Some of you may know me already - I had a 2x CABG last Jan, aged 34. Well today is my 36th birthday! I am happy and healthy
The reason I am posting is that I am hopefully moving in to the world of cardio industry, I was previously in clinical nutrition and artifical feeding. I would like to use my own unique view point for good to increase the understanding from a more patient-focused approach. My job will be to work with surgeons to make sure that they are using the heart valves we are supplying correctly/fitted acurately etc. As you will know every mechanical valve is different, as is the patient it will be used with.
I have an interview on Wednesday and I wanted to have a few patient stories from you guys as you are an absolute WEALTH of information. I genuinely don't know where I would be without the lovely people I have met on here. If there is anything you can tell me about the below I would really appreciate it, I would really love some brownie points in my interview!!
Thank you so much, Rosie x
The positive bits and negative bits
The recovery side of things, how long, what were the complications, is anything on going?
Medication you are now on
If you went biological or mechanical/what your reasons were
Advice you would give someone who was going to have valve work done
How you have found having a TAVI or why you had a TAVI and not open heart surgery
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MarmiteB
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Hi marmite B Marmite my favourite thing by the way I had a aortic valve replaced by TAVI 10 weeks ago I had rheumatic fever as a child for years which left me with a heart murmer caused by the starting on that valve and was told when I was finally discharged fro the cardiac depth when I was 22 that I would ha ve problems in later life but have led a full life and had 3 children worked and nursed elderly relatives At 65 I had a echocardiogram
done and there was no problems but last year at 74 I had another done which showed severe aortic stenosis which I was told happened to a lot of people who had had rheumatic fever as a child ,bizzarely the scarred mitral valve looked fine I had no symptoms so was just going to be monitored but 3 months I blocked out after that I was permanently exhausted and out of breath so the surgeon ordered a test with the dye and from that he said I needed op sooner rather than later and I was suitable for a TAVI so I could have my choice I picked the TAVI as it was a less invasive option and a faster recovery time and at 75 I knew it would take me longer to recover from surgery TAVIof course is a tissue valve The operation was nowhere near as bad as I thought and I was surprised when he said it was finished .I was only in hospital 2 days .The first 3 weeks I didn't notice much difference but after that my energy returned I leaps and bounds till week 7 when I suddenly felt not right for a few days and ended up passing out and back in hospital They said it was quite common d a good sign the valve was working well but my blood pressure needed to work out where it should be so I was off blood pressure meds for 2 weeks and am now back on a new one. I also have had arthritis and fibromyalgia most of my life due to the rheumatic fever
My meds are now amlodipine, aspirin, omeprozole ,atorvastin and paracetamol
I would certainly reccomend the TAVI to anyone and asghry are now opening up TAVI to younger age groups I think it will become a lot more common in the future
Hope this is of some use to you Good luck and let us know how you get on in the interview
Marmite is also my fave thing, he is my big black labrador!
Thank you so much for your story, it was fascinating to read. It sent me on google journey to understand all about Rheumatic Fever and why it would lead you to need a heart valve replacment.
I had my first Biological Aortic Valve replacement at the age of 52 in 2014, this was after prolonged observation by Cardiologists over a 25 year period due to a bicuspid valve.
As I was reasonably fit, running 5k and 10k twice a week and playing 5 a side football once week with people half my age, recovery was quick. I was back running after 6 weeks, much to the horror of the rehab nurse. Although after my initial session with her I was allowed to build up my fitness back to where it had been before the operation and life went back to my normal routine.
Unfortunately, things changed in 2017 when I had a tooth removed by a Dentist who didn't prescribe prophylaxis antibiotics and 2 weeks later I became ill. Nothing was showing up on scans or blood tests and after 6 months I had deteriorated to the point where I could barely walk.
Having been poked, prodded and and scanned, both externally and internally until they had run out of ideas I was sent to have yet another upper abdominal scan which finally showed some sort of indication as to what was wrong. My Spleen was enlarged and the Radiologist told me it was most likely caused by a blood infection.
I looked up Dr Google and found that one of the causes of an enlarged Spleen is Bacterial Endocarditis. After speaking to my GP, I was sent to hospital where this was confirmed via blood cultures after 3 days. I was extremely lucky to survive.
