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

[EMJEF]

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.

Hi Amy

I’m in UK.

I had a VSD closure and my aortic valve replaced with a 19mm mechanical St Jude valve in 1986 when I was almost 4 and it’s lasted me until now (although to be honest my cardiologist has been pushing for surgery since not long after my son was born 6 years ago).

Currently being recommended Ross procedure as have been told quality of life will be better but I can opt for mechanical if that’s what I’d prefer-which it is. Had a phone call in January to say that once the risk from Covid decreases and they are allowed to have me in for Pre op they’ll call. With our lockdown starting to be eased in next few weeks, I’m expecting to get the call within the next month or two.

Self testing is great. I have a Coagucheck XS and then just ring the hospital with my result. Have to go twice a year to ensure it’s still in range compared to their machine. I’m a teacher so means being tested doesn’t interfere with my work.

Obviously when I had my first surgeries, periods weren’t an issue but it could come up when I go for Pre op but not heard of this myself.

This forum has been amazing at putting my mind at rest regarding the surgery and also my preference to sticking with mechanical. I have certainly never felt like I missed out on anything having mechanical and having to be anti-coagulated so don’t see the point in trying something new now. Hoping that another mechanical will last me another 34 years at least and then I’ll be 72!

 

[caro]

@Amy I requested Dr Johnston at Cleveland Clinic for mine. He met with me in November of 2019 and had me do a stress echo. I had surgery three months later. Johnston is in a lot of vids you can watch online. There’s ones with Svensson and Johnston together too. Johnston said he does about half bio and half mechanical replacements. He was great. He specializes in BAV and minimally invasive procedures. Would talk to him as well if you are interested in possibility of a mini-thor. Def talk to more than one surgeon. I met with one in NYC where I live as well. Along with Svensson and Johnston, l’ve heard great things about Roselli and Unai for AVR. All do adult surgeries.

 

[Chuck C]

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.

You have done your research and have concluded that a mechanical valve is right for you. At age 40, I would strongly agree with your decision. Do not back down on insisting on the valve of your choice. All of the guidelines that I have ever seen, US, Europe, recommend a mechanical valve at age 40. Personally, I would not consider a surgeon who took the position that he will only do biological valves, regardless of the patient's age. To me, that is unimaginable. I can't say for certain if 60 AVR surgeries per year is too low. It could be a lot lower, but I would expect that you would be in very competent hands at Cleveland Clinic. I am most likely choosing mechanical at age 53. I did go back and forth a bit, but at 40, this would have been a very easy choice for me.

 

[Amy]

EMJEF -

Thank you for sharing a bit about your story. Like Chuck C says above, 'do not back down on insisting on the valve of your choice'. : )
I remember reading some research years ago that indicated that depending on whether a woman was in the follicular or luteal phase of the menstrual cycle, there would be less postop pain, less need for as much anesthesia, less arrythmia, etc. All I can find is a review of the (apparently scant) literature from researchers in India, so that's why I was asking if anyone here had ever heard anything about it.

Caro -

How did you choose Dr Johnston out of all the surgeons at CC? I'm having trouble knowing whether I ought to try to talk to him, or Roselli, or Unai, or Dr Svensson. I wish there was a page with all the statistics on how many of each surgery they've done, and with what success; what their wait times are, etc. How do you know who is best? I've looked at their biographies, videos, publications, who is getting money from the bioprosthesis industry ( : o ...... But I'm still overwhelmed. Meanwhile these new chest pains and gasping for breath are not all in my head and it's really making me nervous.......

Chuck C -

Been reading a lot of papers, and even up to age 70, many guidelines suggest a mechanical valve has lower mortality. Has your cardiologist or surgeon determined it's time for your surgery? Or are you just getting ready?

 

[Amy]

Superman -

A one-piece valve? Why did you insist on that? Is there research indicating better rates of long-term mortality with that, or what?

How much research can one do on the different types of mechanical valves? Any recommended research papers on this topic? All I've seen so far is that getting one that's too small can lead to problems.

jlcsn2015 -

Thank you for your message and all the information. $8 per test that you take weekly or so, right? May I ask - how often do you have two consecutive out of range measurements? Don't you get nervous waiting for the week to go by so you can test again and decide whether to adjust your dose or not?.... Also, how do you trust that the clinic you call when you're out of range knows how much to adjust by?..... And do you take an 81 mg aspirin daily as well?

