Looks like mom has to have mitral valve replaced - sorry this is kind of long

[watson524]

Hi everyone,

I've been reading a lot on here and it's a very helpful site. My mom is 72 and as a kid, had rheumatic fever and we all know what that can do. She's been on coumadin since 1983 with very steady levels and other than easier bruising, no issues (monitored monthly via bloodwork in hospital lab). In 1997, she had a balloon valvuloplasty to treat MV stenosis, which slightly increased existing MV regurg but not to a point to worry about. In 2000, her local cardiologist thought it was time to replace the valve after reading her echo. We went to Cleveland Clinic to see Dr. Hobbs and an echo and TEE was performed there by Dr. Rincon. Dr. Hobbs determined that at that time, a replacement wasn't needed and continue monitoring. Well, 10 years later, her local cardiologist has said it needs to be replaced after he did her last echo a month ago. There is someone locally (Scranton, PA) that can do it but she likely Cleveland (even though it was a big place, it didn't feel big) and let's face it, they're up there in line for the best in the US.

Some stats from her echo:
Ejection fraction is "at least 60%" - good
Max gradient across the MV = 14mm - bad
mean gradient across the MV = 5mm - ??
Severe mitral regurgitation
MV showed some thickening and calcification consistent with stenosis
Aortic root size = normal - good
No aortic stenosis or regur noted - good
Pulmonary artery pressure = 63mm - BAD
Ventricles = normal size - GOOD
Atria = enlarged

She also has constant A-Fib (she can't feel it) but over the years both doctors said they would not shock her to put her back in rhythm because the out-in-out, etc is worse than always being out of rhythm. I asked both the GP and cardiologist about the Maze procedure or some kind of ablation but both recommended against it since she would have to be on the coumadin anyway (I asked if the shock they give to "wake up" the heart after coming off bypass would temporarily put her back in rhythm and then she'd go out again and they said no, it's not the same kind of shock like a big chest paddle shock.

I've now gone with her to meet with her GP and her Cardio so I could talk to them. Both support her decision to go to Cleveland. As I understand it, the PAP being above 60mm is sort of a threshold that she has now crossed. We don't want to have her have signs of CHF and also don't want her ventricle to enlarge so that's why they're saying now is the optimal time. Both have said a mechanical valve given her age and not wanting to go through replacement again in 8 - 10 years. No other medical issues, from bloodwork, kidney function etc ok. Not diabetic so both are confident she is a good surgical candidate and don't forsee complications (obviously there are no guarantees).

Since we're really thinking it has to be done, she just wants to do it and get on with it. She asked the cardiologist if she could be out and back by Thanksgiving... he said it's all up to their scheduling but since we're driving from about 8 hours away, they will try to set it up like this: day 1, meet with cardiologist; day 2, catherization and possible TEE; pending outcome of cath and TEE, possibly meet with surgeon late in the day on day 2 (if surgery is deemed needed), surgery on day 3. They said to expect about 7 days in the hospital.

I will be going out with her as I'm an only child and my father passed away almost 3 years ago. I've asked about cardiac rehab back home and have looked into a program at a local hospital that has exercise gurus, doctors, nurses, psychologists and dietitians on staff.

A few concerns I have that you might be able to help answer:
a.) the drive home... I'm assuming we can do it but stop every hour or so so she can get out and walk around and keep things circulating (she is afraid of throwing a clot but both doctors said they won't release her until INR levels are steady)
b.) after care at home... Her cardiologist said she would go and see him and be under his care and if something did happen, the local hospital is able to deal with it
c.) Coumadin.... no big deal for her since she's been on it almost 30 years but do rates tend to be in flux for a while even though they might not have been before surgery?

Also - does anyone know how long the surgeons follow up appointment typically is? We'll have to plan for a post surgery trip out there for a follow up I imagine.

Her cardiologist noted the St. Jude valve was the most popular and likely what would be used but I've also seen an On-X.

