Aortic valve

[bee862]

Hello I am new here. I am a 31 year old woman. I found out I have to have surgery on my aortic valve. I am so terrified of it all. I have so much I want to know but don’t know where to turn. I was wondering if any one is going through or been through the same thing. Thank you

[Shandypants]

Welcome, I’ve not been through surgery but I am sure you will find someone on here who has and can answer questions for you. If not I think anyone will tell you the same that the best thing to do is write down the questions and then you will have them all ready for when you meet with your consultant rather than trying to remember them all.

This is a great place for support and making you fell like you are not alone in anything that have or will go through.

Tania

[bee862]

Thank you for the kind words. I have never been so scared in my life and I do feel alone even though I have my mum and partner. They r amazing. I’m not sure why but I’m having trouble seeing replies. Thank you for taking the time to talk to me. I hope you are doing well

[Fredders]

Hi Bee

I had aortic valve surgery on 7 December. I've had a mechanical valve to hopefully avoid having to have further surgery in the future as I had to have a splenectomy last year. Have you discussed with your cardiologist whether to have a tissue valve or a mechanical valve yet? There are pros and cons to both types. One thing I would suggest is that you make a note of any questions you have because when you meet with your cardiologist all questions will go out of your head.

It is perfectly normal to be scared, you've just been told you have got to have heart surgery, but there are plenty of us on here who have been through heart surgery and AVR in particular, so fire away with any questions you have and we'll try to help.

You will probably be in hospital for about a week and the first day you will feel c**p, but you'll be surprised how quickly you start feeling human again! They'll have you out of bed the day after surgery. You'll find side effects of the anaesthetic include lack of concentration and memory, food tastes like cardboard and you can go from being wide awake to totally knackered in seconds. Don't worry, it does get better. Take the painkillers and don't suffer in silence. If you are in pain you won't want to move which is counterproductive.

You will get through this fine. Don't be afraid to ask for help.

Wendy

[Shandypants]

Hi bee

No problem. My family have been great but none of them have been through heart problems.

I’m doing good thanks. I’m one of the lucky ones only had a “little” HA 🙂

Just take everything one day at a time both before and after treatment and remember there is no such thing as a daft question

Tania

[bee862]

Hi Tania. I am glad you are doing good. Anything to do with your heart is scary. Keep strong.

Hello Wendy. Thank you for getting in touch. Yes I spoke with my surgeon and after a long think I chose a decellularised homograft. They put me on a clinical trial called arise at the royal Brompton in London. They Said it would be good for me because of my age. I have a appointment on the 15th December to attend the cardiac surgery upr. They told me they want the op done before Christmas. I am finding it all very overwhelming I am so scared I’m going to die. Also I have a phobia of hospital. I was wondering did you feel really poorly before you had your op. Some days I feel so ill. I felt really bad during my last period I don’t know if it was linked or I just felt more poorly than normal.

Thank you for taking the time to talk to me

[Fredders in reply to bee862]

I completely understand your feeling overwhelmed, it's a scary prospect having heart surgery. My situation was very different in that I was diagnosed with a heart murmur when I was 16 and it wasn't until I was in my early 50s that I had to have my first AVR. Sadly the valve didn't last as long as expected, resulting in my second AVR last month. The only symptom I had pre-op was breathlessness, but I know some of the others have had other symptoms.

When you have your appointment next week explain to them about your phobia, if they're anything like Glenfields they'll take the time to explain everything to you and hopefully put your mind at rest. Hopefully you should only be in for a week and then you can start the road to recovery at home.

If you need any info just ask.

Wendy

[KazSumm]

Hi Bee862 welcome you will get all the advise and personal experience you need from the friendly bunch on here.

