Imminent AVR - 40 y.o. female - advice please

[Amy]

I was diagnosed with congenital severe aortic stenosis, at birth, I believe, and have been following it all this time, until Monday when the cardiologist noted a big jump in numbers and said "It's time." Current peak aortic valve gradient = 103.9 mmHg; mean = 63.3 mmHg. Two and a half years ago, when I last saw him, it was peak = 64 mmHg; mean = 41 mmHg. His words: "It's not an emergency, and it's not urgent, but you should have AVR surgery done in the next FEW WEEKS (!?) or at most few months, but before summer."

I have so many questions; and unfortunately am not confident my doctor either can or will answer them. I've learned a lot from the forum already, but now I want to ask a few more specific questions:

1. I went in because I had had chest pain that woke me up from sleep for 5-6 nights in a row. The cardiologist at first said he didn't think it was related to my AS; after viewing the echo he said he thought it WAS... Has anyone else had this? Did it end up being an indication that things were much worse than you thought? (trying to avoid that sudden death thing)

2. I usually deny any symptoms on exertion, (and symptoms at rest that I'd report were always dismissed by cardiologists) though I now think my exercise tolerance must have gradually gotten worse, and with that, shortness of breath walking up hills, etc. With turning 40 I maybe also thought I was just getting old or out of shape... But now I've been told it's time for surgery, that things have progressed/gone downhill, I feel every single pain, ache, twinge and arrhythmia in my heart; along with every episode of gasping for a breath, even at (particularly at) rest. If they are from the AS (which I more and more suspect they must be) - how bad of a sign is this? Would wearing a Holter for 24 hours give any information as to whether I can stop worrying about them or not? How do you know whether skipped/extra beats are benign or not? What kind of chest pain, at rest, is the worrisome kind for someone with severe AS?

3. Do I really need an "Adults with congenital heart disease" surgeon? There's only like, one of those in my state, from what I can tell, and he, as the doctor put it, 'has a preference for tissue valves' and would not offer me a mechanical one. 'At 40?' I asked. 'Yes'. This leads me to my next question, which is

4. Who are the best surgeons for congenital AVR with a mechanical valve? Can someone recommend a great hospital, in your experience, to have congenital AVR surgery done? How common/safe is minimally invasive surgery (I mean with a smaller incision in the chest, not TAVR) for AVR these days? If it is as safe as a full sternotomy, how can I find a surgeon willing to do this?

5. Should I have a test done beforehand to see if I react badly to Warfarin? What test?

6. I read or heard somewhere that 60% of clinics prohibit patient INR self-testing, presumably for financial reasons (they want you to come in). Um... WHAT??? Should I be concerned about this? I totally want to self manage my INR levels.

7. What INR self-check device is the best, in your experience? Where can I get it?

8. I remember reading about OHS and the menstrual cycle, and how timing could even affect mortality. (!) Has anyone here attempted to time their surgery in this way? If there's anything I can do to offset the higher risk associated with having OHS as a female, I want to do it.

Thank you for reading this far!! Any tips, suggestions, thoughts will be greatly appreciated.

And thank you all so much for teaching me through your posts here, blog posts elsewhere; links, videos and funny pictures shared.... Without you all I would be in full panic mode right now, finding myself living in Arkansas of all places when it's finally time for the surgery.

 

[pellicle]

Hi and welcome

I'm Australian (and we have a variety of other nationals here) and so I recommend you flick through this

https://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html
also, don't miss this talk linked to in that (many seem to)



Getting back to your questions much of what you say is foreign to me as our medical system is quite different.

But let me address what I can

5. Should I have a test done beforehand to see if I react badly to Warfarin? What test?

un-needed and difficult for reasons such as:

1. something like 1% of people have warfarin intolerance, of that most of them don't have any warfarin intolerance but have an allergy to one of the dyes or excipients (so change brand)
2. starting warfarin takes care and needs to be managed, so its not taken lightly in a profession which sees itself as being about minimising harm.

