My Experience of Heart Valve Replacement

[bsa_b31]

I had a bicuspid aortic valve and 'associated aortopathy' (i.e., thin-walled aortic arch), this being a familial defect. Both my paternal grandfather and my father died from aortic rupture, and my 5-years elder brother nearly died from it but happened to collapse near a hospital. Still, he was without circulation for about 25 mins, and ended up in a coma for a couple of months.

In 1995, I suffered from sepsis, which took me pretty close to the point of death while various doctors fussed-about uselessly. Then a wonderful consultant came along and said 'Give this man IV Vancomycin immediately', whereupon I started to recover rapidly. What I realised at that point was that the pressure in my gum beneath a particular tooth had changed, i.e., the sepsis was caused by a dental infection. This infection was Penicillin resistant, i.e., Gram-negative.

After the sepsis debacle, I didn't even lose the offending tooth; but actually that was probably not a good thing. In the 1930s and 40s (pre NHS), it was considered a fantastic gesture to give someone the money to have all of their teeth removed and replaced by a set of dentures. It seems mad now, but it would have resulted in a huge increase in life expectancy. I had a lot of root canal fillings after the near-lethal abscess, often involving the use of Metronidazole to control the associated infection, but some of them caused a crack to run down the tooth to the root, permitting a constant low-level influx of gram negative bacteria. Such bacteria eat heart valves!

By about 2010 (age 58) I was suffering from angina. It took a while to get me to admit there was a problem and have all of the scans done; and I was found to have a severely regurgitating aortic valve and a highly distended aortic arch. A heart valve replacement and aortic reconstruction was deemed necessary, subject to the precondition that I must have a scanning dental X-ray and a complete removal of anything remotely suspect. This is, of course, to say that heart surgeons know all about the lethality of bad teeth, but general knowledge of the association is otherwise vague. I had the rest of my teeth removed, except for a couple of healthy ones at the top used to anchor a denture, and a couple likewise at the bottom used for a bridge. I have enjoyed a glorious freedom from dental problems ever since.

I underwent the operation for aortic valve replacement at Derriford Hospital, Plymouth, in Nov 2012 (aged 60). I was fitted with a St Jude bi-leaflet valve and Dacron aortic arch. One coronary bypass was performed, using a vein from my leg; but I was told that my coronary arteries were somewhat convoluted but not obstructed, so they didn't bother to do any more. One complication I had later was that my immune system took exception to the cut ends of the stainless steel wires used to tie my sternum back together at the end of the op. This resulted in a huge cyst full of white blood cells that kept refilling every time it was cut open and drained. In the end, some months after my sternum had fused back together, I had another operation to remove the wires. Musicians and skilled craftsmen (no gender specificity intended) should also note that the process of jacking the rib cage open for the operation can cause some damage to the nerves controlling the hands. My manual dexterity took several months to come back fully.

I am a scientist and experimentalist, specialising in a highly mathematical discipline (electromagnetics). One of my great worries prior to the op was therefore whether I might suffer from brain damage from having my body cooled to 25 deg C and deprived of oxygen for 25 mins while being connected to a heart-lung machine. When I came 'round in the ICU afterwards, after squeezing my wife's hand to show I recognised her and was conscious, I ran through some mathematical proofs in my head and realised everything was OK. I started with Al Quarismi's general solution for quadratic equations from the Al Jabra (where else would you begin?). As it turned out, in the period after the op, when nobody expected me to do anything much because I was so frail, I did some of my best work and solved some long-standing scientific problems.

There's more to my story, particularly because I've recently become epileptic (old age and the need to adjust medication probably), but I'll put that on the epilepsy forum.

Also, I should note that, while the heart valve replacement cured my angina, my cardiac output is not as great as that of a normal person and I get out of breath. For a few years, the solution was to take exercise slowly and drive once I was well enough to get behind the wheel of a car. Epilepsy results in a driving ban however, and I live in the countryside up a steep hill. The solution in my case has been to get into e-biking, and I have had a lot of fun building and improving such bikes. It blows my cover of course, but my experiments and findings are given on my personal website: g3ynh.info/workshop/e-bike....

[Amikatari]

Hi bsa_b31, welcome to this friendly group! Wow, you've had to have a great deal of work done, and your extensive knowledge of science probably made the whole thing even more frightening? I was born with a bicuspid aortic valve but had no idea until this year. I had it replaced through open heart surgery too, 4 months ago, and I had no idea that the brain gets deprived of oxygen for 25 minutes or that they have to cool your body to 25 degrees. To be honest, I didn't even want to know details like that, as I'd already spent 6 weeks in hospital being treated for endocarditis and the operation was essential at that point to prevent me dying. I, too, was on the point of death before they took me seriously and put me on IV antibiotics (they thought I was just anxious and imagining I was ill!), and so I understand the frustration of having doctors fussing around uselessly.

Is the St Jude's valve a tissue or artificial valve? I've got an On-X artificial one, I'm on warfarin and aspirin for life, but I opted for it because I'm 44 and so would definitely need replacements in future if I went for a tissue one.