Nothing much was left of my Aortic Valve and so a second valve replacement was required. 4 months after being in hospital I was released back into the community, recovery was much slower than previously due to the state of my health but slowly I made it back to work over a year after becoming ill.
3 months later, I became ill once again, this time I was driven directly to the hospital by the GP and Endocarditis was confirmed 3 days later although this time it was Fungal Endocarditis, if BE is rare then FE is off the scale. A further 3 months hospital treatment and I had recovered sufficiently to go home and "Enjoy whatever time I had left, however long that may be."
A year later I had a NSTEMI where a part of the infection still floating around caused a blockage. This was my second such incident, the first being when I was in hospital the first time when a part of the infection caused tissue death in my Spleen. I have been investigated for a TIA for the same reason.
Recently, I had a PCI procedure to close a gap around the Aortic Valve which had been caused by my episode of Fungal Endocarditis , this was after a wait of over 18 months due to recent global events. After a false start, a month later I was back in hospital had the procedure and was back home after 3 days.
Finally, after nearly 6 years things are getting back on track, although very unfit I am able to do more things every day and I hope to get back to jogging by the end of the year. A recent diagnosis of Type 2 Diabetes, probably a result of my inability to exercise, has been a bit of a irritation but nothing that is of concern.
I am on lifelong medication of Fluconazole as well as Atorvastatin, Ramipril, Lansoprazole, Aspirin and now Metformin.
I decided to have a biological valve as I had an active life and didn't want to have blood tests on a regular basis or take Warfarin.
My advice to someone would be to listen to your Cardiologist, but question anything you don't understand. The choice of valve is down to you although some Cardiologists may try to persuade you to have a certain type of valve. Take into account age, lifestyle and future compromises such as alcohol, exercise, DIY activities and so on.
One other bit of advice, when visiting the dentist after a procedure on the heart, insist on antibiotics prior to any invasive treatment, that includes a scale and polish, if they won't prescribe it, walk away and find another dentist who will. Unfortunately, antibiotics are a part of your invasive dental treatment from now on.
Apologies for the length of reply but you did ask!
Oh wow Mel, what a journey you have been on! Just really poor luck with getting such a nasty sounding blood infection leading to all sorts of trouble. I am really glad that you are getting back on your feet now and slowly recovering.
Do they think having a heart valve op in the first place contributed to such a nasty reaction to a blood infection/simple tooth removal or was it just rotten luck?
Endocarditis doesn't really cause a problem with a healthy natural valve. A valve replacement will put someone in a high risk bracket but provided all precautions are taken, such as antibiotics prior to invasive dental work, people should be ok, although good dental hygiene should also be the norm.
It is extremely rare but after the NICE guidelines change in 2008 regarding stopping prophylaxis antibiotics prior to invasive dental work for everyone, the amount of infections increased by an average of 35 new cases a month. This was not redressed until 2016, by which time hundreds of people had died needlessly.
It must be said that the chances of getting infected are very small, you could say it was rotten luck but for sake of 50p worth of antibiotics it really isn't worth taking the risk and certainly the Dentist should be aware of the dangers and prescribe antibiotics.
We all carry the bug in our mouths and generally the infection is dealt with by the bodies immune system but with a prosthetic valve there is no blood supply and as a result the infection can attach itself to the valve and thrive. After a while, the infection will destroy the valve as well as causing organ failure throughout the body. My liver couldn't cope and the Spleen became overloaded. The kidneys also struggled to function properly. At the time it felt like every organ in my body was talking it's turn in giving me a kicking from the inside.
Around 30% of people infected die as a result, age doesn't appear to be a major factor but the bodies ability to fight infection is. I know of a case where someone in their 30s who was fit and active but didn't have antibiotics from their dentist prior to a scale and polish and died.
If you get infected a second time the chances of survival are greatly reduced. I don't think I would be lucky a third time.
The after effects of treatment caused almost complete deafness in my left ear and about 50% reduction in my right ear. The continual observations and further treatment as well as chronic fatigue etc. has meant that I had to take ill health retirement at 59 and life expectancy is reduced.
