Synthetic mytral valve

[Dimelza66]

Hello, Soon I will have mytral valve replacement. I'm 56 female and lead a very active life. My concern is not so much getting back to fitness after surgery but more how much warfarin really affects day to day life. Also I was wondering, are there still no other alternatives to taking warfarin when one has a synthetic mytral valve?

[Blackcatsooty]

Dear Dimelza

Welcome on board.

I just wonder if you have your terminology the wrong way round. As I understand it, mechanical valves need warfarin and the synthetic valves do not.

I have an aortic , synthetic valve so I don’t need any warfarin.

I was given the option to have a mechanical, which would mean warfarin.

The synthetic valve doesn’t last forever. I was 72 so I went for synthetic. Four years on, it has been a dream. I don’t know it’s even there. But at just 56 I doubt that a synthetic would last your lifetime. Fast improvements are being made. So you perhaps need to listen to your surgeons advice. He will be up to date whereas I am not.

it is important to follow the rehab advice. It is many weeks to recover. Up to about 12 weeks.

It’s a marvellous op that saved my life.

Best wishes

sooty

[DodgyTickerMum]

Hi, I had my a mechanical valve fitted in June last year. I was hoping for a repair but the surgeons said the repair wouldn’t withstand my blood pressure - so woke up to the news that they’d had to replace it.

Unfortunately, I have had a lot of issues with my I.N.R and it’s still not that stable now, 9 months down the line. The best advice I have, is to purchase a Coaguchek machine - so you can carry out your own blood tests when necessary. You then just phone the anti-coagulation clinic with your result and they tell you what Warfarin dose to take that day / week / month - wherever you’re at with it.

I set alarms on my phone for my various medications - as it is imperative that you don’t miss a dose - (and my brain fog post op is still shocking!) It does become like second nature though.

The clinic nurses said you can eat what you like (within reason) and they will dose around it. So, I do avoid broccoli together with cranberries and grapefruit both of which are a definite no-no - sadly. But if you were to eat a roast, I was advised to only have a small portion of greens or cauliflower etc - as this will have an impact on your next blood test. It is super sensitive. I don’t drink - but I think you have to be careful there too.

I was told by my Surgeon that there are no other thinners licensed for use with mechanical valves in the U.K. He advised the effects of Warfarin can be swiftly reversed if need be. That is their reasoning behind it.

Good luck with your op. I hope it all goes well for you and you’re soon on the road to a full recovery. All the best. ❤️‍🩹

[Dimelza66 in reply to DodgyTickerMum]

Thank you for your encouragement and positivity

[Hanibil]

Hi at 56 I certainly wouldn’t be going for a synthetic valve, they last around ten years, who wants to go through the op again no thanks. I have been taking warfarin since 2005 hasn’t really affected my life at all.if you get a home monitor it will save you hospital visits. I go twice a year.

[Dimelza66 in reply to Hanibil]

👍🏽 Great advice thanks

[santino44]

Correct me if I am wrong and in agreement with Blackcatsooty blood thinners required with mechanical AV while this is not the case with synthetic valve while it will last many more years before replacement required,

[Still_Breathing]

It's is literally taking a tablet daily and getting an INR check at a frequency upto 3 months.As long as you are consistent with what you eat and drink, your INR remains steady although everyone is different.

[Wingnutty in reply to Still_Breathing]

It can be a lot more complicated than that Still_Breathing. I wrote a document for another forum that I am no longer in contact with, about my own harrowing experience of a mechanical valve. I will paste it below, but it is quite long, apologies for that.

A Personal Experience of Nose Bleeds while on Warfarin

Background: 61 year old Male who had a quadruple bypass and aortic valve replacement 5 years earlier on warfarin therapy for life because of the valve . INR range 2.5-3.5, target 3.0.

