Mechanical heart valve

[hihannula]

Hi there Does anyone on this site have a mechanical heart valve, and if so has it calcified? Mine has and I can’t find an answer as to wether or not I can have it replaced before a piece of the calcification breaks off and causes a stroke or heart attack. The doctors haven’t much to say! I feel sometimes they are just waiting for my time to be up because they don’t seem to have a whole lot to say. Most days I feel like I’m a bomb ready to go off I’m so scared with all these bizarre symptoms. Thanks for reading.

[Groovy]

My brother and my dad both have mechanical valves. Don’t let the doctors fob you off, keep on at them until you get answers and feel happy. Surely something can be done. Where are you? My brother and dad had theirs done in London and the hospitals get back to them very quickly when they have questions x

[hihannula in reply to Groovy]

I live in Canada. Our health system used to be stellar up until 12-15 years ago. Over the years it has slowly crumbled and now it is months even up to a year to get an MRI that took a fax or phone call to get set up the following day. If you don't already have a general practitioner, the likelihood of getting one is slim, and if you are being interviewed by a potential GP they usually tell you they actually are at their maximum and can't take you on once they hear what ails you. Emergency room visits are 7-15 hour waits and for the conditions we have, they usually have never heard of them or they haven't a clue what to if they did. After the long wait you get sent home and told to call your specialist in the morning. I called asking about my MRI and was told not to hear anything until well into the new year. It's the same story for most of us and it is a sad state of affairs.

It is really nice to hear your Dad and Brother have a great team of Cardiologists.

Thanks Groovy for reading my rant.

Cheers

Holly

[Jillymo]

You and me both. 💣 I know exactly how you feel. I was diagnosed with congested heart failure on the 22nd of July - as yet I have not had a referral to a reputable cardiologist in antiphospholipid or received and medication !

Everything is a constant battle and I expect like you sick of the ignorance of the disease from consultants that are putting our lives at risk. 😡

I do hope you get sorted. 😘

[hihannula in reply to Jillymo]

I am so sorry to hear you've been diagnosed with CHF! It is criminal you have not been referred to a cardiologist. That is terribly wrong, and as if we aren't sick, tired and afraid enough, we have to fight battle after battle to get proper care and to be heard.

Like you said, the ignorance of this disease certainly is putting our lives at risk and some have lost the battle because of it. I will do my best to try and sort things out, but is tough when your concerns seem to fall on deaf ears.

All the best getting a cardiologist and be sure to read everything on any drugs they want you to take. Believe me the so called cures can be worst than the CHF. That's another story for another day!

Hugs Holly xx

[GinaD]

No practical advice from me, but, while some cardiologists have wanted to treat my afib with surgery, others have opted for postponing surgery as long as possible due to my fairly high serum calcium levels.

[hihannula in reply to GinaD]

Hi GinaD

Do they know why you have high serum calcium levels?. Have they checked all your thyroids. My sister with MS has high serum calcium levels as well and they are presently doing different testing including all her thyroids. Good luck with getting those levels down. Cheers Holly

[GinaD in reply to hihannula]

Thyroid is fine, so...?

[GinaD in reply to hihannula]

One theory is compensation for low magnesium. Now taking Mg. We’ll see.

[hihannula in reply to GinaD]

I sure hope that works for you. If taken 20 minutes before bed you’ll sleep like a log. I take it most nights and wow I get the best zzzz’s. Good luck Gina

Cheers

Holly

[Kerlampert]

Aloha...yes, I have a mechanical aortic valve since 2014. I haven't had any problems, but I have read about patients who get calcification and are able to have it re-done. The site is Adam Pick's heart valve blog. I'll try to figure out how to send you a link.

Kerstin

[hihannula in reply to Kerlampert]

thanks Kerstin I'll look for the the link. I feel a little hope. Cheers Holly

[MaryF Administrator]

Hi, you must write to the team and insist on seeing them regarding this, the team who carried out the surgery, if not getting anywhere get the email address of the PA to the main specialist and write to that email address marked for the attention of the main consultant. I enclose this interesting paper for your to read. frontiersin.org/articles/10...

I would also copy your GP into t the email.

Mary F

[hihannula in reply to MaryF]

Hi Mary Thank you so much for the article I've printed it off and it is very interesting I'm going to re read tomorrow. I don't live in the UK. I live in Canada. My original cardiologist retired quite a few years ago. I've never been assigned another since. I've been seeing an internist over the last year, but he doesn't know either if mechanical valves can be replaced once they are heavily calcified. I asked my primary Dr, he doesn't know so I thought I'd come to the APS site and I'm getting good stuff here. Thanks again

Have a good one Mary!