The cost of my treatment is well over £300,000 and all of this could have been avoided for the sake of a sachet of antibiotics.
People still have trouble with Dentists refusing to give antibiotics.
I am really sorry to hear that you went through such an incredibly hard time, crikey, you have really been through the ringer. Your story should be used in case study as should countless others no doubt. It's really good advice to hear and understand about going to the dentist. Thank you so much for sharing your story. It's truly unfortunate to hear about the impact of endocarditis on individuals with prosthetic valves, and the increased risk associated with dental procedures.
The statistics you shared highlight the importance of taking precautions, such as antibiotics prior to invasive dental work, to minimize the risk of infection. It's alarming to think that the change in guidelines in 2008 resulted in a significant increase in infections, leading to needless deaths.
The fact that the infection can attach itself to the valve and cause organ failure throughout the body is truly devastating. I can only imagine how challenging it must have been for you to experience the effects on multiple organs. It's heartbreaking to hear about the lives lost due to such preventable circumstances.
Thank you again for sharing your story. It serves as an important reminder for everyone to prioritize their dental health and to advocate for appropriate precautions to avoid potentially life-threatening complications.
Positive,,,fabulous staff, wonderful surgeons. Negative…waiting to go to hospital
Recovery for me was 15 weeks. I felt a little better every two days. Two outbreaks of gout was the bad bits. Prolonged my recovery time by a few weeks.
Ongoing is impossible to know. I had a stroke three years beforeOHS. I have dementia three years later.
Medication maybe for other ailments.
I went biological as I was 72 years old. I made the surgeon decide, which he didn’t want to do.
Private hospital so I had a TAVi surgeon to also advise me. Gist was that a TAVi was possible to fail and so OHS was better option.
My advice is to look forward to getting your life back. Fabulous, wonderful experience. Sensationally brilliant staff and medics. Also do not look on Facebook etc. stick to BHF and NHS sites. I have fond memories of my time in hospital.
My op was observed by a small group of staff. They confirmed I had just weeks to live.
hi. I’ve had 2 ohs to be fitted with mechanical mitral valves within 4 months of each other. I was 50 and my heart problems were caused by rheumatic fever as a child. I don’t want to scare people but the first ohs was truly horrific due to very poor hospital care after the op and afterwards I got sepsis, C. difficile, had a stroke, got endocarditis and nearly died. It took months to discover the endocarditis although I was high risk. My last mitral valve was fitted 18 months ago and the damage caused to my heart through endocarditis has left me with heart failure. My surgeon was amazing but my inpatient hospital care was terrible and has left me terrified of ever being admitted again. Sorry to sound so negative but the first ohs and the resulting complications was something I wouldn’t wish on anybody.
hi I had a biological valve 18 months ago - I couldn’t have mechanical as I am allergic to Asprin . I’m on blood thinners but couldn’t tolerate warfarin . So the choice of valve
I had never been in hospital prior to my heart problems at 63 I was smug about my health no smoking drinking veggie diet I even had home births of two huge 10lb babies . So to suddenly require ohs was a huge shocker . I didn’t do sick !!! But I was totally crocked I couldn’t put my pjs on without gasping for breath . So a replacement valve was required . The actual surgery was a car crash but recovery amazing ! 3 months I was back to work feeling zingy !!!and life has gone from strength to strength .
I say a silent prayer for my valve everyday I am fit and well I may have to have the mitral replaced in a few years but it holds no fear - incredible medical marvels ! Replacement heart valves thank you !! I can never thank you enough !
(As a life long veggie I struggled with the biological valve - but my family and friends didn’t and I am and will forever be thankful . )
Hi! It's wonderful to hear about your positive recovery and how well you're doing after your heart surgery. It must have been quite a shock, but it's inspiring to see how you've embraced the experience and are grateful for the medical marvels that have improved your health. Keep staying strong and appreciating each day. Sending you best wishes and continued good health!
My name is Steve nearly 6 years ago I had a mechanical Aortic valve fitted after suffering heart failure and finally being investigated that I had in fact have had a Bi-cusp it aortic valve since birth.
Came as a surprise and was kept on medication for a few years until the valve was slowly getting worse.
