I'm 31(M), and last November I got sick, really sick. Thought it was COVID as I showed all the symptoms, multiple negative tests, various antibiotics for a chest infection tried I was still the same in February. Eventually I was sent for a chest X-Ray and quite a lot of fluid was found in my lungs, and I was admitted immediately.
What they thought was pneumonia was actually a chest infection caused by Endocarditis on my mitral valve which was spreading to my lungs, causing the lung infection.
I spent 7 weeks in hospital on IV meds every 4 hours, to destroy the infection which it thankfully did and I felt a lot better but not 100%, this was confirmed when they said the infection was on my mitral valve and has eaten away at the valve causing severe regurgitation and would require surgery to likely replace, or possibly repair the valve, wouldn't know until they're in.
That was in August, was told 2-3 months and I was given a weeks notice, isolated and on the day (Monday 29th November) they called me to say emergencies were too many and it had to be cancelled, they then called me on Tuesday to say it would be next Thursday (9th December) but then I've had another call to say it's been cancelled until after Christmas now, and they can't give me a date.
They said they had too many inpatients and had to cancel all outpatient surgeries, regardless of urgency.
I'm very lost, angry, sad, stressed, and just looking for a bit of a support as it feels like I'll never be at the end of this very unpleasant journey I'm on. I built my mentality up for the surgery, my family made plans, I got my life in order. I'm only 31 and my employer has been incredibly supportive and it feels like I've wasted everyones time, including my own.
I think I feel better for getting it all out, I just hope it'll be soon.
Thank you for reading my story.
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lmo90
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Hello lmo90Welcome to the forum, I am so sorry to read your post. You are so very young to be having to face this. I really don’t have a lot of words of comfort only that you will get your op maybe sooner that you might think so don’t unpack your bag.
Thank you Pauline, appreciate the words. I understand how difficult and awkward it is for people to try and give advice for my situation but I appreciate you trying regardless.
Hi Imo 90. I assume that, if this is the case, you have made it clear to your surgeon that you would happily take a cancellation? I'm not saying it will definitely help you, but may just be of some use.All the best.
I don't even think there are any cancellations at this stage but yes I expressed that I'd be able to come at the drop of a hat, the issue being that they require people to isolate, covid tests before being admitted and things like that, so I'm as close to it as I can be, but not anymore it seems.
Hi Imo. As Pauline has said, sorry to hear you are going through this. I was told in February that my mitral valve would need replacing and like you, it would be about 3 months. It was then postponed until August and cancelled once I was already in hospital as the lady in the next bed to me had a positive covid test. I had my surgery in September eventually. I know how much of a shock this is for you as I had my first surgery at 37 which was unexpected. I also had endocarditis after my 2nd surgery which lead to my 3rd. This recent surgery is my 5th and I’m now in my 50s and to be honest, have never felt better. Going back to work tomorrow and exercising most days. So, I guess all I can say is to try and keep up the positive attitude as unfortunately, covid has caused so many issues with all aspects of life. Keep in contact with your surgeon or his team and keep asking for a date. From my experience, it does often help to make a bit of a nuisance of yourself.. You are wasting no ones time and good to hear your employer is supportive. Stay on this forum, keep talking as there are so many people on here with many different experiences who can help. Even if you’re just having a down day and want to let off steam, there’s always an ear to listen. Take care and hope you get your date soon
Wow, thank you for the detailed response. Mitral valves suck! Haha. I'm definitely being a nuisance to my surgeon's secretary and I sent quite a lengthy email to her after having it canceled til after christmas, waiting on a response for that.
You've definitely trumped me there, I thought it was utter farce getting the phone call cancelling my surgery as I'm walking out the door to get into the car, you actually made it into a bed which I bet for you felt like terrible when they said they were cancelling it then for you.
It definitely feels like I was making slow but steady progress, finally getting to see the surgeon in August when it should have been May, and then to finally get a date to then be 2 steps back waiting for even a rough idea of when I might be having the surgery. I just want to feel right again. I've put on a lot of weight in the process as I just feel so lethargic and lazy and my whole life is put on hold waiting for this outcome, incredibly frustrating.