The other big question now is a surgeon. Her cardiologist happens to be good friends from way back with Dr. Hobbs (who he is going to refer her to again) and I gave him a list of surgeons I looked into (Gillinov, Lytle and a few others) and he said any are excellent but I'm not quite sure how/if we get to pick?

I'm sure I'll have more questions as I read and get prepared. Right now we're just waiting to hear from her local cardiologist on a date to go out there so it's nerve racking.....

Thanks in advance for reading!

 

[kfay]

I'm sure your mom will be in excellent hands at the CC. Obviously you haven't yet had a chance to meet with a surgeon there, but I'll be curious to see what valve they recommend for your mom. At 72, it is widely acknowledged that a tissue valve would outlive her. An 8-10 year life span for a tissue valve is more likely for someone much, much younger, like in their 30's or 40's. However, since she is in constant a-fib and there is no plan to try and convert that, I guess I'd consider mechanical at her age since coumadin is already a given.

I travelled for surgery but flew. We've had many members who have driven and have done just what you mentioned. Stop every couple of hours and let her get out and walk and stretch. Some have even been told to ride in the back seat to avoid the air bag "just in case". My local Dr. took over my care after I got home. I had a couple of bumps and he took care of them no problem, even consulting with the Mayo when needing. I didn't travel back to the Mayo to have a follow up with my surgeon. I think this pretty common if you travel. My local cardio just took over all the care once I was discharged from the hospital.

 

[Jkm7]

Cleveland tends to recommend tissue valves for patients in their sixties and up (and even younger) but seeing your Mom takes coumadin anyway, maybe not in her case.

I had my surgery at Mass General both times and my local cardio took over my care after discharge by surgeon.

Sending best wishes. Let us know in what way we can help with questions and concerns.

 

[watson524]

Thanks for the info! She initially thought she wanted a pig valve because of the coumadin and clicking but when 2 doctors said the coumadin would stay, she doesn't want to take the chance of a pig valve wearing out (her family tends to live into their 90s) plus with both doctors saying mechanical... Will be interesting to see what Cleveland says. I'm obviously nervous about the surgery but another concern is getting her to rest after. She's very active and involved and was like "what do you mean I can't drive for 4-6 weeks???!!!" Her gp was like "don't worry her body will tell her when she has to slow down"

 

[ALCapshaw2]

It sounds like you have prepared yourself well and received some good advice / experiences.

I wonder why you say her mitral valve gradients are "bad". Those numbers sound pretty good to my NON-medical-professional mind. BTW, gradients are measured in "millimeters of Mercury", abbreviated mmHg and NOT just "mm" (a linear measurement ... 1 inch is approximately 25 mm)

I'm guessing that the real concern is her regurgitation and agree that it is best to operate before the atrium becomes enlarged. As you noted, her pulmonary artery pressure seems to be a concern. The Gold Standard for evaluating Pulmonary Hypertension (PH) is a Right Heart Catheterization. If she does indeed have Pulmonary Hypertension, it would be wise to have her evaluated by a Pulmonary Hypertension Specialist since most cardiologists see few such patients and have little 'hands-on" experience treating it. IF she does indeed have PH, that may be the predominant factor in her symptoms and needs to be assessed along with her Regurgitation to determine the best Treatment Plan.

I am a bit surprised by the recommendation for a mechanical valve at her age. Cleveland Clinic is a Big Promoter of the Bovine Pericardial Tissue Valve which has the longest longevity of Tissue Valves, especially in patients over age 60. If you (and she) are still interested in the On-X Valve, the most prolific user of that valve at the Cleveland Clinic is Dr. Pettersson who is a World Class Surgeon with considerable experience doing Valve Surgery.

As Kay an others indicated, it is not uncommon for patients who travel to have all of their post-surgery exams performed by their local cardiologist. This would be a good question to pose to the Surgeon(s) she interviews as to their preference and recommendation.