I had Aortic Value replacement 18 weeks ago, had no idea I had a problem, was at work in the morning and by 4pm being told I was beings admitted I had chronic Stenosis, spent 2 weeks in my local hospital then off to Southampton had the op the next day. I know how scared you are been there got the tee shirt 😆 I can’t totally take your fears away but I can reassure you that it’s not as fearful as you imagine . I wanted to know as much as I could about what how and why and how it was going to be resolved. I’m 57 still classed as young for this condition and it was genetic, nothing I had done. I had a biological porcine Value which will have to be replaced in 10-15 yrs but then it will be done by angiogram the plus side I’m not on warfarin . Because you are so young there is a new Value they are using called Edward something sorry can’t remember its full name but there have been a few on this site that have had them it’s a cross between a mechanical and biological one and it’s supposed to last for life and you don’t need to take warfarin. The operation itself was a lot less scary then I imagined and I recovered really quickly only spent 12 hours in on intensive care then went on to a normal ward and was up and walking the next day, home 5 days after op.it will be 3 months recovery, I have been back a work for 4 wks now . You are young and will recover really quickly. Anything you want to know we are here just ask. But for now stay calm and take care Kaz❤️💕💖

[bee862]

Hello kaz. I have been home since I found out at the end of September but felt so poorly at times. It’s just so scary. I don’t stop crying. My poor family 😄. Gosh it was all very quick for you. The waiting is terrible. The valve I have chosen is supposed to last me the rest of my life and no medicine. Did you feel very unwell before your op. I have to say it don’t sound so bad the way you put it but I just can’t shake the terror. I haven’t really looked into it much because it scares me so much. I want to know but I don’t. If u know what I mean.

Thank you for responding

[KazSumm in reply to bee862]

Hi Bee862

Yes I did have a few symptoms before hand but put them done to being unfit after a operation I had in Feb 17 on my Achilles which was a 3mths recovery, I felt tired, and started to get out of breath when i did anything like climbing stairs, going up hills, then it happen just changing the bed and doing housework. I passed out while shopping, it was a hot day and put it down to dehydration then the big one happen 2weeks later, after going up a small flight of stairs I got that burning in the throat, shortness of breath, knew I was going to pass out and made it to my car, fortunately I was with my Mom and in a hospital car park ( I’d taken her for a follow up appointment) she said I went grey, had a small fit, and went unconscious, she couldn’t find a pulse and got help, 2nurses came and were just going to start cpr when I took a big gasp and came round. Didn’t want to go too hospital, my GP kept the surgery open and waited for me, by the time I got there I felt find, then she found the biggest heart murmur she’d ever heard, went to work the next day and had a phone call to say go straight to the hospital. This is how I looked at it, I see it as a positive not a negative, it’s been discovered and the alternative is not going to happen, I also had the best health MOT so I know nothing else is wrong with me. I took a deep breath and said to my self I have no alternative, I’ve got to do this. You will be amazed how much strength, courage you hold deep inside, I shocked myself sometimes 😂 Talk it out with your family because they are experiencing the same fears, read the Info books together, don’t look at any thing on U Tube videos 😂 our GP talk to my husband and explained everything, he felt empowered and dealt with the whole thing with more confidence. I decided I didn’t want anyone with me on the day of the surgery or for them to see me until I was on the ward,that way I didn’t have to pretend neither did they, if I wanted a 10min breakdown I could, the nurses were fabulous. Everyone is different, I had no bruises on my chest, yes your sternum hurts, I was fitted with a posthorax vest which became my best friend for 8wks, I can honestly say I was never in any real pain, just uncomfortable and only ever took paracetamol. I did everything they advised me to do. Your body is amazing on how it repairs it’s self our surgeons and the technology they have is awesome, all our nurses and staff are fabulous, we are so fortunate to have a service like the NHS. It sounds like you are having the new type of value I mentioned, brilliant news. So I’ll stop waffling on, if you need anything just ask, even if it’s to moan, we listen.