Awaiting an op is always the worst time. At least you have your diagnosis now and the infection has been dealt with. I had my Mitral valve replaced 6 months ago, but was a year waiting for one reason or another. Here, you can read about everyone's different experiences and somehow, sometimes , it helps.I wish you all the best.
Hi Imo90,
I appreciate that it's not always easy what you're dealing with. I'm a firm believer that having a good mentalty is paramount in the whole process, so continous cancellations doesn't help you and accentuates the stress for you and your family.
I was 33 when I had my first AVR, it wasn't unexpected, I prepared well and it was over and done with quickly within a couple of months. My second OHS nineteen years later (pre-covid) was a different story, I was meant to have it in the June, but delays and cancellations came and went, until I got that p***** off on the 1st October I rang the Surgeons Secretary. She asked if I would take a cancellation for the next morning. So 4 hrs later I was booked into hospital. For all my experience, and I wasn't really that anxious, in hindsight I think it happened too quick.
As you've found out Endo is a nasty infection, and to be honest I'm not surprised it's led to surgery. I got it at some point over the next month or so, the surgeon decided that the only recourse was to replace my newly fitted AV and MV, as it happens in February the following year, they were able to repair the MV, but, the AV was again replaced. I can deal with most things thrown at me, but, Endo is the one thing that concerns me.
All I can suggest, is to stay strong and get your mindset where you need it to be. Your time will come when you're meant to have the surgery.
Hi Heed, thank you for the response. I too have tried to stay as positive as possible about it but I've struggled recently with these cancellations and being messed about. I'm waiting for a response the secretary where I'll mention again that I'd take a cancellation if necessary.
Yeah, endo was pretty awful, never felt so bad in my entire life, and the experience in hospital of getting it sorted was much worse than the infection itself too. It was a very trying time being in hospital for that long.
Trying to ride the wave of "at least I can enjoy Christmas now" but when you get a moment to yourself you think how angry you are at the situation.
Hello Imo90. How awful for you ! Unfortunately this is all too common at the moment.I had my heart surgery postponed because of Covid . When I did get into hospital , they cancelled my op just as I was going to theatres!I eventually got it. I'm over 70 and all went well .
It's so frustrating to have all your plans upturned .
I hope the surgeon told you to contact his secretary if you start feeling worse .
As others have said keep in contact with his secretary . I felt sorry for mine, she really did her best for me .
About 3 weeks Imo90 . The operation in the morning developed complications, and they couldn't fit me in the next day as someone else was booked. This all happened when we were just coming out of lockdown & the surgeons were frantically trying to catch up on their waiting list, as their intensive care had been full of people with Covid !
I do feel sorry for hospital staff. My surgeons secretary said she'd had some quite abusive phone calls from people who's ops had been postponed
I have for many years thought that last minute cancellation is the pits. It won’t help, but I heard that cancellation locally could be the lack of ICU.
April 2020 I was advised that my condition was life threatening, yet all ops were cancelled indefinitely. Luckily I felt too unwell to worry unduly.
I went private and the same cancellations were rampant. I got a place in, possibly, the only hospital still taking in patients.
My op was observed, with my total agreement, and the observing medic confirmed How close I was to death.
The loss of potential pension has now covered the huge private fees.
So keep on keeping on and your op will be done. I think March would be ideal, so that rehab will be in warmer weather.
Honestly, the waiting is by far the most traumatic part. Recovery is definite and so very noticeable. 2022 will be your year
Thank you for that Colin, I'm sorry you had to resort to going private to get what you needed to stay alive, that seems just terrible. It's very sobering to hear other peoples stories and realising that at the moment whilst it's pretty horrific experiencing my own scenario, it's nowhere near as bad as what some people have to endure, so credit where it's due that you did get through it. Trying to stay positive this time of the year and hopefully take some strides into the new year ready to be fixed.
Hi so sorry to hear this it must be incredibly stressful for you and your family. Like others have said none of this is your fault it’s just incredibly frustrating as the NHS is in utter free fall and obviously Covid has tipped things completely over the edge.
Have you spoken to PALS team, not necessarily to make a complaint but to raise it as a huge concern and get it recorded.
