Aortic valve replacement- the journey begins

[Cottagegardener]

I’m so new to this! I was diagnosed with Severe Aortic Stenosis last month - bit of a shock to say the least. The pain/ache in my chest I put down to being less fit than I used to be and the shortness of breath I thought was because I was tired. Even when I got the diagnosis I was in still in denial. I have always considered myself a healthy person, enjoying gardening, yoga, walking. However common sense has now prevailed and I’m due to have a pre op at the Cath Lab next week.

Yes, I’m scared- think we’re all scared of the unknown but I also realise how lucky I am that this problem has been discovered and that the ball has started rolling.

I have been reading lots of posts and replies re AVR and was especially interested to read the replies to granniea’s post from Nic25 and Chappychap - informative, very down to earth and most of all has made me feel much better about what is to come.

[Nic25]

Good luck Cottagegardener - and an amazing picture! Hope you'll be striding through there again soon! Always happy to help in whatever way if I can as I was at the same point as you last summer and everyone on this site was so supportive and helpful. So ask away if you do have any questions... Nic x

[Cottagegardener in reply to Nic25]

Thanks Nic25 it means a lot know there is so much support and understanding out there

[Nic25 in reply to Cottagegardener]

Great. Just to add if it helps I was severe for a good few years before having the op. I had an ascending aneurysm too so by the end was on six monthly checks. Everyone's obviously different and these things progress differently but just to highlight that it may not be a given that a severe diagnosis automatically leads to surgery. But as you say better to find out about it this way than in A&E (which can and does happen). Fingers crossed! Nic x

[Nic25 in reply to Nic25]

But actually if you're having a pre op that's all irrelevant isn't it? Should have read more closely. D'oh! Good luck anyway! Nic x

[Chappychap]

I had a bypass operation, but I assume your procedure will also involve open heart surgery with the breast bone being opened.

You'll likely be told that the back to work time is approximately six weeks if you have a sedentary job, and eight weeks if you have a more physical job.

Even though everyone heals differently these timings are there or thereabouts for most people. However, they're based around the time it takes for the breast bone to knit back together. In reality it takes quite a bit longer for the muscles and sinews to repair themselves, and longer still for your body to get used to the medication. Many people say it's actually six to twelve months before they feel entirely back to where they were before the operation. You'll be most of the way there after a couple of months, but don't feel despondent if it takes several months longer before you're 100%.

One of the most critical things that determines how quickly you recover is how much effort you put into your breathing exercises and into taking daily walks. Your lungs take an awful beating during open heart surgery, with multiple small pockets of micro collapse. Reflating your lungs requires quite a bit of effort, and to be honest in the first few weeks you'll probably not feel much like the breathing exercises (especially the long exhales that force you to cough-they're not the best of fun before your breastbone has healed!). However, pushing through with both breathing exercises and with brisk walks pays tremendous dividends and can really lift your spirits as you see quick and sustained progress.

Good luck and keep us posted!

[Cottagegardener in reply to Chappychap]

Thanks chappychap - I guess you need to put some effort into recovery even if it is uncomfortable - lots to take on board.

[Suzy1954 in reply to Cottagegardener]

Good luck Cottagegarden.

I had an AVR 33 years ago. Still here 👍 let us know how you get on.

Sue

[Cottagegardener in reply to Suzy1954]

Cheers Sue! 33years that’s amazing!

I’m so pleased I took the plunge and posted this evening.

Had some good positive responses and am feeling better about things already 🙂

[Jamse]

In June 2004 I had an emergency AVR

by luck i got a human tissue valve (so no blood thinners )

as it was an emergency i only waited 3 days

[Cottagegardener in reply to Jamse]

That must have been quite frightening for you James but I guess on the positive side you didn’t have too much time to dwell on things.

Keep posting, keep well 👍

[MichaelJH Heart Star]

Like Chappychap I had a bypass last year. He has covered all the salient points well. The importance of the breathing exercises cannot be overstressed as at rehab. I noticed those who admitted not keeping them up seemed to struggle more. My initial recovery was slow but I think the fact I left hospital as the heatwave started was a contributory factor. I felt very much back to normal after five months but then needed unrelated surgery that set me back somewhat. The other important point is lifting. Follow the guidelines as I have encountered one person with a "failed" one who was expecting further surgery.

You say you are having a pre-op in the cath lab. Does this include an angiogram? Quite a few people here seem to have bypass surgery with AVR - a sensible move to prevent multiple OHS. Good luck!

P.S. Is the photo nearby or further afield. It reminds me of a spot in mid-Wales.

[Cottagegardener in reply to MichaelJH]

Thanks for you comments MichaelJH - yes, an angiogram was recommended by my consultant just to see if I will also require a bypass.