Iam owner, labourer and dogs body in a Landscape Gardening business and slowly ground to a halt and closed my business.
I like to get things done and when I got that call from my cardiologist that they were to operate it was a relief mixed with hesitation and fear so suitcase in hand I went to hospit.
A mechanical valve was used due to my age and all is well after 6 years. The care I got from the Hospital was second to none. After surgery I woke and was amazed that I could breathe fully again.
I still take a lot of medication mainly for a diagnosed Atrial Fib. I’m back with my landscaping and obviously not doing to much heavy work.
It’s a daunting experience having such a big op but reassuring that there are many others that have been though the same.
I now support as much as I can the BHF and am more than happy to assist with any info I can.
If you are about to go for surgery it’s totally normal to feel apprehensive the benefits massively out weight the negatives.
I saw many people go into surgery grey and tired and come out like a spring flowers with colour back in there face.
I had my aortic valve replacement done last June, I’m 33 years old. I had bicuspid valve identified when I was 11 years old with very mild aortic stenosis. I sort of got lots to follow up on the NHS when I transitioned to adult services and was not reviewed with echo for a number of years- a move to London from Northern Ireland probably didn’t help with this! Anyway I’d had no restrictions as a child and really wasn’t aware as an adult that this was something that would ever deteriorate or require intervention- probably naively so. I became pregnant in April 2020 and during my standard booking appointment in London I was referred for an echo- much to my shock it showed moderate to severe aortic stenosis and I was told I would likely require surgery not too long after my pregnancy. I moved back to Northern Ireland shortly before I gave birth- aside from extra scans and foetal medicine appointments to check babies heart all went very smoothly. I booked a private cardiology appointment and echo around 6 months post birth and at that stage my aortic stenosis was considered severe- I was referred to the regional heart surgery mdt and thereafter placed on the list for urgent valve replacement surgery. Even with this I waited 8 months for a date for surgery. At the initial stages I was told that there was a possibility of repairing the valve but that in the event that they went in and couldn’t during the op I would have to decide on mechanical or biological valve. It wasn’t an easy choice as at my age the thought of lifelong anti-coagulants an d the fact this was contraindicated with having any further children was very hard. In the end I chose the mechanical valve- I didn’t like the thought of going through further open heart surgery in another 10 years or so- I was told given my age I would effectively burn out a biological valve very quickly. Also my son needs a healthy mum here for a long time more than he needs a sibling! I had the onyx valve fitted which I believe is one of the newer generation valve- I take warfarin and that’s all I take- I had a hard time at the start getting my INR up to target range- for the first three weeks post discharge tested at the local GP surgery every day and had to double up with clexane injections twice a day. Apart from that my recovery was pretty straight forward apart from managing an 18 month old but I had good help from family. The advice I would give is to think long term- I’m a big believer in innovation and developments in technology in healthcare- I think it’s pretty Amazing that I’ve basically a new lease of life hopefully for many decades and I barely think about it day to day. I can hear the ticking of the mechanical valve but I actually find this quite comforting just like a ticking watch!
Hey WW! You did indeed have a new generation of valves, the On-X! It's a unique valve because it means you can manage with a lower INR compared to other patients with mechanical valve. Good for you How are you getting on with your warfarin now?
Hi MarmiteB, firstly happy birthday. I had an aortic valve replaced by transapical TAVI in 2020. I already had a CABG 17 years earlier and the surgeon was reluctant to do a second. I have severe PAD and so groinal access was not an option. There are dangers such as disruption of the heart rhythm, requiring a pacemaker, but my op was fine. Post op I had 10 days of feeling I had broken ribs, but the rest of the recovery was fast compared to OHS. I was 69 and my arteries are in such a poor condition because I inherited FH from my mother who died as a result, aged 58. The NHS has given me 20 extra years and hopefully quite few more. Good luck your new career.
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surgery question for anyone who has had mini-sternotomy/ open heart surgery. 
So I'm having Mitral Valve surgery...
bleeding internally with warfarin and having a mechanical heart valve 
Leaking Heart Valve anyone had treatment for it!
Has anyone had a heart valve replacement?