Kaz💕❤️💖

[bee862]

Thank you Wendy for replying. Oh I see you poor thing. I was born with two cusps but I didn’t know anything till now. It’s so much to take in. I have had so much time to worry. I’m so sick of lying in bed watching tv. I have so much I want to know but my mind has gone blank. I appreciate all your replies so much. Thank you

[Guapa]

Hi Bee, I was given a replacement aortic valve 3rd October this year in Bristol.

My story is my husband & I (68) own a villa on Spain's Costa Blanca & go twice annually for 3 months. We'd flown there 31/8 & I found I couldn't breathe well 3/9 when I went to bed. We went to local A&E next morning, I was told I had bronchitis & given meds & Ventolin spray.

On the night of 12/9 I again felt breathless so 13/9 we went back to the A&E where it was decided I needed more tests as a blood test showed I might have a problem with my heart. I was told they'd keep me in for 1 maybe 2 nights & I was put in a single room, ensuite, with a drop down bed for my husband so he was with me constantly.

I had endless tests & was looked after very well but was told I'd need an open heart operation & could either have it there or in the UK. I chose the UK. My husband had informed our travel insurers I'd been admitted & needed to be transported home to Bristol then directly into hospital. They were excellent, they arranged it all & on 22/9 I was taken by ambulance from the hospital to Alicante airport directly to the Learjet air ambulance, flown to Bristol & straight into an ambulance to Bristol Heart Institute cardiac ward. I stayed on the ward from 22/9 to 3/10 then a night on the CICU plus 9 nights on the High Dependency Unit.

Finally I was allowed home 12/10. It's now over two months on, it's been hard for me but I've been told I'm doing well. I attend a Heart Failure clinic who you likely will be advised to attend. I've been released from the hospital after being seen by a surgeon who attended my op. He said I should be able to fly out to Spain April. Unfortunately my scar is very tender as I've keloid skin. It is sore.

I've joined a good Facebook group called Pumping Marvellous facebook.com/groups/helpfor...

You'll be fine, we are all supportive here & do join the fb group.

Janice

[kefalonia1 in reply to Guapa]

Hi Janice, l had my AVR and pacemaker installed at BRl, we are so lucky, the cardiac dept has a certificate of excellence. My surgery was due to my heart being damaged by sepsis so l was in there for 3 months where my hero consultant Mr B****, saved my life twice. Hope you continue to improve. Sue.

[bee862]

Hello williamp. Glad to hear your op went well. I’m with the royal Brompton hospital in London. Thank you for the encouraging words. It really helps

[bee862]

Hello Janice.

You poor thing sounds like you had a really bad time. I’m so happy your on the mend. It’s good to hear all your stories. I have been to scared to try and find out how other people’s stories have worked out. But with the op coming up it has really helped. Every ones story is different and but with a happy ending. I was so scared I was going to die. Well I still am a little but your stories have helped so much. Thank you

[bee862]

Hello kaz.

Yes my symptoms come on all of a sudden. I woke up about 6am had a rush of cold run through my vains and my heart felt funny. I fell back to sleep for a little. When I woke up I kept going dizzy and it felt like my heart was beating so fast with a pain in my left arm. I just felt really unwell. Went to a and e they sent me home even tho my heart was beating fast. I couldn’t get a appointment at the GP. I was in such a state because I felt so ill. My partner called my GP and had a moan a got me in. My GP found a heart murmur. He sent me to the hospital. They found it was my aortic valve took 2 days for them to find it.

This was the end of September. I have felt so poorly I haven’t really been out of bed much. I have had to stay off work.

Because I have so much time to think. I’m driving myself crazy. I can’t think of anything else but the op. And staying in hospital. I have a phobia of hospitals and I get home sick. 😂I’m a mess😂. I have a appointment at the hospital on the 15th December. And they said they want my op done before Christmas. So could be any time.

I just can’t see past the op. It’s such a big hurdle to get over. It’s so overwhelming.

Thank you so much for sharing your story with me. You make it sound not so bad.