Do not be fobbed off with the you are young otherwise healthy, endocarditis is very serious as is severe MR. The longer surgery delayed the greater your risk. I’m sorry to be blunt and I really do not want to worry you further but ultimately this is your life health and well-being.
I would always ensure that you are polite but make it very clear that you are aware of the implications of having surgery cancelled and the potential risks of long term impact to your health.
Make a fuss but always respectfully. Keep everything and document every time things cancelled and each time call PALS team. I would even go higher and as a last resort get your story in the local paper. I know it sounds extreme but I really don’t think people have any concept the state successive governments have allowed the NHS to get into and this is the consequence. It’s utterly heartbreaking working in it and none of us who do ever want patients to be going through the experiences that you are currently but we can’t fix it.
Good luck with everything try and stay positive, get out for small walks if you can. Imagine surgery like you are going into battle and you need to be battle ready so try and not put anymore weight on and keep as fit as you are able.
Thank you for that response, I've never heard of PALS before so I'll definitely look into that and get in touch.
I always try and remain respectful when speaking to people, I understand that none of it is their fault, but I also don't want to seem like a pushover that because I haven't kicked off I don't need to worry about if that makes any sense.
Hi Imo90All the empathy coming your way, and good to see the hearties here giving you support. Just an idea for something constructive and relevant to do in this awful waiting phase ( I had a similar experience when everything was closed down in the first lockdown and staff were diverted from cardio to deal with Covid.) Perhaps you could do some online awareness raising and NHS support on social media? There are lots of news stories right now. Maybe just commenting on threads or supporting positive ideas would make you feel more of an active part in your race to be treated. As people above have said, the NHS is in freefall for many reasons. We can all do a small part to save it. As Bevan reportedly said,, 'The NHS will last as long as there are folk left with faith to fight for it'. Wishing you all the best.
Very true, thank you for your comment. I was thinking about a bit of charity work / fundraising once I'm on the other side of all this, great idea
Hello, I do feel for you. All those things you feel are how most people feel when their ops get pushed back. My partners admission to Sheffield hospital on the 15th December has been pushed back to February and he's feeling like you. We just need to hang on in there.
I feel for you, it's such a setback, mentally and physically. I guess we have Christmas to think about now to maybe take our minds off things for a few weeks and then refocus come the new year.
If it helps I'm only 34 and had a leaky valve for 16 years, I have a lot of side effects from it like pvcs breathlessness etc and I'm just on beta blockers to control the extra beats that are there some make it through then I get a bit anxious. I'm not severe enough yet to operate on even though both flaps are leaking and I have a lot of side effects.
Hang in there you'll get your op soon I've only seen positive posts about people having the valve replaced and I've seen many on this forum that's been cancelled once or twice before they got one. It's only 3 weeks till Christmas look at it that way.
I'd imagine with the new variant they are preparing the hospitals for the worse over Christmas.
My reply isn't helpful but I hope you get your surgery booked in soon take care and look after yourself.
Oh wow ok, was that a genetic thing that was discovered for you then? I was born with a heart murmur in a close place to my mitral valve as well but I think with the infection eating away at the valve they've assumed that it's severe enough for surgery. You'd think if you're taking medication for it then you're eligible to have his fixed surely? Like you say not long til Christmas so a welcome distraction for a few weeks. Thank you for your reply!
So sorry for all the distress you've been through. It wont help to hear another similar story of hardship so I sincerely hope your mental attitude will see you through and you'll get your surgery soon. Take care.
Trust me it certainly helps when people share their stories too, I felt very alone when I wrote my post and to understand other people are facing similar hardships it feels very much like a strength in numbers thing for me, as horrible as it is that other people are having procedures/appointments canceled too.
I am sorry to read this as you are so young. I had similar last year with my aortic valve replacement op. It was scheduled before Xmas but due to Covid and the lack of beds I was cancelled with no date given. Thankfully (but weirdly) I had a heart attack on 23rd December and was rushed in. I had my op on 8th January and then quite a long stay. It seems to get things done you have to be an emergency. My surgeon and his team had a priority list which I was on when things got easier - due to Covid they haven’t. I hope you get your op very soon. Take care
Thank you Kate, I hope I get my op soon too. It feels very much like they're just pushing you back until you become an emergency at the moment which isn't ideal at all. I'm glad you're on the other side of valve replacement op now, just hoping I can get sorted fairly quickly, but maybe without the heart attack first haha!