Yes, I'm indebted to pellicle and others for inspiring me to read the research, and making me see the truth that a mechanical valve is definitely the right choice for me. I've been thinking how I'll ever be able to repay them..... A poem? A song? Care packages? Cash?

 

[pellicle]

I've been thinking how I'll ever be able to repay them.....

perhaps just telling your story here later ... we always need current stuff and especially from the ladies

I do my best to repay my surgeons by helping newbies as I can and helping with INR management as I can.

Best Wishes

 

[Superman]

Superman -

A one-piece valve? Why did you insist on that? Is there research indicating better rates of long-term mortality with that, or what?

You’ll see me talk here about the sleep at night test. For me, stitching a valve in place, then stitching the graft to the valve or someplace else created two places to stitch stuff instead of one. One piece was less stitching and passed my sleep at night test. It was that scientific. And if any of these literate folks comes in here and wrecks that for me with research and other BS, well - I just may quit!

 

[caro]

@Amy I read a lot/watched YouTube videos. At the beginning of my process, I thought I’d want a bio valve. He and Svensson really like inspiris resilia but both still do mech replacements regularly. CC was one of the first hospitals to use inspiris resilia. Dr J said he does about half bio and half mech replacements. Also found online and from talking to him that he does a lot of minimally invasive procedures. I thought that if I was a candidate for it, a mini thor would be a plus in case I have to have any other surgeries down the line as I age to repair a aneurysm or anything else that could happen. It would mean less scar tissue for a possible a mini sternotomy or full sternotomy in the future. I got a mini thor and I’m so happy with it. Didn’t have any issues after surgery. he had me do a stress echo in December because I was asymptomatic. He felt based on results that I should have surgery in a couple months. Other surgeon I met with in NY said wait until symptoms. I liked that Dr Johnston didn’t pressure me on valve choice. My cardiologist in NY was super unhelpful because of how strongly she felt I should get her preferred choice. So it was nice to talk to a surgeon who listened and was honest. He said if I met with 3 surgeons at my age, each would recommend a different valve choice (mech, bio, Ross). When I met with him again a few days before surgery, I told him that I changed my mind and wanted mechanical. I said I wanted to put off another surgery as long as possible. I said I didn’t think I’d sleep as well at night with idea that I need several more OHS due to my age if I were to get bio. He said “we don’t want that” (not sleeping well). He was very professional, calm and nice. I was very confident. I would be confident with any of those surgeons at CC. I would talk to any of those surgeons. They do enough of these surgeries at such a high success rate, I’d call all of them the best.

 

[Superman]

perhaps just telling your story here later ... we always need current stuff and especially from the ladies

I do my best to repay my surgeons by helping newbies as I can and helping with INR management as I can.

Best Wishes

Speak for yourself! I’m mostly Dutch and have five kids to feed! Cash is fine.

I kid! I kid!

Echoing pellicle - we wouldn’t share our experiences if the sharing didn’t bring some personal value to us and to others. For me, it’s being able to provide resources and info I never had growing up in the dark ages before the inter webs.

That, and Covid had me working in the basement so here I are!

 

[pellicle]

That, and Covid had me working in the basement so here I are!

 

[dornole]

Emergency and Urgent mean different things to docs than to the rest of us I think. I was told the same in the hospital and apparently what that meant was “we have time to make Dr Expert come in from home and deal with this and gather a dozen people in this OR to drop f bombs. Lol. It’s probably time for surgery.

 

[Amy]

pellicle -
yes, you're right. I'll keep that in mind and try not to disappear if my problems do.

superman -
thank you for being funny and reminding me not to take all this so seriously, or let it completely take over my life, as long as I can help it.

caro -
thank you for your message. okay, I'll see if I can't find more YouTube videos on the different surgeons at CC. It's just so hard to tell. What I don't want to do is request Dr Svensson and then he sees it as too simple and doesn't take the time to answer my questions, whereas if I'd gone with one of the newer surgeons.... Ahh well, we'll see how it goes.

dornole - ha ha ha. I'll keep that in mind. Though it's quite anxiety-inducing, feeling symptoms without being able to get a second opinion about them (working on it though - such a process) - as long as I'm still alive, I should be fine; and if not, well then there's nothing to worry about anymore. ; )

 

[Amy]

Hey - a quick question to all you experts out there -

The Cleveland Clinic has emailed me that Dr Svensson doesn't do any phone consults/virtual visits. A 'practice manager' will inform me as to whether Dr Svensson thinks it's time for surgery or not, and then I just go to Cleveland I guess, have more tests and then have the AVR done. So...... I feel like I'll have a ton of questions that it would be best to talk to the surgeon about - is that not right? What is your experience, guys? I hate all this going through so many middle...people. What do you think? Tell me again - how many surgical consults you guys had before your valve replacement?