The photograph was taken in The Fairy Glen in Parbold Lancashire. It’s a beautiful spot and at this time of year it’s covered in Bluebells and wild garlic. 😊

[Nanny72]

I had mine as an emergency on my birthday in 2018. It was a rocky recovery for me but after six months I was back to walking my dog five miles a day.

I actually found the angiogram worse than the surgery.

All my best wishes to you.

[Cottagegardener in reply to Nanny72]

Not the most fun thing to happen on your birthday Nanny72 but so pleased you are back to walking your dog.

Can’t say I’m looking forward to the angiogram but I know it’s being carried out to make sure I have the best possible treatment. ⭐️

[granniea]

My thanks to everyone.

My husband's case is a bit different to yours Cottagegardener. He has had NO symptoms of any kind. He didn't feel great after Christmas and went to the GP and so the ball has been rolling for us - although due to a communication delay he won't have an angiogram until the 21 June. It is nice to know someone else is going through this at the same time as we are. Hopefully we can support one another.

I too have been reassured by the kind and detailed conversations. I do need to ask one question of all those ex-patients - did you have your nearest and dearest come to see you the day of the operation - after you had had it?

[Suzy1954 in reply to granniea]

My husband spent the day at the hospital while I was in theatre. Then he saw me briefly afterwards and came back with my sisters the next day. The hospital were fine with that. I must say, I wasn’t really aware of him being there the day of my op. Think it helped him though.

[Nic25 in reply to granniea]

My wife stayed in the hospital accommodation and was in ICU when I woke up, which I really appreciated. I discovered later it was late but they allowed her to stay especially. My children saw me off the day before and visited at the weekend (op was on a Thursday). Luckily I had just come out of the high dependency unit and had the tubes taken out of my neck so looked a bit less of a sight. Then brother and brother in law managed to visit over next few days but I was out so quickly no one else managed to get their act together! On the morning I was first on the list and so taken down very early so visiting didn't come into the equation. Hope that helps! Nic x

[Cottagegardener in reply to granniea]

Nice to hear from you granniea and would be good to keep in touch x

[JJL15]

Hi, I had severe aortic stenosis for a number of years but I was also as-symptomatic . I only got the surgery because I went to myGp telling her I want to start a family. 6 weeks later I had it done! Good luck and you will absolutely fine. I had mine aVR done in 2012 I’ve since had 2 kiddies and lead a very normal life . don’t overdo it and just take the time to recover , it’s not as bad as you think

[Cottagegardener in reply to JJL15]

Nice to hear from you JJL15 and good to read your story. 2 youngsters will certainly keep you busy!

I had my pre op for an angiogram today which will take place on Monday 20th, they want to check my arteries, if I need a bypass as well as a new valve they’ll do it at the same time. The current waiting time for surgery is apparently 8 to 12 weeks.

I feel like everything is happening quickly now and will be glad when it is done even though I’m pretty scared of what’s to come.

So many kind and supportive people have responded, I feel quite humbled.

Your positivity JJL is brilliant ⭐️

Sending grateful thanks to you all

🙏

[JJL15 in reply to Cottagegardener]

Oh that makes sense to do it all at the same time I guess. My sister had her aortic valve replaced 6months after me (she is 2yrs old than me) and they replaced her aortic root at the same time too. We both will need our AV replaced again soon as we both opted for a tissue valve so we could both have a family. yes I can totally imagine how scared you are, it’s normal we are only human we naturally worry but you are in the best hands, these surgeries are classed as “routine” to the surgeons, to us so daunting but they do them all the time. and the end goal outweighs it all. Just try not to worry , invest in a V shape pillow some good box sets and take it easy afterwards, don’t over do it - good luck with it all

[Mark_tourguide]

Have to say that the comments and support on this site are fantastic! I’m asymptotic valve prolapse (not even sure which one!) so am anticipating some form of treatment at some stage (am in mid fifties) but reading thoughts and stories of others is really helpful. Would be good to know how you are getting along CG.

[080311 in reply to Mark_tourguide]

Hello Mark

Thought I would jump in, I had Aortic valve replaced and bypass done 4 years ago at the age of 68, life is good have an echocardiogram yearly to check the pressure from the valve and have a wee look at my heart, bloods and review of my medication by my GP but other than that nothing. I am grateful every day to the medical team that gave me my life back.

If you follow all the advice you are given following your op you will get back to living your life. No arms above your head no lifting anything heavier than half a kettle of water no pulling or pushing movements so no mowing the lawn! You have to let the sternum heal like any broken bone.

I wish you lots of luck when you get your date.

Best wishes Pauline

[Mark_tourguide in reply to 080311]

😀