Hi! New here. Wanted to introduce myself.

[MdaPA]

she sounds like a great woman to be married to.

Yup, the best! Thanks.

I was fortunate to also have a bit of that.

Here's wishing you that again someday.

 

[pellicle]

Here's wishing you that again someday.

thanks, but I accept that at my age with my health its unlikely to meet the right person (without all the baggage that comes with becoming single) to ever build a relationship again. The first few didn't work out, so the stats are against me.

I'm not one for hope, it only leads to disappointment. I rely instead on living as happy and balanced as is possible with that I have right now.

To quote from Seneca

(*and my water tank is at 24C by 10am for my solar floor heating system with an ambient air temp of 11C and an internal house floor temp of ~15 C so its all looking like "Thunderbirds are Go")
Best Wishes

 

[ilapreynolds]

not at all. If you simply do the numbers (and indeed look at my bio) you can see that my first was when I was 10, back in the mid 1970's technology and surgical technique was not what it is today (the actual first human valve replacement was 1962, so pretty new stuff). Further working on one so young means valve choice (specifically durability and diameter) are very vexing. So I was fortunate to have that done as a repair which allowed the heart to grow naturally. #surgery1

This lasted until I was about 28 and in that time many developments and new ideas were burgeoning in cardiac surgery, so in 1992 I got someone elses valve (a homograft) which lasted me quite well. Because things are what they are in Australia this stuff was done in one hospital in my state and I formed part of this study. Stuff like the title of that (The homograft aortic valve: a 29-year, 99.3% follow up of 1,022 valve replacements.) just don't happen any more. #surgery2

I continued to lead a normal life (lived abroad and travelled a lot) and accordingly missed about the last 10 years of any follow-up. I felt in 2010 I felt that it was time another checkup (and we were going back to Australia) and found that as well as (I'd suspected based on my own evidence) the valve was becoming incompetent I had a rather large aneurysm which needed urgent attention (IIRC 5.6cm) and so after discussions (perhaps too brief for my wife) I saw that the logical course was to have a mechanical with a bental and begin my career on Ratsak. #surgery3

A get well postcard my Finnish friends sent me when I started my career on Warfarin
View attachment 888583

;-)

In combination with my prior educational and working career I've managed to make a pretty good fist of managing INR (indeed even help the odd person here and there) ... that we now have point of care machines is even better and indeed entirely makes it possible.

The world of the 1990's with labs and vein draws to manage INR seems rather stone age to me, and in reality managing INR is far less onerous than managing ones blood sugar levels and the administration of insulin.

Frankly I just won't know what all the fhukken fuss is about with a finger stick once a week and taking some pills.

If you search you'll find a ton of my posts on:

• measuring INR,
• self managing,
• debunking bull5hit about the horrors of warfarin

View attachment 888582

take the mystery out of stuff >> self test and know thyself.

Best Wishes

Thank you for sharing your story.

That sounds like a lot to go through.

I have a question about the blood thinners. I have hypermobile Elhers Danlos Syndrome. My connective tissue and collagen is made faulty. One thing people with EDS have, is that they bruise really easily. I pretty much always have bruises that I don't know where they come from. Since bruising is bleeding, is that a concern at all for being on blood thinners? My skin is quite fragile, too.

 

[ilapreynolds]

Maybe, maybe not. Normal people without heart valve disease (like me) can and do develop "trace" valve or even "mild" regurgitation as they age and not require surgery or intervention.


Therein lies the rub when someone has multi-valve disease or only has AV disease and has a ROSS procedure. The diseased valves replaced with tissue valves often don't deteriorate at the same rate and may require surgery/intervention at different times.

My wife had a ROSS procedure and a mitral valve repair in her 1st OHS. So she went from a 2 valve disease (AV and MV) to 3 (AV, MV and PV). It was a long, complex surgery and the surgeon was running out of time and tried to do a quick MV repair (commissurotomy) rather than replace it. 3 years later, her MV repair failed and she had her 2nd OHS to replace it with a bovine tissue valve. Her AV and PV valves were running fine at that time and did not require intervention.

17 years later, her bovine MV was now leaking moderately-severely and required intervention. Her surgeon recommended that her MV be replaced with a mechanical valve and during that same surgery, her AV also get replaced with a mechanical valve to reduce the likelihood of a 4th OHS (note she did get a 2nd opinion with another surgeon who said he would only replace her MV with a tissue valve, not mechanical valve, and would not replace her functioning, but slowly declining, AV and PV valves in that same OHS but she did not go with this surgeon). So in her 3 OHS, she got mechanical AV and MV's, porcine for her PV and a simple repair of her TV (so now she has 4 valve disease).