Cheers

Holly

[MaryF Administrator in reply to hihannula]

Do have a look on our charity website, which has two specialists, listed in Canada, I really hope you can make contact and move things on a bit, sending you best wishes. MaryF

[hihannula in reply to MaryF]

Thank you Mary. I've just checked and Toronto is the closest.. It's a little over 3 hour drive and flying is 50 minutes and would be best but not with pulmonary hypertension. There may be a long wait and I'd need my Doctor to refer me. I will do my best. Thank you for this information. Greatly appreciated.

Cheers Holly

[Kerlampert]

Ok, I found the other reference...look at

HeartValveSurgery.com

In the September issue there is a woman who has had 5 valve surgeries!

Regards,

Kerstin

[hihannula in reply to Kerlampert]

Thank you. I'll check on that. All the best. Holly

[Wittycjt in reply to Kerlampert]

Well this just sucks the initial surgery was frightening enough i cant imagine doing it five times...ugh. Holly, who told you it was calcified- how did you find this out? I had a repair, not a replacement and think i am doing fine. Curious now?

[hihannula in reply to Wittycjt]

Hi Wittycjt

I found out 1 year ago when my new Dr decided to do a full work up on me. From simple blood work to a heart and chest scan, EEG, ECG. Etc... The heart scan revealed I was densely calcified including my heart valve. The Dr strongly suggested stents for the heavily blocked arteries but nothing for getting that cement off my valve. I refuse the stents. They aren’t going to fix my heart!! So I’m a ticking time bomb “Dr’s words, not mine” but I use that phrase now myself! That’s how I found out about the Agasthon Score. Mine was 800 400-450 is considered a very dangerous score for heart attacks or stoking. You should google pig/cow versus mechanical valves and how they calcify!! Also many articles on warfarin is a culprit for causing calcification in the body. Warfarin blocks the K vitamin so any calcium we ingest doesn’t know where to go, so it attaches itself to our soft tissue which turns to stone! Also with no K, weaker bones...hence osteoporosis! In that case if the valve is soft tissue I would imagine you could calcify as well.

All hit or miss with these illness and drug reactions. I try to take it hour by hour and not to fret too much but still frightening! Going for head MRI tonight at 10:00 pm. I’m pretty brain dead at the time of the night! I hope it’s all good!🤞🤞

Take Care

Holly

[Wittycjt in reply to hihannula]

I had a repair so it is my own tissue and my cardiologist checks my echo at least yearly and bloodwork is fine. I take calcium as prescribed for previous osteopenia which has now reversed. I no longer am on warfarin for over a year now- i take lovenox injections every twelve hours- like you I was originally concerned about the vit k intake being crappy too and possibly causing severe osteopenia leading to osteoporosis with the bone loss plus i worried about my INR all of the time. If you look on my post history i think I posted about it at one time

[hihannula in reply to Wittycjt]

I am so glad to hear they were able to repair your valve. I wasn’t so lucky. It’s great you don’t have to take warfarin as well. That drug is killing me in more ways than one. I’m getting so fed up with all of this as I get older and more fatigued. I know we all go through stages of giving up, but I think it’s normal to want it all to stop or at least get a break once in awhile.

I wish I could take a different blood thinner but because my valve is titanium I have no choice but warfarin. Otherwise If I just had APS i’d be on something less complicated. Keep taking good care of yourself! Cheers Holly.

PS Can you take bit k supplements with your blood thinner. I can’t so all the supplements for healthy bones have k.

Cheers Holly

[hihannula in reply to Wittycjt]

Just in case I’m confused in thinking you think I’m the one who hade 5 valve surges, it wasn’t me, it’s an article sent to me by Kelly. I think!🤔

[Ageingfemale]

OMG!! I had mitral valve replaced on 2012. I had no idea it could also calcify!! It was before APS was diagnosed. But after the operation which went well, they couldn’t wake me up and I was in a coma for 4weeks!! They think now it may have been catastrophic APS. At the time they told the family I was possibly brain dead and would never wake up!! You must contact the heart surgeon who originally operated and get them to see you. Take care and thank you for informing me!!