The main problems for warfarin are clear at the start

Absolute contraindications
Absolute contraindications to warfarin include:

• large esophageal varices
• within 72 hours of major surgery
• a platelet count less than 50 x 109/cu.mm which constitutes significant thrombocytopenia
• hypersensitivity to the drug, such as skin ischemic necrosis or priapism
• clinically significant bleeding condition – reassess risks after three months
• pregnancy and within 48 hours of delivery because of its known teratogenicity, as well as its capacity to induce spontaneous abortion and fetal/perinatal bleeding
• coagulation defects at baseline such that the INR is over 1.5
• decompensated liver disease

6. I read or heard somewhere that 60% of clinics prohibit patient INR self-testing, presumably for financial reasons (they want you to come in). Um... WHAT??? Should I be concerned about this? I totally want to self manage my INR levels.

I don't know about the clnics (they're self interested, not interested in you really), however recently I read this in personal communications with another member of his surgical team:

He is a big advocate of home INR monitoring. They support you with home visits to test and adjust your dose for about 2 weeks after you leave and once you are stabilized they encourage the self monitoring route, with occasional visits every 5-6 weeks to the clinic to get tested to make sure your monitor is still accurate.​

I do not subscribe to 2 weeks measurement but its not horrible either, and myself I do this:

http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
no don't try to digest that (because its a lot) and instead treat it as a reference.

7. What INR self-check device is the best, in your experience? Where can I get it?

My vote goes to Roche Coaguchek because:

• its a current device
• its very readilly available
• Roche is a big company and very invested in this technology
• mine has been robust and accurate over the last 9 years of frequent use

Best Wishes

 

[Superman]

A lot to unpack in that post. First, I would defer to your cardiologist regarding symptoms and timing, etc. I expect that if they felt you were in imminent danger, you would be posting from your recovery room and sharing what already happened.

Agree that finding cardiologists and surgeons that specialize in adults with congenital heart defects is difficult. Feel free to use your time to shop around for someone you’re comfortable with. It’s your heart and wallet and post replacement life. Surgeons don’t have to look past the table.

As far as home testing, be your own advocate. It took some back and forth to finally get home testing for me 10 years ago. They weren’t doing it locally. Now it’s their standard of care. Don’t know if my push had anything to do with that, but the timing was curious. I use a coaguchek XS and have the same machine I started with 10 years ago. Just change the batteries as needed. But I did needle sticks at the lab 20 years prior to that. Home testing really didn’t exist.

Really can’t help with southern surgeon or hospital recommendations. My second surgeon is in Florida now. I like to tell people I saw a hooker for my heart. Dr. Hooker.

Welcome to the forum and keep us posted as you navigate this journey!

 

[Superman]

Oh - and noticing symptoms all the sudden. Ever watch, “How I Met Your Mother”? There was an episode that talked about shattering glass. Those things we don’t notice until they’re pointed out, then we can’t unnotice them. The loud chewer gets pointed out, then all you hear is them chewing and it’s more annoying than ever!

I think when we assume everything is normal, it’s easier to push through. We don’t feel any danger. We attribute any challenges to mundane things. Diet, sleep, etc. Now that your valve has been pointed out - everything is easier to attribute to that. Now you know the ice is thin, you’re much more cautious and worried. Ignorance truly is bliss.

 

[caro]

Hi! I’m 31 and female. When I found out I needed surgery last year, my thought was that since I’m going to hit my deductible, I’ll get my surgery done wherever I want. Highly recommend Cleveland Clinic. The surgeons will let you decide on valve choice and have experience with both valves. I had a mini thoracotamy. My surgeon was very experienced with that minimally invasive technique. It’s now just a two inch scar between my neck and right breast. If you go to a hospital like CC, they’ll determine if you’re eligible for a minimally invasive surgery. Go with whatever they recommend. A mini thor is great but has to be done by someone with a lot of experience doing it. Regarding southern hospitals, I’m pretty sure I read on here about a great surgeon at Duke? I have my meter through insurance and call in INR once a week (it’s an automated service but also has option to talk to someone). The company (biotel heart) then shares that number with AC clinic. My insurance company sent out INR meter to me through Roche. It’s a a coaguchek Vantus. Roche doesn’t sell them or the test strips to consumers. Biotel heart sends me test strips whenever I need them. Billed through insurance. I don’t know anything about timing menstrual cycle with surgery. My surgeon never mentioned it to me so I don’t think it’s a problem. There were no bleeding issues during/after surgery and there’s been no changes to my period.