Everyone on here has been so kind and it’s comforting to hear from you all. Thank you

[Hidden]

Hello Bee

Welcome to the aortic valve replacement club 😊 Lots of advice already given I see, everyone on here is very supportive and kind.

I had my aortic valve replaced on 20th November and I'm recovering well. I was by far the youngest person on the ward and I'm 49 so I expect you will be the same.

Your fears are completely understandable my dear and don't be afraid to ask as many questions as you like.

Take care.

Claire x

[gal4God]

I had a valve replacement in August. Still on pain meds. Been told it’s a 6 month recovering period.

[arethusa_12]

I too had my aortic valve replaced, this was in Liverpool back in March and to be honest, for some reason I didn't worry too much before hand because I had absolute faith in the surgeon and the team, and besides it was a choice between having it or not living much longer, so a no brainer to me. I opted for a mechanical valve because its would last longer and should see me out (I'm 63). Reading some comments I was interested to see there are valves now that do not require Warfarin to be taken every day, that must be a fairly recent thing! Just remember its a fairly routine operation these days and it has to be done and you will be fine. I wish you well.

[bee862]

Hello Claire.

My surgeon did say that I am very young to have this. All the doctors I have seen are very positive and I am fit and healthy apart from this. But you just can help but think the worst.

I’m so happy your doing well. You are all very brave people. I just think about it and cry.

Thank you for the kind words they all make me feel a little better 🙂

Thank you

Keely x

[bee862]

Hello gal4god

I hope the pain gets better for you soon. 6 months is a long time.

[bee862]

Hello arethusa_12

You make a good point the alternative isn’t a option so I just have to get on with it. Just wish I could be brave and. It worrry so much.

My surgeon told me my life should be back to normal after the op with no warfarin.

That would be amazing.

I’m glad you doing well. Thank you for getting in touch

Keely

[Kazcoles64]

Hi i havnt actually been through the op yet and like u am terrified but everyone on here has given me so much support so just being here is a step in the right direction. Try to stay calm i know exactly wot your going through and so does everyone here so use us to vent at or simpy just for a chat or advice it will help u come to terms with the diagnosis it has certainly helped me. Good luck and keep us informed x

[bee862]

Hello kazcoles64

Awww is the waiting driving you crazy. It is me. I want it done to feel better so bad but I’m so terrified at the same time. Do you have a date yet. Do you feel very poorly.

People on here have helped me so much already.

I didn’t want to come on here at 1st because I was scared to talk about it. I’m so glad I did now. X

[bee862]

Hi williamp.

Yea they say they are sister hospitals. I would have been at harefield but im on the arise trial. It’s going to be so hard for my family to get to see me as parking is terrible. We was up the hospital 5 hours and it cost us £25 to park.

I’m trying so hard to not be scared but sometimes it just overwhelms me.

Everything thing about it is so scary. I have had a lot of tests done already. I have a appointment on the 15th December. Think I will be meeting my surgeon then.

[Jb1958]

My daughter is 29 and had valve surgery on Oct 3 in Bristol. She was born with a bicuspid aortic valve and had her first surgery at 10 weeks old. She has had annual check ups and was told about 18 months ago was told she would need her valve replaced as it was getting narrower. She decided on the Ross procedure which involves the aortic and pulmonary valve being replaced. It was a long operation but her recovery has been amazing. She wAs released from hospital on day 5 and needed only paracetamol for pain relief. She is now week 9 and feels totally normal. She starts back to work next week.

You are young and the recovery is much quicker. Hope the surgery goes well and I’m sure you will be back to normal in no time!

Julie

Ps Janice my daughter was in the opposite bed to you the morning of her surgery and think you had surgery the same day.

[bee862]

Hello Julie.

Wow sounds like she is doing amazing. What type of valve did she have.

Thank you for sharing your story it give me a little more confidence with each story I hear.

I really hope so and I hope I’m not in hospital to long. I’m such a baby.

I hope your daughter continues to improve each day.