[hihannula in reply to Ageingfemale]

Hi Ageingfemale. I replied to you but not under your name. I think you'll be able to find in in the threads. Cheers Holly

[Ageingfemale in reply to hihannula]

Hiya. Yes I found it. I have an annual echocardiogram, so far they say valve is fine. Although the aortic valve is now not very happy. I too am having weird symptoms with my brain and have an appointment now to see a neurologist at Guys.....in January next year. !!! I know I have APS in the brain, I have had several tia’s and mri showed one was in fact a stroke. But my gp is now wondering if, in fact, some of the tia’s are epileptic episodes. I now have to laugh whenever I see a consultant as they always seem to introduce something new! I saw the Lipid consultant last week, he’s been checking my cholesterol. He had a perusal of the other blood tests he ordered and said they were all more or less within parameters. Then he said one was very high, ooh which one says I. ?? The one that says I’m nearly diabetic!!!! I just had to come away chuckling to myself, it’s unbelievable really. Like you say, ticking time bomb 💣💣💣or knife edge, and my balance is very wobbly🤣🤣x

[hihannula in reply to Ageingfemale]

I know what you're saying. I almost feel sorry for these Doctors. They must be overwhelmed by the barrage of symptoms they are presented with on a daily basis. Same name for this syndrome, but different symptoms for each individual. I'm sure that's why some Doctors appear to not care, or they burn out and throw their arms up in the air.. Good luck with your neurologist once you see him. Cheers, Holly

[hihannula]

Sorry to hear about your scare that must of been horrible for your family given that news I'm very happy to hear you are good now and still with us.

Unfortunately these valves do have a tendency to calcify. The heart Doctor and all of my other specialists are very aware of the massive calcification in my entire body including my heart valve. I've had my valve scanned twice in the last 2 years and it continues to calcify and my fear is there will be so much one day the flaps will not open or close, or a piece of calcification will break away to my heart. I can't get an answer so I came to this site hoping to find an answer. I feel like a ticking time bomb. Take Care of yourself too!

Cheers Holly

[Holley]

I too have a mechanical mitral valve. First attempt was December 2005. I say first attempt due to the fact that while insterting the line for anesthesia, I got nicked in the carotid artery & developed a hematoma that had to be evacuated by a vascular team. During the surgery, it was noted that my blood was acting strange. Hematology was brought in for a consult. I got diagnosed with APS (family history of a plethora of auto-immune diseases). I was the first patient in the history of the hospital, apparently, with this combination. Heart surgery was re-scheduled for July 2006. It went as planned. Like Ageing Female, I didn't know they can calcify!! Will have to ask my cardiologist. I go every 6 months for an echocardiogram to check my valve. I downloaded the article Mary posted. I do hope you can get a scan & find someone who can give you some answers. I had two strokes in the past year: one caused by a clot, the second by a bleed. To treat one makes the other worse. I too feel like a ticking time bomb.

Holley

[hihannula in reply to Holley]

It was shocking to find out my valve was heavily calcified. I'm sure the lack of Vitk2 doesn't help because of the warfarin. I've many articles on warfarin and it causing whole body calcification very rapidly in the body. I have it everywhere including my brain. I'm getting an MRI because I've been experiencing weird neurological symptoms like I've never had before. They say the wait will be a long one. It is important to get yourself checked for calcification, but in saying that, I don't really know what the Doctors could do stop its progression especially if on warfarin. Stay healthy!

Cheers Holly

[hihannula in reply to Holley]

Hi Holly. I was going over older posts and I’m wondering if you were ever checked for calcification around the annulus of your mechanical valve. You must be taking warfarin as well or are you taking another drug to prevents clots to heart? I’m getting a scan done On my valve as soon as the hospital calls with an appointment. Since my last post to you 10 months ago, I did some research on Vit K2 and warfarin. The articles convinced me, I could take k1 and K2 as long as it was consistent, so I started taking up to 200mcg of K2 daily plus 1-2 large salads and or 4 cups chopped veggies. My dosage has gone up to 4.5 tablets from 3 tablets p/d. K is full of micronutrients which is exactly what autoimmune conditions need. Lots of micronutrients! Anyway my Doctors are aware of my taking vitamins k1 and K2 and said it’s ok as long as you are consistent with the same amount every day. K2-MK7 is needed to prevent the calcification. Obviously, we need d3 and magnesium as well. At the dosage I’m presently taking, I’m trying to reverse some of the calcification! Plenty of studies have proven it works at 200 or more mcg’s of K2. So all of this is, if you had your scan and your annulus (ring around the valve)or anywhere else in your body is calcified, it’s most likely due to the warfarin! Maybe visit the idea of taking K2 and let your Dr or thrombosis team know what your plans are. Initially you’ll need to be adjusted on your warfarin dose. Also if you go the K2 route, I worked up slowly, basically between weekly blood tests. That way in increases were gradual. Let me know if and how your scan went! Cheers. Holly😁