 

[JWalters]

Hi Amy, welcome. I'll share my experiences to help provide perspective:

I transitioned from mild to severe in a short time frame, as well, and had very similar input from my local Cardiologist - i.e. "get it done soon"... general directional advice which was too general for me.

Via word of mouth, I was able to find a great surgeon in Richmond. He had WAY more knowledge in the kind of device needed and how soon to have the surgery (vs local Cardiologist). In talking to the cardio staff at VCU, one comment I liked was : "Dr K does full heart replacements , so a heart valve replacement surgery is not exactly a challenge " - so in summary : find a great surgeon.

 

[Amy]

Dear Pellicle -

I watched the video and read the two links, just before posting to this site. Thank you so much for providing them. I really learned a lot. Although I've finally come round (who wouldn't, based on the data?) to a mechanical valve, my cardiologist and the surgeon he recommends is still talking tissue, and not saying why.... Frustrating. I mean, I can guess why, after reading and reading about this 'debate', but... Yeah. People say to trust your cardiologist, that they've studied all this longer than you... but if your cardiologist is making a recommendation that from your own research is clearly not actually the safest, best option, then what?

Dear Superman -

Thank you for your message. You said 'shop around' - yes, I agree - but how? I've checked the STS website, but as far as I can tell you can only search by individual state, and then by checking individual hospitals, for their rating on Congenital AVR surgery, and it doesn't any give specific information on surgeons. How did everyone here 'shop around' for their surgeon?..... Is there a database or something that you're aware of that has, say, a list of the best-rated hospitals and surgeons for congenital AVR surgery? Thank you again for your help.

Dear Caro -

Thank you for the information. I have contacted CC and was told I can 'choose or be assigned to a surgeon'. How does one choose? How did you choose?

Dear JWalters -

Thank you for your message.
..."advice which was too general for me" - yes, that's exactly how I feel. : ) Thank you for understanding.
..." - so in summary : find a great surgeon." Yes, yes, yes. That's just where I am.

Also, am I asking the right questions? Are there others I should be asking instead? Are there things you all learned along the way, or even afterwards, that you'd have done differently, or that were really helpful, that you could share?.. I'd be grateful for any insight you can give.

Thank you!!

 

[Unicusp]

Dear Pellicle -

I watched the video and read the two links, just before posting to this site. Thank you so much for providing them. I really learned a lot. Although I've finally come round (who wouldn't, based on the data?) to a mechanical valve, my cardiologist and the surgeon he recommends is still talking tissue, and not saying why.... Frustrating. I mean, I can guess why, after reading and reading about this 'debate', but... Yeah. People say to trust your cardiologist, that they've studied all this longer than you... but if your cardiologist is making a recommendation that from your own research is clearly not actually the safest, best option, then what?

Dear Superman -

Thank you for your message. You said 'shop around' - yes, I agree - but how? I've checked the STS website, but as far as I can tell you can only search by individual state, and then by checking individual hospitals, for their rating on Congenital AVR surgery, and it doesn't any give specific information on surgeons. How did everyone here 'shop around' for their surgeon?..... Is there a database or something that you're aware of that has, say, a list of the best-rated hospitals and surgeons for congenital AVR surgery? Thank you again for your help.

Dear Caro -

Thank you for the information. I have contacted CC and was told I can 'choose or be assigned to a surgeon'. How does one choose? How did you choose?

Dear JWalters -

Thank you for your message.
..."advice which was too general for me" - yes, that's exactly how I feel. : ) Thank you for understanding.
..." - so in summary : find a great surgeon." Yes, yes, yes. That's just where I am.

Also, am I asking the right questions? Are there others I should be asking instead? Are there things you all learned along the way, or even afterwards, that you'd have done differently, or that were really helpful, that you could share?.. I'd be grateful for any insight you can give.