She will probably need someone to be with her for the first week and maybe first 2 weeks until she begins to regain some strength and a little bit of stamina (which always comes more slowly than we would like).

'AL Capshaw'

 

[watson524]

It might be my misunderstanding of what I have read in a few places but I thought ideally, pressure on both sides of the valve should be roughly the same. A gradient of 5-10mmHg was listed as moderate stenosis and above 10mmHg was considered severe.

Not quite sure what you mean about if she has PH, that might be a predominant factor in her symptoms and needs to be assessed along with her regurg. I thought that would mostly resolve if the valve was replaced. The way it was explained, the regurg is so bad, it's making the LV pump harder to get blood forward, but it's also backing up into her lungs, causing shortness of breath when she walks up hills and such and can cause right side heart damage.

I'm now somewhat concerned about the valve material.... I'm not sure how many surgeons we'd get to meet out there, it sounded like they would just pick one and we'd meet him the nite before surgery. The key is, we want to plan for her to get at a minimum 20 years out of it and both of her local doctors didn't seem to feel a non mechanical would be good for that.

Funny, (and I'm sure it's normal).... answer a few questions, get a few more to think about

I appreciate everyone's responses.

 

[Bear72]

I agree that the CC will probably recommend a tissue valve over the mechanical. Regarding the surgeon, well that's your choice to make. When I had my surgery last year, I made that decision on my own. If you want the CC to make that call you may. To be honest, I haven't heard of any novice surgeons at the CC. In my opinion, if your mom is just having an isolated mitral replacement/repair, you may want to go with a surgeon who specializes in just that.

Driving home wasn't really that much of an issue. We stopped every couple hours and kept it moving, it wasn't that bad. In regards to a follow up appointment with the surgeon? Doubt it unless there is a problem. Everyone I have spoken to that has had surgery at the CC was told to come back in a year to meet with a staff cardiologist. I guess it depends on the case but when I was there, the surgeons were very busy in the OR.

 

[kfay]

I'm now somewhat concerned about the valve material.... I'm not sure how many surgeons we'd get to meet out there, it sounded like they would just pick one and we'd meet him the nite before surgery. The key is, we want to plan for her to get at a minimum 20 years out of it and both of her local doctors didn't seem to feel a non mechanical would be good for that.

Funny, (and I'm sure it's normal).... answer a few questions, get a few more to think about

I appreciate everyone's responses.

After your previous post about your local Dr's saying your mom would only get 8-10 years at 72 it makes me think they are not really up to date on the current tissue valves and their longevity in patients over 60 years of age. I'm sure if you state your preference for her to have a mechanical valve, they will give her one, but there are reasons that places that CC and Mayo prefer to give patients over the age of 60 tissue valves. If she reaches the age of 100, and needed a new valve at that point, they most likely would replace through a cath. I would think that your surgeon at the CC is going to more knowledgeable on the latest studies on valve longevity than your local GP or cardio.

 

[Jkm7]

Most top surgeons doing mitral valve bovine tissue replacements are saying they think in terms of 18-20 years for them but they say it could even be longer. The new generation valve they are using is superior to the previous but they have not been used for 20 years so they aren't sure if it can be even longer. They base the 20 year estimate on the earlier model which did last that long in many cases. These new valves are better and have potential for longer use.

I had bovine mitral valve implanted at Mass General 2 1/2 years ago and that was by far the very best choice for me. I did not want to deal with coumadin if I could avoid it and did not want to risk chance of a loud tick from the valve. Surgeons cannot say in advance who may have a louder vs quieter tick as it is not dependent upon body build. The most tiny petite little lady could have a very quiet valve while the barrel chested man might have a loudly ticking valve.

I don't think a good surgeon expects only 8-10 years from a mitral valve with a 72 year old patient getting the implant unless there are many other factors.

Best wishes to your Mom.

