2nd Surgery - Mechanical Valve Replacement / Repair Questions

[Info4Mom]

Hello,

My name is Sean and I am here to hopefully find some information to help my mother. It's a bit of a long story, so here goes:

8 years ago my mom was diagnosed with a congenital defect of her aortic valve. It was bicuspid instead of the proper tricuspid arrangement. At the time, Mom was 64 years old. She had noticed a pronounced shortness of breath while trying to do routine activities and after a heart catheterization and TE, the doctors decided that she needed surgery to correct this problem. The whole process happened very quickly and doctors at Lancaster Regional Medical Center (in Pennsylvania) seemed to have a very keen sense of urgency to replace her aortic valve. Mom made the decision to go with a mechanical valve (I do not know the model) and the surgery was scheduled for just a few days later. The surgery did not go smoothly and what was supposed to be a 90 minute procedure quickly became a 4 hour ordeal. At some point during the surgery, the left side of her heart stopped functioning properly and required an emergency double bypass. She came through it, but it was very touch and go and she remained in the ICU for sometime. Her recovery process was very slow. Since the surgery she has routinely struggled with keeping her Coumadin levels within range and has developed diabetes. The valve has leaked ever since it was installed and that leak has increased as time has gone on. Now, routine activities like walking up 1 flight of stairs can lead to a pronounced shortness of breath.

In February, she went in for a check-up and it was discovered that she was having a high level of PVC's, literally dozens per minute. Again, she was catheterized and had an EEG. The surgeons (this time at Lancaster General Hospital), were convinced that a blockage was to blame and that she would again require surgery. No blockages were found, but she developed a hematoma at the site of her catheterization and almost bled out just a few hours before her scheduled discharge from the hospital. The doctors rushed her to surgery to repair a tear in one of her blood vessels and she was in the hospital for a total of 2.5 weeks.

Now, another doctor has apparently given her some hard facts to deal with and think about. With the way her heart valve is leaking, it is clear that outside of some unforeseen catastrophe, it will be her cause of death. As far as I know, no one can tell her if its weeks, months, or years, though. The surgeons at Lancaster General were not certain that my mom is a viable candidate for any sort of repair/replacement surgery due to her overall state of health. She weighs only about 100lbs and has what I would classify as a pretty weak immune system (she gets sick quite often). Couple that with diabetes (type II) and it makes people a bit nervous. Her new doctor has suggested that she get a second opinion on whether or not surgery is an option for her at a more well known cardiac center, such as Johns Hopkins or Penn Medical.

My question for the boards is this, does anyone here have experience with 2nd valve surgeries for repair/replacement of a mechanical valve. If so, what were they like? Second, has anyone had experience with either of the two hospitals listed above and what was that experience like. Any information you could provide would be greatly appreciated. Thanks!

 

[Ovie]

I'm kind of shocked at her age they went with a mechanical valve. This is quite the situation your mother AND your family seems to be in. I'm new to the valve world as I just had my first put in 2 weeks ago, so I can't offer alot of information personally. However you've come to the right place and hope you find the answers you're looking for. Your mother and family will be in my thoughts and I'll be pulling for her. Good luck to you!

 

[Fundy]

It seems strange that the mechanical valve itself would be leaking, it would seem more likely that if many of the sutures let go a significant leak might take place. i'd think. Usually the 2nd operation has the same risk level of the first. Did they say she was high risk for her first replacement, as it seems to be what they are saying this time; that she may be too high risk to have the surgery.

 

[markp66]

First of all sorry to hear about what your mum has gone through.
I've never heard of a 90 minute heart valve replacement op. IF it's a mechanical valve you are looking at 3-4 hours on the operating table. This was completely normal.
Mechanical heart valves very rarely leak unless it's a post op leak or from an infection. From what my surgeon said, sutures coming loose is very rare. This leak could have potentially been there from the start and it may have gradually got worse.
Mechanical heart valves are built to last for 200 years+. However, as many members here know there are a variety of reasons for replacement- infection, pannus, thrombus (all relatively rare but not unusual)
So your mum is 72.. A redo op would not be entirely out of the question. Although slightly more risky due to older age and scar tissue MANY people have had multiple heart surgeries. A tissue valve could be inserted which would be far less risk at her age (not so much the op but post op) and can last a long time- 15-25 years approx. If she is on warfarin for anything else such as a fib then a mech valve would be sensible.

 

[epstns]

I would agree that a second opinion is in order, especially if your mom is in stable condition right now. I've not used them, but I have heard that Cleveland Clinic (the top ranked heart surgery hospital in the country) has a service in which you have the patient's records and test files sent to the Cleveland Clinic and they evaluate the situation and offer a complete second opinion without the patient needing to go to Cleveland. They, along with a few other facilities, are the premier centers specializing in high-risk patients. If anyone can figure it out and take care of it, they can.