 

[Amy]

Hey Superman -

What are the one-piece vs two-piece mechanical valves? I really can't tell from the pictures....

 

[Superman]

Hey Superman -

What are the one-piece vs two-piece mechanical valves? I really can't tell from the pictures....

View attachment 887602

It’s when you have an aneurysm repair and valve replacement.

The replacement for the ascending aorta is seamless with the valve.

 

[Chuck C]

Hey - a quick question to all you experts out there -

The Cleveland Clinic has emailed me that Dr Svensson doesn't do any phone consults/virtual visits. A 'practice manager' will inform me as to whether Dr Svensson thinks it's time for surgery or not, and then I just go to Cleveland I guess, have more tests and then have the AVR done. So...... I feel like I'll have a ton of questions that it would be best to talk to the surgeon about - is that not right? What is your experience, guys? I hate all this going through so many middle...people. What do you think? Tell me again - how many surgical consults you guys had before your valve replacement?

I have my surgery in 3 weeks and I have had 2 consultations with my surgeon. However, I got the sense that this is not typical and doing one consult pre-surgery was more the norm and I am sure others will give input here. For me, I was kind of surgeon shopping, so I had a lot of questions to ask ahead of time, thus my first consult while I was still in the moderate stenosis range. Once I crossed into severe, I had another consult, which was were I sought his opinion on timing and confirmed valve selection.

Based on several videos I have watched by Lars Svensson and the feedback from others who have been under his care, and his general reputation in the field, I believe you will be in very good hands with him. Ideally, it would be nice to do an in person consult with him a few weeks in advance, but if you have the opportunity to have him handle your surgery, you might really consider taking advantage of it, even without a video consult. Hopefully some of the folks here who have been under his care will weigh in and give you their thoughts, but many consider him one of the very best and Cleveland Clinic is ranked #1 in the US as well, so I expect that they have a top notch team.

 

[Unicusp]

Hey - a quick question to all you experts out there -

The Cleveland Clinic has emailed me that Dr Svensson doesn't do any phone consults/virtual visits. A 'practice manager' will inform me as to whether Dr Svensson thinks it's time for surgery or not, and then I just go to Cleveland I guess, have more tests and then have the AVR done. So...... I feel like I'll have a ton of questions that it would be best to talk to the surgeon about - is that not right? What is your experience, guys? I hate all this going through so many middle...people. What do you think? Tell me again - how many surgical consults you guys had before your valve replacement?

Hello Amy. This does not surprise me. Dr. Svensson is old school and in high demand/pressed for time. I imagine the demand for him exceeds his supply of time. Consults with him are brief, succinct, and to the point. No time for BS. He just needs good comprehensive test results from CT, Echo, Spirometry and he gives his very precise recommendation. He will provide surgical options,, pros, cons, and risks. He has lots of practice and has seen it all. I believe he will minimize your risks and maximize your outcome, better than anyone out there. I went to him twice. Having had a mini sternotomy and full sternotomy, I also recommend the full. Believe it or not, less pain, faster recovery, less issues afterwards. If you have recent comprehensive test results, you can send ahead of time to gauge timing and severity. Cleveland will redo all of the tests because they are much more comprehensive than elsewhere. An echo there takes up to an hour vs. 15 minutes at my local hospital. If he then says you are severe. Make one trip. Testing thru to surgery. Stay at the Marriott Residence Inn right across the street. I parked once and walked there everyday. Hotel is almost new and very nice. I can IM you his Scheduling Nurse Practioner Manager contact info.. Hang in there! Delaying it is harder than recovery.