 

[ALCapshaw2]

Untreated Porcine Tissue Valves (straight from the Pig) have a short time durability record (8-12 years). The Early Bovine Pericardial Tissue Valves are reaching 20 years of service in many elderly patients. Cleveland Clinic is one of the Hospitals that is studying Catheter Placement of Tissue Valves in High Risk patients so they should be able to address the Mechanical / Tissue Tradeoffs for your elderly mother.

(Note to Jkm7 - avoiding Coumadin is NOT an option... she has been on Coumadin since 1983 as stated in the original post. From my perspective, Fear of a Loud Tick is exaggerated and unwarrented. Most mechanical valve recipients report a 'soft thump' that fades in time. A Pounding Heartbeat is sometimes reported by patients whose hearts had enlarged or whose muscles had become 'overstrengthened' due to pumping against a stenotic *native* valve for too long. This has NOTHING to do with the type of replacement valve received. )

'AL Capshaw'

 

[watson524]

Ok so they actually do something to the pig valve before they implant it in a person? I know with cow valves, it's really pericardial tissue where they make the valve leaflets, but it's not really the cow's valve.... perhaps this is the same thing? Is there fear of rejection with a porcine valve or anti rejection meds needed like say a heart transplant? It sounds like they are doing more and more aortic valve replacements through catheter but I hadn't heard about this being studied for mitral valves (though it only makes sense I suppose). Our main concern really is to only have this done once. Obviously there's no guarantees either way but....

As far as picking a surgeon, that's making me somewhat nervous. Last time, it would have been Dr. Cosgrove but he's the CEO of the place now so he's off the list... with traveling and all, we won't have an opportunity to interview them I don't believe. I mean obviously we'll meet the one before the surgery and if we weren't completely comfortable, we could obviously say no, but it makes it interesting coming from afar. The list I compiled I got from going to their website and putting in the main campus and "mitral valve replacement" in the main search box. While they all do that, I can't figure out how to find ones that specialize more in MV vs say AV replacement.

 

[Lynlw]

Yes they treat pig valves (and bovine) to help keep them from calcifying. Right NOW the tissue valves with the longest track record are the Edwards bovine pericardial, which I believe the stats in people 65 and above are close to 85% still doing great at 20 years, (The improved porcine valves haven't been around as long so who knows which will end up lasting longer)
There is no problems or meds needed for rejection for tissue valves.
As far as percutaneous replacement for tissue valves, right now there are trials for high risk Aortic valves in the US. The Melody valve for the pulmonary postion is already FDA approved for people, usually they are for people born with heart defects that already had a few replacements. They are starting to work on percutanous replacing Tricuspid valves now, so who knows what maybe available in 10-20 years. CCF has some interesting info on percutaneous Mitral repairs https://my.clevelandclinic.org/heart/percutaneous/percutaneousvalve.aspx

It will be interesting to see what CCF says about trying to do a Maze or ablation and what kind of valve they recomend.

As for choosing a surgeon at CCF I can't help you there because that was never a place we considerred taking my son,(He was bornwith heart defects and needed surgery as a baby toddler ect) but the hospitals we did use, I knew who we wanted to operate on Justin and since he had time to wait, that is who was his surgeon. I don't think you can go wrong with any surgeon they recomend for the surgery your Mom needs.

 

[watson524]

Thanks Lyn. I'll have to do some more reading up on the valves so when we do get out there, at least I'll have some education behind me. At this point there's just so many questions my head is spinning. I have started a section of a notebook that I found helpful when my dad got sick (Pancreatic Cancer) and also my aunt earlier this year. It just helps to jot questions down as you think of them and then the answers when you get them as well as stats and stuff at various points just to keep it all in one spot. I also have the latest echo report in there too.

 

[kfay]

Watson, I realize her local Dr's have not been fans of trying to cardiovert her, but have they ever even tried meds to get her out of afib? I can't just imagine just saying "oh well, she's in it and we are just going to leave her in it and not even going to try anything to get her out of it". Are you guys willing to consider a maze or have an ablation the day before her surgery? She may even have more energy than she already does if she wasn't living her life in constant a-fib. You know, the CC may put her on Amiodarone for a short course after surgery which will hopefully take her out of it as well, so again, it will be interesting to see how they will try and handle it.