Thank you!!

Hello. I agree with others comments.
On phone and slow texting, so brief.
I recommend that you contact Dr. Lars Svensson at the Cleveland Clinic. Simply the best and this is his specialty. Yes, I'm a little biased as I'm a repeat customer to him. No matter where you go, you will hit the max out of pocket, so may as well go to the best.
Regarding Valve, I highly recommend mechanical. Lars will help decide if SJM or On-X is better for your anatomy.
Keep researching and come to the decision best for you. Hang in there!

 

[Amy]

Hello Unicusp,

Thank you for your kind message. How's your recovery? I hope you're feeling better and better everyday. Is having an electric recliner everything you thought it would be? Do you use it for sleeping, or just for getting up from sitting, or....?

Can I ask - you said 'this is his specialty' - do you mean congenital AVR surgery? Do you know how important it is to have a congenital surgeon? I don't want to have someone who only works on tiny babies, do I?!.... Or are most people's valves here on the forum congenital, such that I don't need to emphasize or consider that?

p.s. I hate texting on a phone too. Since being told it's time for surgery a few days ago, my husband's lent me his Mac to do research every day, and it's GREAT. I could type a whole novel.

Take care of yourself.

p.s. Do you have a blog or anything detailing your experience at CC? Just curious about your experience.

 

[pellicle]

HI

Dear Pellicle -
I watched the video and read the two links, just before posting to this site. Thank you so much for providing them.

glad it was helpful.

Although I've finally come round (who wouldn't, based on the data?) to a mechanical valve, my cardiologist and the surgeon he recommends is still talking tissue, and not saying why.... Frustrating.

so you've directly asked and he hasn't answered that?

I mean, I can guess why,

you shouldn't be left guessing.

People say to trust your cardiologist, that they've studied all this longer than you... but if your cardiologist is making a recommendation that from your own research is clearly not actually the safest, best option, then what?

well I'd simply ask them to justify it and express your opinion. If there is no dialog then move on to another cardiologist. To me, trust your team is a generalisation, and I've seen occasions here and over in the USA where the cardio is just a rigid thinking PITA that is not interested in engaging with you as a person, but only considers a statistical example sits before him.

As I highlight here:

that they write: "and thus the debate revolves more around valve durability and anticoagulation."

This itself means that mechanical valves have the durability and that the only "disadvantage" is anticoagulation. Which means that if you can not properly tolerate anticoagulation (as I posted recently) OR that you will fail in your compliance with anticoagulation (seems many do) that the risks of THAT issue tip the balance to favoring a bioprosthesis.

This therefore means that your cardio thinks you will not take your pills and do your testing rigorously for the rest of you life (or that hes a nutbag).



let me quote from European Heart Journal doi:10.1093/eurheartj/ehs109
Guidelines on the management of valvular heart disease (version 2012)

"
There is no perfect valve substitute. All involve some compromise and all introduce new disease processes, whether they are mechanical (single tilting disc and bileaflet valves) or biological.
The latter include homografts, pulmonary autografts and porcine, pericardial bovine or equine bioprostheses. Xenograft valves can be further subdivided into stented and stentless. Stentless valves may have better haemodynamics but no improvement in long-term durability has been demonstrated so far.
...
All mechanical valves require lifelong anticoagulation. In biological valves, long-term anticoagulation is not required unless AF or other indications are present, but they are subject to structural valve deterioration (SVD) over time.
"
[bold mine]
p30-31

reasonably clear really

next (same page)

"
A more recent trial randomized 310 patients aged 55–70 years to mechanical or biological prostheses.201 No differences were found in survival, thromboembolism or bleeding rates, but a higher rate of valve failure and reoperation was observed following implantation of bioprostheses.
"

so no difference in survival, right up until they needed a redo and then of course the stats for the bioprosthesis are "reset" (or no longer counted) and the mech valver just went on living without a redo (and attendent risk from infections, surgical issues like "oh, yes, that pacemaker was needed..."