You sound very pragmatic and courageous about your health issues. I'm sorry to hear you had complications after surgery and that you've developed epilepsy, but I'm really glad to see that the surgery clearly didn't affect your intelligence, and that you've found a creative solution to the driving ban.

[bsa_b31 in reply to Amikatari]

Hi Amikatari

It sounds as though your valve was attacked by penicillin resistant bacteria too. Endocarditis is a term used in the description of what happened to me also, and mouth bacteria are particularly implicated.

The St Jude is an artificial valve and can be expected to last for a long time. It is however noisy, and if I open my mouth with my airway open, it can be heard by others easily. I don't mind that at all however, and it means I don't have to do anything if I want to monitor my pulse rate. Tissue valves were discussed, but I really didn't fancy the idea of the valve wearing out.

I am, of course, also on Warfarin for life because of the St Jude. I am however, also allowed to monitor my own INR using a Roche CoaguChek and adjust my Warfarin dosage accordingly. This is important to me because minor dietary and medication changes can affect it, and going to see the nurse once a week was anyway hopeless for maintaining theraputic range (2 - 3). I keep detailed spreadsheet accounts of everything medical however, and give relevant graphs to my GP from time to time. It is natural for me to do stuff like that; but using spreadsheets isn't difficult to learn, and convincing your carers of your competence in these matters gives additional freedom.

I don't know about 'courageous'. I'm a bit weird I guess. I was scared before I went into hospital for the original surgery, but then I ended-up having lengthy conversations about medical research with the people there, and my lasting impression is that my time there was enjoyable and fascinating. It also saved me from certain death, which is a definite bonus. Some things went wrong, but most of it went right, and the overall result was very positive. So, I would say, pay attention and ask questions about everything that happens to you. You, after all, are in the best position to keep an eye on what is going on and request action if it is needed.

One consequence of heart surgery is that my heartbeat is now fairly erratic. I think I might have a full or partial left bundle-branch block (LBBB). I'm turning into a reptile, with two separate hearts. This bothered me after everything else had adjusted itself, because I thought that I might need a pacemaker. Sometimes I do experiments involving strong electromagnetic fields, and pacemakers don't like that. I got checked out however and the people who did the ECG were amusingly pragmatic: "Your heart doesn't seem to stop for particularly long periods, so don't worry about it."

I'm now also allowed to control my own epilepsy medication (Sodium Valproate). I have my driving license back now (it took 15.5 months in all), and even the DVLA are happy with that after correspondence with relevant medical personnel and my volunteering permission for them to access my medical records.

[Maydayuk in reply to bsa_b31]

Hi, I'm just wondering if you can give me some advice. I have a bicuspid valve with Ar and As. I have l bbb, I have found in the past year I'm progressively getting more fatigued. I have just received results from a mir I had end of sep. I had already had my annual echo but the cardiologist wanted some different measurement to see if my valve needs replacing sooner rather tham later. The letter says I now have associated aortopathy, dimensions of only 32mm. I don't know what this means. The fact says only... Is this good or bad. I looked up the word aortopathy, it says disease of the aorta. Is this why I feel worse. Were you ever given measurements for your aorta. I have contacted my doc for info. I don't really want to bother them with this covid going on. My cardiologist wants a face to face in March. My heads saying it can't be serious because my appointment isn't till March. I noticed you had the same or similar defects. I just wondered what he means. Thankyou in advance

[Maydayuk]

Thankyou for your advice.

[Pollypuss]

Have enormous sympathy for you and what you have been through. Had I known beforehand about the sawing open of the sternum and the problems associated with it I would by now be a trembling wreck. Instead I decided not to even read up about any of the possible side effects of my triple bypass - that is the only way I have managed to get back to near normal and continue playing tennis at 78. I don’t think my memory is as good as it was but it’s slowly returning. I went through a phase when every unusual symptom must be serious and I really had to sort myself out . I’m sure for you it is different being a scientist and a need to know the facts. Interesting though what you mentioned about the your tooth and sepsis. My son had sepsis twice last year after a bladder examination and I maintained he should have had an umbrella of antibiotics but was refused. It was only when visiting him in hospital the second time that his specialist said I was right. But hay ho who am I - only someone who works on instinct.

[Mikedabike]

Thank you for your in depth introduction, and welcome to what can be very useful site. From a very selfish point of view I just wanted to thank you for the link to your superb and detailed e-bike article. I am 62 with a mechanical St Jude aortic valve and hemiarch graft. At the moment I am still building up my stamina and strength to tackle my local Derbyshire hills which I love. I do expect in time to start to lose my fitness as I age more, and already with the developments in e-bikes I can see the attraction as I get older. Once again, thank you.

[Realworldresident]

Hi bsa_b31 hoping this message finds you well. Who were your surgeons at Derriford?

[bsa_b31 in reply to Realworldresident]

The operation was performed by James Kuo and his team. All involved in my treatment and care were also excellent. The year was 2012 of course, many people will have moved on, but the department is renowned for its high standards.

[Realworldresident]

Many thanks for the reply. I need AVR and ascending aorta replacement and will also have James Kuo along with Sir Malcolm Dalrymple-Hay. I hope and believe they have an excellent reputation. once again many thanks.