. It went quiet until July - I had preop of 9th and another round of tests (blood, ecg, xray). Its all gone quiet again. So I phoned the waiting list team today - and was told it would be months before the operation. Part of me is glad - I really don't want to be cut open! But it is so frustrating - I have been on the waiting list since February, but they seem to be taking the date as much later than than now. I am not the most ill person - but the condition limits what I can do, it has stopped me going abroad on a holiday, I went for a short stroll, and as it was uphill I had to rest and take the GTN spray, everyone else was waiting for me, I am used to being the one in front. It also puts more work on the rest of the family.

Moan over - two questions

1. How do i cope with the frustration and depression while I wait?

2. Is it worth saying I will take a cancellation?

My boss is almost as keen to know when I will be out of action as I am!!!!

[Ageingfast]

dear Yoda

Yes go on the short notice list. You lose nothing and might gain a lot. Plus, if offered a date imminently then it’s less time to panic.

Perhaps your employer would pay for private op. Might be a thought.

I had a AVR heart op four years ago. Magic, wonderful. Those medics really know what to do. I have no aftermath. Just got given my life back.

Good luck

Sooty

[OldaYoda in reply to Ageingfast]

Thank you so much, very encouraging.

But one line made me laugh - my employer won’t even send me a bunch of grapes, let alone pay for the op 😂

I opted not to join their heath care scheme, because it would cost me a lot in tax anmd it wouldn’t have covered my knee replacement and it’s too late now because of pre-existing conditions!

[Ageingfast in reply to OldaYoda]

But just maybe they would pay to get you back to work. Just maybe.

[Thesnowman51 in reply to Ageingfast]

Mine was paid for by the NHS at a private hospital £45,000.00. Don’t think there are many employers that will stump up that amount!

[Ageingfast in reply to Thesnowman51]

Sounds about right. I had mine done privately as all hospitals were closed due to covid. It cost £43,000 but I know a lot of stuff was discounted as the hospital was only one third occupied. My op was observed. Confirmed I had just a few weeks to live. So far I have had four years of life.

I am sure you are worth that sort of money, just not recognised by employer.

Sooty

[BeKind28-]

Hello

I am so sorry your op has been put back that must be so frustrating I know I would have felt that way

All the tests you have had done I had them all before my triple bypass and I was always under the impression the results had a sell by date on them so for example when the tests are done usually up to 3 months and you have had your op

I would certainly not hesitate to get my name on the cancellation list and while I was I would query about the tests you have had done and how long will they last before they may be saying they need doing again

I really do hope they get you in soon the waiting can be the worst bit

Let us know how you get on x

[Chappychap]

Hello OldaYoda, your comments about needing to stop during walks was exactly how I was, so what I'd really like to share is just how transformative bypass surgery can be.

It's nearly six years now since my CABG procedure, and they have been some of the best years of my life. I genuinely feel ten or even twenty years younger. Like you I was struggling to keep up, now my wife and I are the first ones on the dance floor and the last to leave.

So stick with it, I know it's a slog, but it really is worth it in the end!

Good luck!

[Bluey73]

It's very sad that people have to wait so long for tests & surgery.

My partner was lucky to have his done privately and he is day 7 post surgery today (bypass surgery)

It was such a smooth journey from the start & everything happened quickly. He was able to choose his cardiologist and given the chance to choose the date of his surgery. The care he has received has been outstanding and so far his recovery has been amazing. (Early days I know)

The waiting is by far the worst part _ my partner would say the same and we only had to wait about 3 weeks from the day we were told he needed surgery until the day of his operation.

The only advice I can offer is try not to worry & get worked up over the thought of the surgery, and I wish you all the very best.

[OldaYoda in reply to Bluey73]

Thank you - I am mostly at peace with the waiting, it’s much more the uncertainty of the “when” that is getting to me. It’s when you get asked to plan a trip, or will you be able to do something in a couple of months and having to say “it depends” that really bugs me!

We have a week away from next Friday, so I am hoping to get a good rest and relax - once that is over I will see about going on the cancellation list.

I love hearing that people are recovering well it makes the whole thing seem worthwhile

[Bluey73 in reply to OldaYoda]

Totally understandable. I chose not to Google too much about surgery, but instead joined this forum as I wanted to hear positive experiences.

My partner had some pain on day 1 but since then has been pain free, some discomfort in his chest when he's due pain relief but he says it's very mild. He's been on only paracetamol since leaving hospital & is eating and sleeping and showering himself. Stay positive and I'm sure everything will go well for you.

If it's any comfort, my partner thinks the surgery & initial recovery has been nowhere near as bad as he was expecting.

< He is 51>

[OldaYoda in reply to Bluey73]

Amazing! That's what I am hoping,(but I am a little more mature!)

My wife and I went to a pre-op meet the team gathering a couple of weeks ago. I was told the pain is lot less than having my knee replaced - I made it through that a couple of years ago, so I am expecting this to be a breeze! After the knee op I had to be taken to a friends house to shower - ours is over the bath and there was no way I could get in there for three weeks! I am hoping to be better than before in a matter of days! (That may be unrealistic, but lets hope). Being only on paracetamol would be such a blessing all the opiods really do awful things to me.

Bluey, you have made my day!

[Bluedolphin123 in reply to OldaYoda]

I know how frustrating the wait is after waiting 15 months too.

On the Tuesday I booked a week in Cornwall for the Saturday then on the Wednesday I got a call to say surgery planned for the Sunday , no time to worry but impossible to plan anything 😂

I’ve been home 2 weeks since open heart surgery and I’m glad it’s finally done and to be honest it’s not been nearly as bad as I feared and I can already see the improvements daily.

Good luck 😊

[OldaYoda in reply to Bluedolphin123]

What a pain... At me pre-op I said I couldn't have the op before 19th August - my wife is away camping with church youth group this week, then next week we have a "holiday" in Yorkshire, not sure it's possible to relax on the wrong side of the pennines though! After that anything is fair game!

I am so glad I posted, such a lot of encouragement and great stories. I am feeling better already (and I managed two whole days without using the GTN spray, so the week is getting better!)

[Bluedolphin123 in reply to OldaYoda]

Hopefully by the time you have your operation it will be cooler .

Enjoy the summer and your holiday together

I’ve managed to reschedule Cornwall for September so I’ve got something to aim for !

[Sharpglo]

oh how I feel for you. Do you have such a thing as a Patient Advocate in UK? We have them assigned to hospitals etc. Here in NZ. You lodge a complaint etc with them. I have expressed discontent etc that way and to the hospital board and local MP’s. Waiting etc still bad out here also. I was diagnoses last Nov heart failure in need of a pacemaker, op twice cancelled, hoping the 8th all go again. I was devastated when about to go into theatre surgeon called away. Mifmit happens again i’ll need a tranquillizer. All the best.