So sorry to hear that. ,it is not good enough,I know there are problems in the.NHS but while we just keep putting up with it they will not get organised.
Get in touch with PALS…Patient advice and liaison service, maybe they can help.
I am a retired Staff nurse so feel I have the right to criticise not the staff, but NHS management, it has not improved !
I am constantly battling to get my heart problems sorted, but I am older and I feel people like you should be prioritised. Good luck and a healthier 2022
Thank you, I have contacted PALS and basically copied and pasted my post from here into the email, they've asked for a few details so at least my story has been heard, whether or not it'll equate to anything I guess we'll find out.
I'm so sorry to hear this - you have had a rough time. I've been there with the cancellations too. Finally had my mitral valve replaced on 10 June this year. It was supposed to be 13 May, then they had an urgent case so pushed me on to 19 May (had already isolated for nearly 3 weeks by then).
I went in to hospital on 18 May, had all the meetings and prep, showered and ready the next morning, and then I waited and waited... finally at 3pm they said the first case of the day had got complicated and it was too late in the day to start mine - the surgeon was hugely apologetic and clearly upset at having to send me home. He said they were being told to do 2 surgeries per day to catch up from the winter backlog but he said it wasn't really practical when a lot of heart surgeries are several hours, and that they were having to cancel people far too often. (The surgeon also said that people who've been cancelled get put further up the priority list - awful that the situation has evolved this way, but that's where we are.)
I went home but was told to continue isolating. I didn't hear anything the next day about a new date so I made a nuisance of myself on the phone to the hospital because my 2 teenage daughters were really struggling with my continued isolation and they agreed to give me a date of 9 June so that I could have a few days out of isolation to spend the weekend not having to avoid my husband and daughters. Then they pushed it on again to 10 June.
So I repeated the 2 weeks isolation and all the Covid tests etc, and repeated all the prep. The whole time I was in hospital before the operation and nurses were talking about getting me ready, I just kept thinking it might not happen. I didn't really believe it was happening until they actually wheeled me into the anaesthetic room and started wiping my arms down for pre-meds etc - in a way that gave me less time to get nervous about the surgery because I was so nervous about being cancelled again!
It has been a long old wait - I was diagnosed with mitral valve prolapse aged 5, moderate leak diagnosed age 30, moderate to severe leak age 42, severe leak age 46, started to get symptoms age 50/51 and finally had the operation when I was nearly 52. But now, I feel better! My fitness isn't completely back to normal yet but I am massively improved from when my symptoms started and I was suffering so much fatigue and breathlessness. You will get there too - the waiting is one of the worst parts and I also felt like it would never happen. But it will, and then you will get past it and be able to get on with your life again.
Keep your eye on the goal. I know it's hard while you don't yet have another date, and you've had such a lot of time in hospital already. You've been through a lot. I'm sure you do this already, but if you are feeling at all worse, ring them and tell them, because it helps them work out their priority lists. But you will get through it. You will be offered cardiac rehab afterwards which is so helpful to get you fit again. Wishing you all the best.
Thank you for sharing your story, I feel very much similar to you when it feels now like I can't focus on the operation as much because I'll be too worried about having it canceled again, I think I'll be the same in not believing it to be happening until I'm falling asleep.
Cardiac rehab was mentioned to me and it sounds ideal for my situation, get me back into some normality and a bit of exercise where it's encouraged and not just forced for the sake of it.
Hoping I get this procedure soon as I just feel tired all the time, I work long hours and all I want to do is sleep and lay in bed, it's very depressing feeling like this which I'm compounds on my feelings too. I'll certainly be making a nuisance of myself to them, thank you again.
Im so sorry you have had all these problems it's very dispiriting. I had problems with cancellations but take heart(sorry) when you finally get your Mitral valve sorted you will feel so much better. I really didn't know how unwell I was until I had the operation. Good luck and God bless xx
Haha can't go wrong with a little dad joke in there, bit of humour keeps the spirits up! And yes I feel like I won't realise how bad I've felt for this long once I've had it done.