I have no connection to Cleveland Clinic. I have, however, read a lot about them and have met numerous others who had unique situations that were resolved there.

 

[Lynlw]

hi, Sorry to hear your Mom has been going thru such a rough time. my son has had 6 Ohs and a fEw other surgeries. he had most of his surgeries at CHOP so many of his doctors are also on staff at HUP next door. I would recommend them for complex surgeries and REDOs. I would call the heart surgery center, chances are they can have you have her reports and copies of the cath etc sent to them and they can give you their opinion from them, but since you,re so close it would probably be better to see them in person after they reviewed everything.

 

[ElectLive]

Sean - Hello. So sorry to hear of your mother's problems. While it sounds like there are more than a few health issues making the situation more difficult than usual, the very best heart centers out there (Cleveland Clinic and Mayo, among other) are well used to this and should be able to offer more hope and reassurance. I'm not familiar with the two you mention but certainly seeking out a higher level of second opinion could make a difference. One other thing I wanted to mention - how long has your mother been known to be Type II diabetic? I'd suggest that she follow-up aggressively with an endocrinologist to ensure that the treatment of this condition is best case - perhaps even to ask if she should be managed more like a Type 1 diabetic. While all diabetics are inherently more at risk for heart related complications, if the condition is well controlled it can make a very big difference in minimizing risk. My surgeon (who has over 35 years experience with all kinds of heart patients) told me that 1/3 of his patients are diabetic so it is very common and just another factor that can be dealt with.

 

[Info4Mom]

Many Thanks!

Many Thanks!

First, many thanks for all of your kind words and thoughts for my mom. I appreciate it and I know she does too. I will try to respond to all of your questions/comments in order:

@Ovie: My mom was given the choice of a mechanical valve or a tissue valve, but the circumstances of her first surgery were a little less than desirable. She was told that she needed to have the surgery right away and given very little time to think about the implications/benefits of one valve type over the other. I don't believe she would make the same choice if she had that decision to do over

@Fundy/MarkP: Right now the source of the leak is unclear. However, her doctor has stated that in order to actually determine the source of the leak would require OHS. Does that sound right?

@epstns/Lynlw: Thanks for the information. I am going to see if we can request my mom's charts and files for review.

@ElectLive: My mom's diabetes diagnosis came after her 1st surgery, probably about 5 or 6 years ago at this point. She manages her blood sugar through medication, but I cannot say for certain which one she is currently taking (possibly Metformin?)

Our next step will be to reach out to a few different hospitals and find out the best people to talk to. We also have to see what portion of this sort of procedure would be covered by her insurance, as sadly, that may also be an influence for her.

Thanks again all, I will post our findings and updates in this thread!

 

[Sarah_Louise]

Thinking of you all
Love Sarah xxxx

 

[Info4Mom]

Hello ALL,

Again, many thanks for your kind words, encouragement and advice. Since I last posted my Mom has been given a 2nd opinion from a cardiologist and that opinion is that she definitely needs to look at a surgical option within the next 3 months. This opinion came from Dr. Susan Brozena at Penn Medicine. Her heart capacity is greatly diminished (I believe she is operating between 30-35% right now). So we are now looking at surgical options. Currently, her films are with Dr. Y. Joseph Woo to determine if she may be a candidate for robotic surgery (this is doubtful, but we want to exhaust our options outside of OHS first). I know that Dr. Acker and some of the other physicians at U of Penn are highly recommended. Has anyone had any experience with the Dr's at the Penn State Hershey Heart and Vascular Center? I saw Dr. Pae mentioned positively in a post from several years ago.

While the University of Penn is great, surgery in Philadelphia would be difficult. I live in New York and have no other siblings, so the reality is that while I can be there for the surgery and a few days of recovery, the full recovery process will have to be manned on a day to day basis by my father. As he is not without his own health issues, the 20 minute trip to Hershey would be far easier on his own health than the relocation to Philadelphia for several weeks.

Again, any help/guidance from the members of this forum would be appreciated. Thank you so much!

Sean

 

[Bill B]

I'm glad to see your mom is getting more expert advice on what should be done. I hope it all works out well for her and that you can work something out to handle the recovery period.

Oh, I did want to add that I don't think there is any good reason to question your mom's choice of a mechanical valve at age 64. If your mom was fairly healthy (other than her valve problem) at the time of her valve surgery, a mechanical valve is quite appropriate and is in fact the general recommendation. Some literature supports better survival with mechanical valves in otherwise healthy patients.
http://billsworkshop.com/Some_AVR_lit/risk_corrected_analysis_of_bio_v_mech.pdf

Also, it would have no bearing on potential for leakage. If anything, a biologic valve is far more likely to leak from leaflet deterioration than a mechanical valve.

So, her choice is not anything I would second guess or consider as a factor in her current problems.