Now the tables associated with choices are pretty clear too, although that "informed patient" ******** at the start is worrying :

What is seldom clear to people is that row 2 and row 4 & 5 are essentially identifying the same people

then on the other side of the coin: again row 1 for the anxious obsessive disorder folks (expecting eye rolls from some members of the community for my opinion there)

row 2 is on the point I already made about compliance with ACT, row 4 is just "what?" and rows 5 & 6 make logical sense.

If there are no satisfactory or clear answers to those questions I'd shift to another Cardio

Best Wishes

 

[Superman]

Dear Superman -

Thank you for your message. You said 'shop around' - yes, I agree - but how? I've checked the STS website, but as far as I can tell you can only search by individual state, and then by checking individual hospitals, for their rating on Congenital AVR surgery, and it doesn't any give specific information on surgeons. How did everyone here 'shop around' for their surgeon?..... Is there a database or something that you're aware of that has, say, a list of the best-rated hospitals and surgeons for congenital AVR surgery? Thank you again for your help.

Also, am I asking the right questions? Are there others I should be asking instead? Are there things you all learned along the way, or even afterwards, that you'd have done differently, or that were really helpful, that you could share?.. I'd be grateful for any insight you can give.

Thank you!!

Honestly, I don’t have a ton of experience shopping around, except for cardiologists. There it’s just looking at bios online. Nothing wrong with interviewing them either. It helps that my wife is a medical professional and these folks have reputations. As far as surgeons go- I was a teenager for my first surgery and it was no question mechanical back in 1990. I didn’t have much say but was placed in the very capable hands of Dr Seong Chi, who was a pioneer of open heart surgery in Mid-Michigan. They’ve since named that part of the hospital after him and his wife (also a Dr).

My second surgery in 2009 was due to an aneurysm. My surgeon was a big believer in tissue valves and everyone would be getting TAVR’s in 10 years anyway. A co-workers husband had just had a valve/graft done by him the year before I did. I told him I want a one piece valve / graft from either On-X or St Jude. St Jude had served me well up to that point, On-X didn’t make a one piece yet, so St Jude it was. He was very open to a collaborative approach despite his personal preference. Gave me confidence that he was comfort with his abilities.

As much as shopping around can be good, simply being your own advocate can be better. Surgeons can be arrogant and uncompromising- but ask my Coumadin clinic about me. . I’ll bet there are notes in my file. (“Here’s what I did, this is what I’m doing next week, update the chart. Call me in some 5’s and 1’s. I’ve been at this 30 years. When did you start?”). Okay - I’m more polite then that - but I am comfortable giving input about what I think makes sense for me.

 

[Unicusp]

Hello Unicusp,

Thank you for your kind message. How's your recovery? I hope you're feeling better and better everyday. Is having an electric recliner everything you thought it would be? Do you use it for sleeping, or just for getting up from sitting, or....?

Can I ask - you said 'this is his specialty' - do you mean congenital AVR surgery? Do you know how important it is to have a congenital surgeon? I don't want to have someone who only works on tiny babies, do I?!.... Or are most people's valves here on the forum congenital, such that I don't need to emphasize or consider that?

p.s. I hate texting on a phone too. Since being told it's time for surgery a few days ago, my husband's lent me his Mac to do research every day, and it's GREAT. I could type a whole novel.

Take care of yourself.

p.s. Do you have a blog or anything detailing your experience at CC? Just curious about your experience.

Hello. I don't have a blog but shared info in my previous posts which you can review. I had very rare congenital defect; enlarged ascending aorta (repaired by Lars in 2013) using keyhole method and unicuspid aortic valve replaced with On-X by Lars last Friday.
He only works on adults. I'll attach a picture of his bio which is hung in multiple places at the CC. He is the Chairman. You can't do better. He's got lots of practice and great outcomes. I only give honest feedback. It takes alot to impress me. Lars is the man!

 

[Amy]

well I'd simply ask them to justify it and express your opinion. If there is no dialog then move on to another cardiologist.

row 4 is just "what?"

Hahaha, yes, exactly. Thank you. Though I always thought I'd want a tissue valve, (at least for the last 20 years, just thinking 'casually', if thinking about this can be casual, about it), I feel pretty certain, after being told now it's time and researching all day long, all this week, looking at everything I can, I know I'll have to have a mechanical one.