 

[watson524]

The concern the local doctors have always had is that a regular irregular beat is better than getting it situated, having it go out again, and back and forth, etc. My understanding was that the maze was done WITH OHS and generally not on its own (from reading on the CC) site and it sounded like a good option, especially once I understood that they basically create scar tissue for signals to bounce from and know for other reading and talking to friends that that's how pacemakers can work, it's fairly easy to map the electrical signals in the heart so you know where they need to be redirected. The Maze sounded very promising to me but the locals seemed to think not. That doesn't mean I won't be asking out there though. I hope these folks in Cleveland are prepared for all our questions I'd love to see her be out of it permanently, knowing there's no guarantees about anything of course.

How is the ablation done? I haven't read as much about that other than that it exists and what it can do.

 

[Lynlw]

Thanks Lyn. I'll have to do some more reading up on the valves so when we do get out there, at least I'll have some education behind me. At this point there's just so many questions my head is spinning. I have started a section of a notebook that I found helpful when my dad got sick (Pancreatic Cancer) and also my aunt earlier this year. It just helps to jot questions down as you think of them and then the answers when you get them as well as stats and stuff at various points just to keep it all in one spot. I also have the latest echo report in there too.

I think Notebooks are really helpful to take notes when you are talking to the doctors and to make a list of questions you have..You should see how many pages I have on Justin in 22 years and 5 heart surgeries plus other surgeries, numerous caths and tests ect. . In the hospital, I used one to keep track of what was going on, any questions I came up with so when the doctors did their rounds I had everything written down which really helped since rounds are really early in the morning when my brain isn't fully awake yet.

 

[kfay]

I've had both, 3 ablations and a maze. They have all been effective at the time for what I have needed them for. But that is not to say that all people who have a maze get relief. However, I think I'm correct in saying that the others on here who have had one would say that they were successful.

I was not having problems with a-fib at the time 2 years ago when I had my maze done, however, a-fib is VERY common with my congenital heart condition, so my surgeon routinely does them when he does the other corrective surgery. While I have had brief periods of atrial tachy's since sugery, that's been the point, they have been very brief (15 beats most).

Ablations are procedures where they go in through the groin (usually), like a cath, and, using electical mapping, they can find the sources of rhythm problems and then "zap" them with electrical currents. Again, it is not always 100% successful, but when it is, it is great. Alot of us have these procedures done the day before our heart surgeries. I would contact CCF and inquire about these in advace for scheduling if its something that might work for your mom.

 

[watson524]

Ok thanks. I think what we might do is see when her appointment is and then I can call Dr. Hobbs' office out there and explain these additional things we want to talk about/explore. Since she will have a cath when she gets out there anyway, perhaps they can do a two for one then. She doesn't like the caths in the groin because of having to lay still for so long afterwards vs in the elbow bend area like her cardio does here but obviously, they know what's best and are trained a certain way so.... one interesting thing her cardio told her is that some at CC are now doing caths through the wrist area. WOW!!! I'm pretty sure I'd want a nice big artery to go into if it were me.

Is there harm (other than the inherent surgical risk) of doing an ablation or maze if it doesn't work after? i.e. is it that it just doesn't work or can it create other complications?

 

[kfay]

The need for a pacemaker is the biggest problem that can occur, but that can also happen with the heart surgery itself, other than the standard risk that is there with any surgical procedure.

 

[watson524]

Hmmm ok that's interesting... and wasn't something I was aware was a risk with this surgery since I was thinking it was "just" go in, take out bad valve, put in shiny new valve, check for working of valve and move on. Didn't know that might mess with electrical signals. Not that I'm going to dwell on it... everything WILL be fine. I'm going to be positive!