 

[neil]

hi sean sorry you mom is having trouble with her mech valve, it goes to show theres no quarantee in any valve,am sure the docs are on her case now and will resolve the problem,have to disagree bill at 64 a mech is not the general recommendation,although it would not be advised not to have one,if that makes sense

 

[jpattillo]

FYI, my mechanical AVR was right or a little under 2 hours.

 

[Bill B]

hi sean sorry you mom is having trouble with her mech valve, it goes to show theres no quarantee in any valve,am sure the docs are on her case now and will resolve the problem,have to disagree bill at 64 a mech is not the general recommendation,although it would not be advised not to have one,if that makes sense

Disagree all you want but 65 is the official cut-off in otherwise healthy patients:
http://circ.ahajournals.org/content/118/15/e523.full.pdf
(page e618)
Although a number of good surgeons will recommend tissue valves in younger patients, that does not make Mom's choice somehow incorrect or even surprising. My surgeon, rather highly respected in the field, was very clear that I was too young (at 61) and in too good health for a tissue valve. The latter issue, health rather than age, was in fact recently argued to be the most important variable in determining valve choice.
http://billsworkshop.com/Some_AVR_lit/risk_corrected_analysis_of_bio_v_mech.pdf
Anyway, we all agree Mom needs careful evaluation at a major heart center, and I'm glad to see she is getting that.

 

[neil]

sorry bill absol rubbish, yes one paper and one surgeon might say that but to generalise is wrong, yes your surgeon might be well respected but so is mine and he highly recommended tissue and hes one of the best in england,what i am saying is everbody has got there opinion but to say yours is right and everbody else is wrong? have you never heard of person centred care and treatment?

 

[neil]

Clinician Update
Choice of Prosthetic Heart Valve in Today’s Practice
Reida El Oakley, MD, FRCS; Peter Kleine, MD, PhD; David S. Bach, MD
+ Author Affiliations

From the Department of Surgery, Prince Sultan Cardiac Centre, Riyad, Saudi Arabia (R.E.O.); Department of Surgery, Section of Cardiac Surgery, J.W. Goethe University, Frankfurt am Main, Germany (P.K.); and Department of Medicine, Division of Cardiovascular Medicine, University of Michigan, Ann Arbor (D.S.B.).
Correspondence to Reida El Oakley, MD, FRCS, Consultant Cardiac Surgeon, Prince Sultan Cardiac Centre, PO Box 99911, Riyad 11625, Saudi Arabia. E-mail [email protected]
In this update, current guidelines addressing prosthesis selection published by the American College of Cardiology/American Heart Association (ACC/AHA) and the European Society of Cardiology (ESC) are discussed, along with additional data that affect choices in valve prostheses. The case of a 50-year-old man undergoing aortic valve replacement is used to address anticipated operative mortality, risk of reoperation, and valve-related morbidity and mortality. The apparent advantages associated with the use of a bioprosthesis even in a relatively young patient help to explain current clinical trends toward the increasing use of tissue valves. We also provide a simplified algorithm that may be used to facilitate the choice of valve procedure in patients with heart valve disease. see what i mean anybody can find some paper which supports their theory doesnt mean to say its right or wrong

 

[Lily]

Hi Sean - Sorry. Really a predicament. I think someone here commented that the valve could be leaking because of the sutures. Following tests, have her doctors discovered 'why' her valve is leaking? With bicuspid valves, sometimes the surrounding aortic tissue is thin. There might be a record from pathology from her surrounding aortic tissue following her valve replacement surgery. If so, the results might be important to a heart surgeon who is experienced with bicuspid situations. If possible, it might not hurt for her to consult with more than one heart surgeon. The answers you need may eventually become clear. Best wishes to you all

 

[clfhangr]

Sean,
Just found your post and thought I could help with some of the outstanding questions. I am 4 weeks out on my 2nd aortic valve replacement with this time it being a full root replacement as well.
So here is my story.
Went in for my yearly in April and they found an aneurysm in my ascending aorta so I was advised to look at it every 6 months and see what happens with the sized. Well to make a long story short I tend to not mess around with my health since I am a kidney transplant patient and have a family of 6 to take care of. I immediately got a hold of my surgeon and went and saw him to get his opinion as well. After a ct scan and a heart cath my surgeon and I decided to just take care of the issue now with my health being stable at the time. My surgeon also found a murmur as well at the time of my initial consult and the valve showed slight leakage.

So here are some answers that may help you that pertained to me.

As to the leakage it was determined that the size of the aneurysm which was right on top of the valve in the root was possible causing the valve to pull away from the aortic wall and leakage to occur. At the time of surgery that was confirmed.
In your mom's case with her heart function being compromised I didn't see any mention of heart failure but suspect that somewhere a doc has noted that and with right side heart failure the heart enlarges and can cause the same issue that I had with the valve pulling away. I would ask that question maybe??