I've sent a message to my cardiologist asking him to justify the surgeon wanting to implant a bioprosthetic valve. I don't think he himself maybe knows, so I"ll have to talk to the surgeon directly - can I ask - is it typical to have a phone, or a face-to-face meeting with a few surgeons before determining which one you want to do your surgery?

On a related note, (finding doctors) CC got back to me, but their 'recommended surgeon' (based on what?...) only does 60 AVR surgeries a year, and I don't know if he works on congenital adult patients (is that something it's wise to differentiate about when choosing a surgeon?) Does anyone have experience requesting a different surgeon from CC when they've already 'chosen' one?

Thank you for taking the time to respond.

 

[pellicle]

can I ask - is it typical to have a phone, or a face-to-face meeting with a few surgeons before determining which one you want to do your surgery?

myself I've only ever had face to face

however Australia is perhaps different to the USA in that way (too)

 

[Unicusp]

myself I've only ever had face to face

however Australia is perhaps different to the USA in that way (too)

Yes, the CC offers those options. Go to the website.

 

[pellicle]

Yes, the CC offers those options.

what is the CC please?

 

[Unicusp]

what is the CC please?

Sorry, Cleveland Clinic. The suggestion was for Amy to check out the website and see the appointment options.

 

[Unicusp]

Hello Unicusp,

Thank you for your kind message. How's your recovery? I hope you're feeling better and better everyday. Is having an electric recliner everything you thought it would be? Do you use it for sleeping, or just for getting up from sitting, or....?

Can I ask - you said 'this is his specialty' - do you mean congenital AVR surgery? Do you know how important it is to have a congenital surgeon? I don't want to have someone who only works on tiny babies, do I?!.... Or are most people's valves here on the forum congenital, such that I don't need to emphasize or consider that?

p.s. I hate texting on a phone too. Since being told it's time for surgery a few days ago, my husband's lent me his Mac to do research every day, and it's GREAT. I could type a whole novel.

Take care of yourself.

p.s. Do you have a blog or anything detailing your experience at CC? Just curious about your experience.

Sorry I missed some parts earlier. My recovery is going well. Last night was my first night home. Slept in bed, but probably should have tried chair. Mattress was too soft. But today feeling much stronger. Out and about with my kids who drove. Lots of steps in.
More later. Take care.

 

[DachsieMom]

Everyone has given you great advice so far. I don’t recall worrying about my period so I guess I must not have had it at the time of surgery.
Random tip - get a very light, not tight jogging bra that opens in front. Like a $5 one from Walmart. You will want to wear one so you will have a better scar (you willl be mostly laying down when you get home, and if you don’t wear something your scar can spread a bit), but you need something a loose that you can put on without reaching behind your back.

 

[user 15848]

I was diagnosed with congenital severe aortic stenosis, at birth, I believe, and have been following it all this time, until Monday when the cardiologist noted a big jump in numbers and said "It's time." Current peak aortic valve gradient = 103.9 mmHg; mean = 63.3 mmHg. Two and a half years ago, when I last saw him, it was peak = 64 mmHg; mean = 41 mmHg. His words: "It's not an emergency, and it's not urgent, but you should have AVR surgery done in the next FEW WEEKS (!?) or at most few months, but before summer."

Hi Amy, best wishes, you will be fine, Do inform yourself and Valuate the pros and cons, BUT
do pay Attention to what Pellicle says here, on the subject, reading that posting he sent you is what
made me make choice;

We are all different, adn male/female/age/future children, all are topics to consider with your Cardiologist; and also
chatt with people here, we all have experiences to share

As per self testing, i dont go to LABS since the Chinese Flu landed, so i use COAGUCHECK from ROCHE and it works fine for me and many others

I live in Canada, and here the cost is $8 cnd per test, and i have to buy them from USA cause it is eassier to get them there than here

All the best !!

YOU will be fine no mater what choice you make, for me, 63 at the time my only concern was "not to do this again" and so i choose mech, other people think form other perspectives, and there is no right or wrong