She lives echo-to-echo (annually) and as of her last report, everything is good but we know that there is good chance her porcine PV valve will need intervention hopefully in the far distant future (hopefully TPVR procedure but who knows) but much less of a chance with her AV, MV and TV's.

So you can see how multi-valve disease can get real complicated and opinions can be drastically different among surgeons as when or if to intervene.

Wow! Thank you for sharing her story. That gives me a lot to think about.

So, if the first surgery she had had mechanical valves placed instead, would that have been the only surgery needed? I am sure you couldn't have predicted any of this. That's got to be upsetting. They make the Ross Procedure sound so good... only one to match regular life expectancy, etc.

I have looked into the Ross Procedure. It sounded great in so many ways. But, this is a whole new perspective. I don't think I am a candidate for it anyway, do to my Rheumatoid Arthritis and EDS/connective tissue disease.

 

[ilapreynolds]

@ilapreynolds



I would second this point

So to me what is happening (observe and calculate while you go on with life as normal) is the best strategy to have. If there is progression then it can be dealt with, if not then just put it out of your mind and follow the observation schedule.

I hope you find this helpful advice from Marcus Aurelius

View attachment 888586

Best Wishes

Thank you.

 

[ilapreynolds]

Hi
I just wanted to say that once we have been diagnosed with valvular heart disease we are often exposed to greater risk of ongoing needs for surgery (especially if it was a genetic origin rather than some disease like Scarlet Fever) as we age. To me the answer has always been to accept this, to be pleased we live in a time when more life can be granted with modern advances and to manage things conservatively.

I don't recall how old your wife was at first OHS, but I hope she got at least 30 good years of life before being introduced to the life including surgery.

Best Wishes

Thank you.

By greater risk of ongoing need for surgery, I am assuming that you mean some kind of heart surgery. It doesn't increase the risk of other surgeries, does it?

Yes. We are lucky for the advancements in medicine that we have.

 

[pellicle]

By greater risk of ongoing need for surgery, I am assuming that you mean some kind of heart surgery.

Yes, sorry to he unclear.

 

[pellicle]

Hi

Thank you for sharing your story.

you're welcome ... to me, that's what this place is for ... helping others by sharing our stories and hopefully making it all seem less daungint

That sounds like a lot to go through.

interestingly I never really thought of it from that angle. There have indeed been things that I would have put into the "a lot to go through" basket but my surgeries never felt that way for me

I have a question about the blood thinners....is that a concern at all for being on blood thinners?

well now, that's indeed quite a question. I honestly don't know, but it seems like a good research topic. Let me get back to you with what I find.

PS ... you may already know this, but I thought this was an interesting article:
https://pubmed.ncbi.nlm.nih.gov/15607555/

 

[pellicle]

is that a concern at all for being on blood thinners?

seems it is as you would expect:

https://www.sciencedirect.com/science/article/pii/S0010865016300340

The main cause of death in patients with this type is spontaneous rupture of blood vessels due to fragility of the vessel wall [3]. Based on this fact, permanent anticoagulant therapy would complicate any spontaneous bleeding and could lead to a life-threatening condition.​

...​

When a surgical correction of the valvular disease is considered, a valve-sparing procedure should be tried if the valve does not suffer structural damage. If a valve replacement is planned, we think that the bleeding tendency of the Ehlers–Danlos syndrome patients should be considered while choosing the valve prosthesis. As we saw in this case, mechanical valve prosthesis with necessary adequate anticoagulation, using long lasting warfarin derivates, could be an unneeded added risk for these patients.​

this is significant because there are outcomes no matter what valve type you pick where you may require anticoagulation. Of course its a certainty with a mechanical valve, but even with (so called) bio-prosthesis valves there is a possibility of needing ongoing oral anticoagulation over time.

Seems like its risky ... no matter what you go for.

Best Wishes

 

[MdaPA]

So, if the first surgery she had had mechanical valves placed instead, would that have been the only surgery needed?

Quite possibly, yes.

I am sure you couldn't have predicted any of this. That's got to be upsetting. They make the Ross Procedure sound so good... only one to match regular life expectancy, etc.

She sought out several surgical opinions. The choices in 1997 were mechanical, tissue and Ross. As the goal was to get her through child bearing years without anti-coagulation, she choose the Ross procedure while knowing there would likely be other procedures/surgeries down the road.