There are many good medical centers out there and it sounds like you are on your way to determining where you are going to get this addressed.
My other opinion is that you can never have too many 2nd, 3rd, 4th opinions.
Find the center you are comfortable with and one that can maybe offer means of support that both you and your mother will need during recovery. I am an advocate of the Mayo clinic for that reason alone but I was down there for close to 5 months 14 years ago with my kidney transplant.

The other thing that I see is the second guessing of the first valve replacement. Well that is done and over with and you are here now so it is time to move ahead and deal with the situation at hand. What if's are a killer for esteem and can wear on the strongest person. It seems to me once you find the center you will work with the game plan will more than likely be to stabilize your mom and get her as strong as possible for the surgery if time permits. Once this is done and the surgery takes place I can also answer a couple questions about a redo if need be. Risks do increase with a 2nd and 3rd.... surgery but with a good team behind you they can be overcome. I am proof of that as I had a huge amount of scar tissue from my first valve replacement as my aorta blew out when they started my heart again and they had to do some major reinforcement of it. My surgeon said it looked like a bomb had gone off where all the scar tissue was. But he was prepared for that and handled it and here I am. I can say that this go around has been a little bit tougher than the first as this surgery was a tougher surgery with some renal issues thrown in as well. But all I can do is handle it one day at a time and put the rest in God's hands. I am doing well at this point.

If you have any specific question about the redo operation I would be more than happy to try and answer them for you if I can.

God bless both you and your mom,
Keith

 

[Bill B]

sorry bill absol rubbish, yes one paper and one surgeon might say that but to generalise is wrong, yes your surgeon might be well respected but so is mine and he highly recommended tissue and hes one of the best in england,what i am saying is everbody has got there opinion but to say yours is right and everbody else is wrong? have you never heard of person centred care and treatment?

That's not one paper - that's a consensus document. If you go back through the literature over decades, 65 has been the traditional, albeit somewhat arbitrary, cut-off. I'm, in fact, not in agreement with that cut-off, but that's what it has been. A tissue valve or a mechanical valve at whatever age is not necessarily wrong or right. I'm not saying that at all. I'm not saying everybody else is wrong. This is not a tissue versus mechanical narrow-minded argument. I was just pointing out that those who are surprised that Sean's mom got a mechanical valve should not be surprised or somehow imply it was a bad choice or think that is responsible for her current state and that a tissue valve would have been more appropriate. She got what the American Heart Association and American College of Cardiology Task Force recommended in their latest guidelines. So, it's no great shock to me. Had she gotten a tissue valve, it would be no great shock either. I'm saying it's irrelevant and not surprising. That's all. To call it rubbish seems like an over-reaction.

 

[Lynlw]

Hello ALL,

Again, many thanks for your kind words, encouragement and advice. Since I last posted my Mom has been given a 2nd opinion from a cardiologist and that opinion is that she definitely needs to look at a surgical option within the next 3 months. This opinion came from Dr. Susan Brozena at Penn Medicine. Her heart capacity is greatly diminished (I believe she is operating between 30-35% right now). So we are now looking at surgical options. Currently, her films are with Dr. Y. Joseph Woo to determine if she may be a candidate for robotic surgery (this is doubtful, but we want to exhaust our options outside of OHS first). I know that Dr. Acker and some of the other physicians at U of Penn are highly recommended. Has anyone had any experience with the Dr's at the Penn State Hershey Heart and Vascular Center? I saw Dr. Pae mentioned positively in a post from several years ago.

While the University of Penn is great, surgery in Philadelphia would be difficult. I live in New York and have no other siblings, so the reality is that while I can be there for the surgery and a few days of recovery, the full recovery process will have to be manned on a day to day basis by my father. As he is not without his own health issues, the 20 minute trip to Hershey would be far easier on his own health than the relocation to Philadelphia for several weeks.

Again, any help/guidance from the members of this forum would be appreciated. Thank you so much!

Sean

Sean, Sounds like you are getting alot of good answers We live in South Jersey, so know a little about the area and my son has had most of his heart surgeries at CHOP next door to HUP and most of his docs are on staff both hospitals even tho the hospitals are not part of the same systems. I've heard some good things about Hershey, BUT If I was deciding between the 2 for a more complex surgery/REDO, I'd definately go to HUP, They are one of the best in the nation.

I know it is possible anything can happen, and it is always nice to be closer to home, but unless there were big problems, I can't see why your parents would have to be in Philly for weeks if she had her surgery at Penn. Hopefully she'd be home in a week or so and then would only have to go for post op check up, if possible. Since your father has some health issues, if it would be hard for him to help her the first week or so she was home, you might want to look into a home health aid which is something I would start working on as soon as you have a surgery date if it is something you think they would need.