I had many nose bleeds after starting warfarin, at least weekly. I had always managed to control them with tissue rammed tightly up my nose. Pinching the nose just below the bone in the bridge of the nose is the standard medical advice, but that never stopped the nose bleeds in my case. I was of the opinion that the bleeds were coming from a place higher up the nasal passage than the start of the bone and so pressure below that point had no effect.

On one occasion, a couple of years after the operation, I couldn’t stop the nose bleed and after a couple of hours of trying, I had to go to the emergency department at my local hospital in the UK. I had to wait about an hour to be seen and by that time, the bleed had stopped by itself, so I was sent home, but an INR check was made and it was much higher than my therapeutic range.

At a subsequent outpatient appointment, they decided on no further action apart from the use of a nasal cream in the nose called Naseptin.

A few years later and I had a similar episode, but it seemed even worse this time. Again I went to the Emergency department and because of the rate of blood loss, I was seen quite quickly by a junior doctor. He decided to use a device known as a ‘rapid rhino’ which looks a bit like a tampon but has a tube coming out of it which you can connect to a syringe and then inflate it with air to put pressure on the wound. This device is very uncomfortable and they do cause a lot of collateral damage to the tissue inside of the nostril, but its use was necessary to save my life. The device failed to stop the flow and the blood was now coming down my good nostril because he had blocked off the affected one. The doctor then said he wanted to put another rapid rhino up my good nostril because that would cause pressure to build up inside my nose and stop the bleed wherever it was. I told him that I thought it was very unlikely to be successful, but he still wanted to try it. He tried that and stopped blood coming down both nostrils, but now it was just flowing backwards and down my throat. At that point, he went to get a more senior doctor.

The more senior doctor took the rapid rhino out of the affected nostril and replaced it and managed to tease it a bit higher up than the previous doctor. He had to use a lot of pressure in the rapid rhino, but it did stop the bleeding. When he took the rapid rhino out of the good nostril, that started bleeding because of the damage done by the device, so he had to put that one back in and re-inflate it.

I was admitted to a ward and told to stop taking warfarin for two days. My INR was 4.9 for reasons unknown, but I was not self testing at the time and if your INR is seen to be relatively stable in the UK, the clinic will let you go for anything up to 12 weeks without testing. It had been about 5 weeks since my last test when the bleed happened. The plan was to let my INR drop by not taking warfarin, then to try and cauterise the wound. The next day, they took the pressure out of the rapid rhinos to see if the bleed would continue, but it did, so they had to re-inflate them again.

After two days without warfarin, my INR had dropped to 1.7, and they decided to try and cauterise the wound while the blood was still flowing. This failed and an operation was planned for that evening. The operation was a spheno-palatine artery ligation (SPA ligation). The spheno-palatine

artery supplies blood to the nose and is a branch from the carotid artery in the neck. Ligation, just means tying off the artery. I was told if this failed, they would have to tie off the SPA at the neck end and this would leave a scar on the side of my neck. The operation went ahead and the rapid rhinos were out, but my nose was still bleeding slowly.

I was taken back to the ward and restarted warfarin and started Dalteparin injections for bridging which I learned to do myself so that I could leave the following day and continue until my INR came back up within range. I left the hospital the next day but my nose was still oozing blood slowly. A couple of days later, I had an INR check at the clinic and it was still below range at 1.8.

The next day, the oozing from my nose got gradually worse and worse until it was finally as bad as when it first started a week earlier. I had to go back to the emergency department and insisted on seeing the more senior doctor straight away, after explaining about my previous experience. I saw the same doctor I had seen a week ago. He again used a rapid rhino to stop the bleed and I was taken off warfarin and admitted for a further 4 days. I had no more surgery, but at least one more attempt at cauterisation which failed.

I eventually saw the head of the ENT department and he explained that what had probably happened is that the combination of nose bleed, Dalteparin, aspirin and my INR starting to rise again through the warfarin therapy had restarted the bleed. His suggestion was to stay off the warfarin until the bleed stopped completely which eventually led to being on the Dalteparin injections for almost 6 weeks, but it was worth it. During that time, I was told to stay as calm as possible and do no exercise as this could increase the chance of a bleed again.