 

[ilapreynolds]

Hi


you're welcome ... to me, that's what this place is for ... helping others by sharing our stories and hopefully making it all seem less daungint



interestingly I never really thought of it from that angle. There have indeed been things that I would have put into the "a lot to go through" basket but my surgeries never felt that way for me


well now, that's indeed quite a question. I honestly don't know, but it seems like a good research topic. Let me get back to you with what I find.

PS ... you may already know this, but I thought this was an interesting article:
https://pubmed.ncbi.nlm.nih.gov/15607555/

Yes. Hearing other's stories is very helpful. Thank you.

I'm glad that your surgeries didn't seem to feel that way for you.

Thanks for the article. Interestingly, I am on a lot of these supplements already. With EDS, it seems that the supplements only help as long as you take them. When you go off, things go right back. However, most EDS patients, like me, have trouble swallowing pills, which makes it hard. I had a minor surgical procedure to stretch my throat, but I still struggle. Also, most of us have Gastroparesis, too, which makes this difficult as well, as the stomach kind, of or does, have paralysis from time to time or all the time.

 

[ilapreynolds]

seems it is as you would expect:

https://www.sciencedirect.com/science/article/pii/S0010865016300340

The main cause of death in patients with this type is spontaneous rupture of blood vessels due to fragility of the vessel wall [3]. Based on this fact, permanent anticoagulant therapy would complicate any spontaneous bleeding and could lead to a life-threatening condition.​

...​

When a surgical correction of the valvular disease is considered, a valve-sparing procedure should be tried if the valve does not suffer structural damage. If a valve replacement is planned, we think that the bleeding tendency of the Ehlers–Danlos syndrome patients should be considered while choosing the valve prosthesis. As we saw in this case, mechanical valve prosthesis with necessary adequate anticoagulation, using long lasting warfarin derivates, could be an unneeded added risk for these patients.​

this is significant because there are outcomes no matter what valve type you pick where you may require anticoagulation. Of course its a certainty with a mechanical valve, but even with (so called) bio-prosthesis valves there is a possibility of needing ongoing oral anticoagulation over time.

Seems like its risky ... no matter what you go for.

Best Wishes

Thank you for finding this. I really appreciate it.

Yes. This confirms what I thought.... that it's very risky for me to be on anti-coagulants.

I did know that all valve surgeries require it for some time, which concerns me. I am thinking the less time on anticoagulants the better.

When I get my blood drawn, which I do every 3 months for testing on my immune suppressant for Rheumatoid Arthritis, or when I get an IV, etc., I know where to get my blood drawn, because my veins are very tricky... they are too small, and roll easily, and blow out, etc. If my veins blow, or roll, I will have a huge bruise. Sometimes I just get a huge bruise no matter what.

When I had to have an epidural blood patch for a cerebralspinal fluid leak, they got my IV started just fine, but it took so long for the doctor to come in and get started. He put the needle in my back and then asked for the blood drawn from the IV to put in to do the blood patch.... only, now, the IV wouldn't work. They panicked, as the needle was still in my back and they had to quickly and carefully shift me around to do another IV on another arm to draw blood, but in the middle of it, the doctor changed his mind and switched to a micropuncture on the same arm.. up higher. He gave me two numbing shots, which later became four numbing shots, and threaded a wire and tube up my arm with guided imagery. He sounded like he was about to curse over and over because he was so frustrated. Blood was streaming down my arm next to my face, and he was struggling to get it to work because my veins were too small, rolling, collapsing, etc. He finally got it but couldn't get much blood, so he got the the bare minimum, but not as much as he wanted. But, he completed the blood patch. I ended up with HUGE bruising for about 2 months.

Here's an example. This was after that proceedure. One picture is soon after and the other picture is a while later.

I can get this kind of brusing from an IV, too, without all that trouble.

 

[ilapreynolds]

Quite possibly, yes.


She sought out several surgical opinions. The choices in 1997 were mechanical, tissue and Ross. As the goal was to get her through child bearing years without anti-coagulation, she choose the Ross procedure while knowing there would likely be other procedures/surgeries down the road.

Ah! That makes sense. We do a lot for the opportunity to have kids.

 

[DaveLee]

Very sorry to hear of the problems you are having

I would like to add a few comments.

I was told NOTHING about the problems that could happen or what to expect.
My point is ASK about anything and everything that could go wrong. Ask about the aneurysm, if they have not checked already get a new cardiologist.
check this Types and Causes of Aortic Aneurysms | Mount Sinai - New York.

In 1970 at Fort Brag my medical exam the doc said I had a slight heart murmur but said dont worry about it. Man was he wrong In 2008my doc found the same sound and sent me to a specialist. Once the checkup and testing was all done, The specialist said you have an aortic valve that needs to be replaced soon. He really meant SOON, I was on operating table 7 days later.