Thank you again x

[Jb1958 in reply to bee862]

The Ross procedure involved replacing her aortic valve with her own pulmonary valve.

[bee862]

Oh I see. Sorry I hadn’t heard of that. You hear of so many different ones on here. I was only told about 3

[JJL15]

Hiya! Totally understandable, I too was born with bicuspid aortic stenosis (cats eye) but we knew from birth so it wasn’t a shock unlike yourself. I was asymptomatic too so never saw it an issue until I spoke to my GP about starting a family. I had my aortic valve replaced 5yrs ago when I was 28 and never looked back! It is a scary time but you will get through it , it’s a common procedure, I have since gone onto getting married, had a baby boy and today is my due date for my girl. I chose the tissue valve so I could have a family as I couldn’t have mechanical due to having to take warfarin which can lead to problems with the babies so I do have to have it done again in the near future. I think you should carry a pen and paper with u and every time u think of a question or concern write it down and take to you pre op assessment. Or when you see the consultant next. That’s what I did. Really helped . Honestly though as scary as heart surgery sounds, you can get through it I was back to work in 11wks. My older sister by 2yrs had the same surgery 6months after me and again had tissue valve and had a baby since . Just want to make u feel a little less anxious about it. I’ve had a few surgeries in my time and I have to say having a laparoscopy was far worse then heart surgery. Try not to worry yourself too much for now as it will just make you feel worse. You will come out of this so much stronger and healthier. Any ideas when you will be having the surgery? X

[JJL15]

Btw my sis had her surgery at the royal Brompton hospital and they were absolutely fantastic. I had mine at Hammersmith x

[bee862]

Hello JJL15

Thank you for sharing your story with me. Sounds like it all worked out really well for you.

Aww congrats. It’s lovely to hear.

I’m really hoping I don’t find the op to bad. It’s all I can think about.

I have a appointment on the 15th December with my surgeon. I have been told they want to do my op before Christmas.

It’s good to hear the royal Brompton is nice. Do you know what the ward is like x

[seagrum]

Hi,

I had my aortic valve replaced with a bovine (not synthetic) valve in 2011. I had been getting increasingly breathless for a couple of years and finally passed out on the tennis court and about 5 weeks later had the op.

Pre theatre and operation totally painless; first day after the operation I was drugged up to the eyebrows and perfectly happy; second day was uncomfortable but never painful and then from the third day it was steady progress and I was discharged from hospital after 11 days. Naturally you feel weak afterwards and it takes a while to build up your strength and you must eat well, lots of protein (meat, fish, cheese), fresh vegetables and fruit. Gentle exercise started after I left hospital, about one to two hours per day, gradually increasing in intensity over a 6 week period.

It sounds as if you are pretty fit generally and that's good This is important because you recover faster, so work on your fitness before the operation BUT don't overdo it.

They give quite a cocktail of drugs during/after the op which can give you some quite odd dreams but this is only a passing phase.

When you have an animal valve instead of a synthetic valve they normally recommend that you take a minimal dose of aspirin, about 75mg, which is good for you anyway.

Good luck, keep positive, everything will be fine.

I was 77 when I had my op and now I swim, walk, play table tennis and tennis regularly.

[bee862]

Hello seagrum

Did you feel very poorly before you had the op. I have been waiting for a date for my op for 3 months. Tired of waiting now. Very draining mentally. And I don’t feel very well so that don’t help.

Sounds like your doing amazing. I love to hear all the successful stories. I will be having a treated homograft.

Thank you for getting in touch 🙂

[Rev20]

Hi Bee,

Absolutely perfectly normal to feel anxious and scared. please try and remain upbeat and positive though.

I've had the operation and whilst I definatley had my bad moments I tried to take a positive approach and focus on my recovery.

Your in great hands and the operation is pretty much routine for the doctors nowadays. Once you get out of hospital make sure you don't sit at home feeling sorry for yourself. Go for lots of long walks and exercise frequently is my advice.