8 or 10 weeks after leaving the hospital I started going back to the gym where I used to jog about 2.5km on a treadmill, but I found that I could no longer do that and my aerobic capacity was severely reduced and hasn’t recovered many years later.

I believe there were some serious mistakes made in my treatment by the UK NHS , in particular by the junior doctor using a rapid rhino in the unaffected nostril and sending me home with a bleeding nose and telling me to restart warfarin straight away. Having said that, if it wasn’t for them I would not be in a position to write this document or do anything else and I am sincerely grateful to them for saving my life.

I also believe that if I had been tested more regularly, the situation could have been avoided, so I have now purchased a Coaguchek tester and test myself at least once every 2 weeks.

[Still_Breathing in reply to Wingnutty]

Yeah read my last remark .....

[road2ruin]

I think you all have your terms mixed up. The valves are either mechanical (synthetic is the same thing) or biological (pig or cow tissue generally) Synthetic means made from artificial materials. Anyway, I have been on warfarin for 5 years, I am 55. I did have issues initially keeping my INR stable, but now it's a breeze. I do have a coaguchek meter and use it in between appointments and I now go to the GP every 8 weeks. I alter my own dose if my INR creeps up or down. With regards to avoiding foods, I don't. Just be sensible. I love broccoli, sprouts, etc. All I do is just have a little when they are on the table. It's only a one off and warfarin is not that sensitive.

I suspect stress affects your INR more than what you do or don't eat.

Good luck.

[Mitchum]

Good morning Dimelza. I have replied to many posts regarding warfarin on this site as I have a mechanical mitral valve and taken it for almost 22 years! Please try to read them as I have tried to put into perspective the (reputed) difficulty of balanced INR. Once you get the hang of it you can live normally. I have my own Coaguchek machine and basically adjust myself. You can eat and drink almost the same as now but need to not make big dietary changes. This is important as there are certain foods that interact with warfarin which is not a great problem if your dose is tailored to this. You can PM me if you have any specific questions but in the meantime, try not to worry and look upon it as a positive as your life will be enhanced! All the best.

[Mitchum in reply to Mitchum]

I meant to add that it's unlikely that you will receive an organic valve due to your age!

[Glenys147]

Hi dimelza. I had been on wayfaring since my 30/40s with no problems following diagnosis of mitral stenosis but hated getting my INR tested . Every thing fine until I had lung operation and INR could not be stabelized with warfarin dose being changed everyweek Eventually I was advised that I needed both valves replaced and was given the choice of mechanical or biological valves

Mechanical would have meant warfarin for the rest of my life but biological valves meant one tablet of edoxaban per day and no testing and could eat what I wanted. I opted for biological valves and at 70 had the operation and have had no problems. If I want to drink I can and eat what I like. No INR testing every week and no more yellow books! I'm into my 6th year with my new valves and wouldn't change a thing. Would love to get my BP down but that's another issue.

[Darkshades]

hi

As far as I’m aware if you have a synthetic valve, no warfarin is required … with a mechanical valve you do and also the possibility of hearing the mechanical valve open and shut - the Warfarin is a life long medication

A synthetic valve may possibly need replacing at maybe 10-15-20+ years … so depending on your age maybe a decider of what type of valve you have

[Coper10]

I am only familiar with the terms mechanical or biological, where valves are concerned (see road2ruin's post above). I had a mechanical valve aged 52 and so take warfarin as there is no other option for mechanical valves. Initially it took a couple of months for my INR to stabilise. Since then, my need for INR checks is usually between 50-70 days. The only issue I had was when I had to come off it for a planned operation and it took several weeks to become stable again when restarting. Since then, no issues. I don't find it impacts greatly on my life, diet wise I try to be fairly consistent with the amount of green veg I eat and avoid cranberries and grapefruit. I did not want to go through such a major operation a second time so the mechanical valve was right for me.