I also have an aortic aneurysm, they dont always check for it but its common with valve problems. My cardiologist told me I had 2-5 years left and there was no way they could fix it at my age.

I also had stage 3 heart block, so now I have a pacemaker.

OH one more fun thing. they cracked some ribs on the left side, it was the worst pain I have ever felt. My nurse had to put me on a morphine drip to control the pain. They send me home with Oxycodone and yes it is VERY easy to become addicted to it I came very near but recognized what was happening and gave the bottle to wife and ask her to hit it.

They give me a plastic breathing thing that you must use 3 times a day to self inflect the only pain I have felt worse then the cracked ribs above.

 

[pellicle]

Very sorry to hear of the problems you are having

I would like to add a few comments.

I was told NOTHING about the problems that could happen or what to expect.
My point is ASK about anything and everything that could go wrong. Ask about the aneurysm, if they have not checked already get a new cardiologist.
check this Types and Causes of Aortic Aneurysms | Mount Sinai - New York.

In 1970 at Fort Brag my medical exam the doc said I had a slight heart murmur but said dont worry about it. Man was he wrong In 2008my doc found the same sound and sent me to a specialist. Once the checkup and testing was all done, The specialist said you have an aortic valve that needs to be replaced soon. He really meant SOON, I was on operating table 7 days later.

I also have an aortic aneurysm, they dont always check for it but its common with valve problems. My cardiologist told me I had 2-5 years left and there was no way they could fix it at my age.

I also had stage 3 heart block, so now I have a pacemaker.

OH one more fun thing. they cracked some ribs on the left side, it was the worst pain I have ever felt. My nurse had to put me on a morphine drip to control the pain. They send me home with Oxycodone and yes it is VERY easy to become addicted to it I came very near but recognized what was happening and gave the bottle to wife and ask her to hit it.

They give me a plastic breathing thing that you must use 3 times a day to self inflect the only pain I have felt worse then the cracked ribs above.

Wow, really sorry to read stuff like this.

 

[DaveLee]

" Ask about the aneurysm, if they have not checked already get a new cardiologist."

The reason why I said this is because it will cost me 2 or more years of my LIFE because none the people gave it any thought at all and yes it really is upsetting.

 

[dornole]

Technically I guess I have leaking in all four valves:

"The aortic valve is sclerotic, mild stenosis and trivial regurgitation. The mitral valve is rheumatic, mild to moderate mitral regurgitation. Moderate (planimetered valve area 1.5 cm2, by pressure halftime 1.3 cm2) to severe (mean pressure gradient 12 mmHg at 68 bpm) mitral stenosis. The tricuspid valve is normal in structure. Tricuspid regurgitation is mild regurgitation. The tricuspid regurgitant velocity is 2.6 m/s, the estimated right ventricular systolic pressure is 26 mmHg plus right atrial pressure. There is normal estimated pulmonary pressure by tricuspid regurgitation velocity and right atrial pressure. The pulmonic valve is normal. Trace pulmonary regurgitation. Pulmonary veins show a normal flow pattern."

But trace is basically nothing, and they don't really seem to get too concerned about mild either, it's only the mod and severe they are focused on. I don't have any symptoms like you are describing due to my heart valves, your symptoms seem extreme for moderate mitral regurgitation alone. I have no symptoms at all, certainly not the low O2 levels and wild variations in pulse rate you describe. When I had severe stenosis (pre-repair) I did have shortness of breath, dry cough (esp when lying down, I had to sleep upright), pulmonary edema and hypertension, and coughing up bright red blood.

I don't think your assumption that if your regurgitation is moderate that it's going to progress rapidly is correct. It has been 20 years since my repair and my moderate regurgitation is exactly the same. The stenosis might be going back to severe but they're not sure and I'm still on yearly echos. I think you are right that they may just watch the valves and look for left ventricle enlargement. The fact that you don't have any LV enlargement is great.

Also FWIW, my valve damage is rheumatic and my parents also don't report that I ever had rheumatic fever. Rheumatic heart disease is an autoimmune response to strep that occurs in people with a specific tissue type. Lots of autoimmune issues in my family.

Your case sounds very complex and also very much in need of resolution due to the severe symptoms you are experiencing. To me this kinda screams Mayo Clinic with a collaborative team approach to dx and treatment rather than individual specialists each looking through their own lens. I'm wondering if that could be a possibility for you.

Finally, I am sorry for the abuse you experienced and I hope that now that you are divorced, you will in time feel safer and less stressed with greater opportunities for health and healing. I hope and pray that peace, security and kindness will surround you.