Im sure everything will go smoothly and i wish you a speedy recovery

[bee862]

Hello REv20

Thank you for the encouraging words.

I am 100% going to try be positive. I can’t wait to be able to get up and about doing things.

Did you feel very poorly before your op.

[bee862]

Hi williamp.

Thank you very much. It’s very kind of you

[Lisa4]

Hi bee862

Not sure if you’re in having your operation as you stated the surgeon wanted it done before Xmas. If you have some of what I wanted to say might not be relevant.

Like you I had a bicuspid valve from birth and it was only after going to doctor with chest, neck and back pains, breathless and fatigue. A heart murmur was found. I had my op on 8/11/17 one of the new Edwards Resilient Valve last 25 yrs no Warfarin. They also found a very large aneurysm in the ascending aorta so I’m positively bionic now. The waiting is awful your mind works overtime. I was lucky enough to work reduced hours leading up to the op so if I wasn’t at work I was asleep. The only thing that got me through it is the surgeons are completing these operations on a daily basis and having been in hospital recovering after my op you see how many people are going through the operation and going home with a successful recovery plan. Put your trust in these experts they are amazing at what they do. When you’ve had your operation make sure you have all the pain relief don’t try and be brave. If you’re tense from pain this will not help in your recovery. Don’t overdue anything it will only be detrimental to your recovery and you’ll possibly end up back in hospital. My final piece of advice is don’t be hurried into discharge. In most of Europe patients stay a minimum of 2 week’s as threat covers when most complications are identified. My ward sister couldn’t wait to get me out as I was doing so well I didn’t get to see my Surgeon before discharge (he was not happy) I’m sure that won’t happen to you but just wanted to warn you.

Please try and relax put your trust in your surgeon and all will be well. I’m 6 week’s post op and although I’ve had some ups and downs I feel a new happy and healthy chapter is about to start.

Take care Lisa xx

[bee862]

Hello Lisa.

Thank you for the reply. I didn’t get my surgery as my surgeon went on holiday for a month. I was happy but also disappointed.

I get breathless I really don’t like it. It’s a strange feeling. Lol. And the dizziness.

Am so scared but it helps when I hear all your stories of success.

Thank you for the advice. How long did you wait for your op.

I hope you have a wonderful Christmas and a happy new year

Keely

[Lisa4 in reply to bee862]

Hi Keely

From seeing my Surgeon in late September I didn’t have to wait very long. Had my operation on 08/11 It was a tough time as like you I felt tired dizzy and breathless leading up to the surgery. I used to meditate (you tube) via my headphones that helped. Hang in there and stay positive. I’m sure there is a help line via BHF where you can have a chat with a cardiac nurse. As I was with Bupa I had one via their service and it was really good to discuss everything with her and voice my concerns and worried. Take care and have a wonderful Xmas and a Happy Healthy New Year. Lisa x

[bee862]

Hello Lisa.

Wow that was quick. Least you didn’t wait too long but long enough. The waiting is terrible.

Was there any thing you did or took to help with being breathless and for the dizziness.

I may try meditating. Not very good at clearing my heat tho lol.

I will have a look on BHF to see if there is a nurse I can talk to.

Thank you for replying

Keely xx

[Lisa4 in reply to bee862]

Hi Keely

Found the link for you

bhf.org.uk/heart-health/how...

With regards to breathless and dizziness no I just used to rest as much as possible and meditate. I don’t think I had as bad as others as I was able to work reduced hours. When they’re back after Xmas break try the helpline Im sure they can come up with some suggestions.

Take care and Merry Xmas xx

[bee862]

Hello Lisa.

Thank you so much that was very kind of you. I will definitely try the help line after Christmas.

No my breathing isn’t to bad but bad enough to notice. The hospital told me I’m not allowed to work. Think it’s because I’m a cleaner. Lots of lifting

Happy Christmas

Keely xx