Thank you to everyone who's shown their support and stories, it's made me feel very welcome here and I don't feel as alone as I did when I heard the news initially.
I've got in touch with PALS as a couple of people here have mentioned so maybe I'll hear back from them soon.
Until then at least I have Christmas to focus time and energy on to, this waiting is the worst part, hoping to get some answers about when I'll expect to be seen now.
Hi Imo90
How frustrating for you. No wonder you are angry, sad and lots of other feeling too.
You’ve had a lot of replies here saying the same has happened to them. I can’t even comprehend how that feels. I had my AVR OHS in January this year. It was only diagnosed in 2020 . I was on the waiting list for 14 weeks when I started feeling much worse.
This forum was great. Someone said that I really had to tell them that I feel worse. Deterioration is serious and you need to be seen. I told my GP and the wheels were set in motion. Within a week I was in the Nuffield in Leeds having my surgery. I’m NHS 💙 not a private patient. They found a bed for me there and the surgeon came over from LGI to do the surgery. I owe them such a debt of gratitude.
So, if you feel you are deteriorating you must flag it up and be proactive. I’m sure you are anyway but I thought I’d share this with you. It was mid pandemic but they still got me in. I’m now feeling like a different person. Playing with my grandchildren and walking 10 mile hikes! There’s life in the old girl yet!
Keep positive. You are so young to be going through this but with youth on your side your recovery will be good and you will be strong again.
So I was in contact with the secretary and was reserved to having the surgery at some point in the new year, so didn't really expect much.
But I had a phone call yesterday from her and they've requested me in for surgery before Christmas.
So now I go into Hospital next Sunday for surgery on the Monday, so I'll spend Christmas in hospital, but I'll happily take that if it means getting fixed, never thought I'd be in a hospital over Christmas though so I'm quite interested to see what the atmosphere will be like when I'm there, obviously if it doesn't get cancelled again.
Lovely news, being in over Christmas as you say will be a very different Christmas but I would imagine they will make it very special.Let us all know how you are.
So glad you're having your surgery soon. I'm sure all the hospital staff will make sure you have a good Christmas. You'll feel well enough by then to enjoy the day, good luckxx
Fantastic news! What a great gift for Christmas. As Heed said, there will be many more Christmas’s to come where you’ll be feeling much better, won’t have the worry hanging over you and hopefully, Covid may be a distant memory. Keep us all posted. All the best
Ahh, Christmas in hospital, such a special event. You should be well on with your recovery by the big day, so able to join in with the festivities. Seriously though, it's good that you've got the date sorted. There'll be plenty of more Christmases to enjoy, so being in hospital for this one, isn't such a bad deal.
I had AVR on the 19th December and got released on Boxing Day. Xmas Day was quite decent, Santa came round with a prezzie, a can of Lager, Dinner wasnt half bad, my wife brought my 2 year old son in to visit, so all in alI a pleasant day. Unfortuntely, the year was 1994 before the world changed. 😂
Haha, that does sound pretty good, I have a feeling it might not be so festive but we'll see! Hoping by then I'll not far off going home so I can be recuperating at home and maybe be involved towards the end of the holiday period.
You now know what your X'mas present is.....getting your heart fixed !!!I had my 70th birthday in hospital, post op this year. I was so busy recovering that I didn't celebrate until some time after I got home. Good luck and lets hope you are in at x'mas.....
Hello everyone, another update from me, I had my surgery!
I had it on the 20th December, was at risk of being cancelled on the actual morning due to staff sickness but thankfully it wasn’t.
It’s been a tough few weeks but thankfully I’m home now and on the mend. I had to spend Christmas in hospital as you’d expect but it’s absolutely fine with me, no visitors so very tough for my family.
So unfortunately they were unable to repair my valve and had to replace it but it’s a small price to pay for perfect health so I’m not ungrateful at all. I unfortunately had to spend an extra week in hospital because when they took my damaged valve out they actually found some sort of bacteria on it and everyone went into panic mode thinking I may have endocarditis again with a brand new valve but thankfully countless blood tests later I was in the clear and it was deemed as a contaminant and nothing my side.
Thank you again for all your comments they’ve really helped, the pain at home is a little difficult to deal with but it’s not going to be forever so keeping spirits raised.
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