 

[Sheenas7]

Hey - a quick question to all you experts out there -

The Cleveland Clinic has emailed me that Dr Svensson doesn't do any phone consults/virtual visits. A 'practice manager' will inform me as to whether Dr Svensson thinks it's time for surgery or not, and then I just go to Cleveland I guess, have more tests and then have the AVR done. So...... I feel like I'll have a ton of questions that it would be best to talk to the surgeon about - is that not right? What is your experience, guys? I hate all this going through so many middle...people. What do you think? Tell me again - how many surgical consults you guys had before your valve replacement?

I was told by my cardiologist in 2001 that it was time. I wanted to put it off. He said this was the golden time before my muscle would get any damage. I went to 3 other cardiologists. One said you can still wait and take medicine. Two agreed it was time to do itl!
I did move after that to get set up. My cardiologist ( I was in my early fifties then) and he had been caring for me since age 19, recommended Dr. Cosgrove at the Cleveland Clinic. I went with that. I was not given a time to meet him and ask any questions. They told me he did not do that. It was very frustrating. I put my faith and my life on him and had the surgery without a personal consult. I asked to meet him over my week there doing all the testing. I was always told a time which was always cancelled. Well so much for that and all the waiting. They also pushed my surgery from a Friday to a Monday. Turns out people who pay cash for the surgeries from overseas were getting to meet him. I got to talk to him as they wheeled me into the operating room already prepped for surgery and sedated for a minute. After the surgery while I was still on a ventilator in intensive care and very drugged, he approached me and told me he had not been able to repair my valve and had given me a
St Judes mechanical. I was happy about that since I had left it up to him to decide. I see from other posts that maybe things are better now and you can see your surgeon. That was 2001 and its been a long time! Best of luck. CC has an incredible reputation and great surgeons.
How do I know that the donors and certain people got access to him? Because I did some videos for Medtronic along my life with different pacemaker replacements, and they had a celebration here in Washington d.c. and I was invited . Medtronic sponsored it and the guests included Dr Cosgrove and his wife! That is how I finally met him for a couple of minutes.
When I arrived, there were many donors and luminaries and during cocktail hour some told me their journey and how they did get to meet Dr. Cosgrove ahead of time. Well i guess if you were a big donor, then you had access. Also people from overseas paying cash with no insurance were also priorities.
I don't know how things are now in CC. I do know that about the same time I had a friend who had the same surgery here and she asked me to go with her and meet the surgeon. So some do agree to meet and answer questions. This was just my experience which I shared with you all. Hope you get the best care and get all your answers. My surgery was in 2001 and I see from the forum that things in CC have changed and maybe it won't be so hard to get a consult now. Best of luck!

 

[caro]

Any of those surgeons will be great. I only met two before surgery. There are people on here who have had great outcomes with all of the surgeon names listed above. If you send them your echos and he thinks it’s time for surgery, you’ll meet with him the day before surgery. I assume- unless covid is preventing that. I don’t know why it would. From what I understand a lot of people do it that way. Just depends on timeline. If he doesn’t think it’s time, you could get a second opinion and perhaps a consult then.

 

[Amy]

Ok fellow valvers, more questions:

1. If you self-manage your INR, what was the timing of getting a device and becoming competent in adjusting Warfarin dosage? Would it be better to get a device before surgery? Does it come with a manual? Is that manual your most helpful source in determining dosage adjustments? How do I know whether the doctor I choose knows anything about adjusting INR?

2. Did you need a shower chair?

3. What drugs did you receive post-op, what dosages, (if you remember) what alternatives did you request, and were there any near mix-ups or side effects you had that I should be aware of? I mean, for example, ‘you can ask for * instead of ** to reduce constipation’ or ‘the nurse mistakenly turned down my pacemaker instead of my IV potassium and nearly killed me,’ or ‘I wish I’d paid more attention to whether everyone washed their hands before touching me.’ or ‘I should’ve requested nonopiod postop drugs beforehand,’ ...You know, fun, useful things like that.

4. On a related note, apparently no one can stay overnight with me due to COVID...any tips for surviving in the hospital at night? Should I put bells on the IV poles/cords so I wake up when someone comes in to change something?? Is there a trick to getting the nurses to let you choose an alternative painkiller or take your pain seriously, etc.?

Thank you all for your help. Any tips, favorite useful thread recommendations, etc. would be great to hear about.

....It really is quiet around here, isn’t it? Is everyone off enjoying some other forum I don’t know about or what?