Consult with 2nd surgeon

[catwoman]

I have posted another item under Pre-Surgery about John's visit yesterday to Dr. Ryan in Dallas. I didn't want to get on my soap box there, but I am here.

I had suspected that Ryan is a tissue man, and sure enough, he is. He said his backup plan, if a repair doesn't work, would be a tissue valve. Was surprised that John would consider a mechanical, mentioned that many people with mechanicals hate them, hate taking Coumadin, yaddayaddayadda. Described the negatives of being on Coumadin.

I told him I had a St. Jude (he asked why my MV wasn't repaired, told him a repair didn't work) and test my INR at home and adjust my dosage and that, for me, being on warfarin hasn't changed my life, that I eat whatever I want & have the same activities as before.

He said the risks of failure with mechanicals are:
pannus overgrowth
clot formation
infection
(He didn't mention bleeding issues.)

I was told that if I keep my INR in range and take antibiotics as needed, I wouldn't have problems with my mechanical. (I doubt that the pannus problem is a big risk.)

When Dr. Ryan said that tissue valves do wear out -- at 12-15 years, I said I'd rather deal with warfarin than going through surgery again, going through several months of total recovery and paying co-pays and deductibles again, when I could have most likely avoided it with a mechanical.

Maybe I am "smarter than the average bear," as a dear friend used to joke, but ... Coumadin management is not rocket science.

Now, I will get off my soapbox.

 

[Ross]

What gets me is that it's the medical pro's giving Coumadin a bad name with their misinformation and it's really disturbing that they are willing to put people at further surgical risk with multiple tissue reops. It's as if they've convinced themselves that tissue is safer and it's just not so.

 

[catwoman]

Why don't we invent a magic wand so that no surgery is needed at all?

 

[Marty]

I'm happy my surgeons opted for St. Jude mechanical when I was 72. I'm 81 now and feel great. I'm happy not to look forward to a second operation at this age. According to my surgeon, the tissue valves are getting better and better. When he did me, they were supposed to last ten years or so, but he said he had some fail at two years!I'd like to know if they still have some early failures.

 

[Nancy]

You'll get no arguments from me, Marsha. Joe lived a long life with overwhelming medical problems, and in the end passed away from something which had nothing to do with his mechanical valves. It had to do with his rheumatic heart disease, sure, but I was with him to the end, and his heart was steady and true.

He had enough problems. He wouldn't have lived through another heart surgery, even if it were done several years ago.

 

[Karlynn]

So what we have is a doctor who "knows his stuff" and is giving you and John advice on valve selection that is based on biased information based, most likely, on old Coumadin myth and information and the problems he sees in his practice. (People don't go to him if they're doing fine.) You have the advantage of your own personal knowledge and experience and of others here. Imagine those who go in to Dr. Ryan, hear that mechanical valves are, basically, a nightmare and walk out believing that must be the truth because this doctor is a well-respected surgeon.

I don't care what type of valve people choose. It doesn't impact my life at all and at over 15 years post op, it isn't connected to my own concerns over whether I chose the right valve type. I do care that people that come here base their decision on correct information and not myth and old information. Unfortunately, many in the medical field are still giving out a lot of incorrect information.

 

[Ross]

Unfortunately, many in the medical field are still giving out a lot of incorrect information.

And that is the most disturbing of all!

 

[lance]

Two thumbs up, way up for Dr. Ryan

Two thumbs up, way up for Dr. Ryan

Don't I wish I'd had a Dr. Ryan in my corner prior to valve replacement--you bet.

The very first myth about ACT came from my surgeon. I hate to think how many patients were told that myth--probably a lot.

I agree that ACT management is not rocket science it can be learned and understood as much as one can considering warfarin is involved

Patients deserve to be fully appraised when valve choice is being discussed.
Patients need to know all the pro's and cons before a decision is made.
Patients have been and will continue to be mis-informed about ACT by the medical profession.

Tissue valves have to be replaced because they won't last a lifetime--ACT does.

Now I'm off my soapbox.

 

[Karlynn]

Lance, I'm really sorry you had a doctor who didn't fill you in on ACT as much as he should have. Unfortunately, what we see way more often here are doctors who lean heavily on the bad side of ACT and down-play the issues of valve deterioration and additional surgeries. (Probably because they're surgeons. )

I came to the opinion a while ago that the worst thing about ACT is having to rely on a medical community that, over-all, doesn't keep current on information. When we have a nurse at CCF tell one of our members that they now have to use an electric razor (and CCF is the purported Super Bowl of Valve Replacement hospitals). And we have hospitals with Coumdin Restricted diets.

All we need to do is read through the problems posted on the anti-coagulation forum and see that well over half of the problems are either due to the fact that the warfarin manager didn't have a clue what do to, or turned a problem into a big problem because of mismanagement. It truly is a more valid reason, in my opinion, to consider tissue, than a reason like "I lead an active life".

 

[bvdr]

I don't know what I would choose if I had the choice today. I wasn't really given the choice to begin with because of being an a-fibber and needing to be on it for that. But if that wasn't the issue I think I would actually choose tissue today. I never thought I would say those words but it is just complicating my life right now. In the last year I've had to come off it 3 times for epidural type stuff and next week I have to do it again in order to have a mylegram next Friday. I'm on the surgeons calander for a May eleventh (still in pencil) surgery on my c-spine and that may mean being off warfarin for 2 weeks per the neurosurgeon. He says it is a big surgery. I'm not even thinking about the surgery part but rather the ramifications of being off warfarin for two weeks .....and no Lovenox post-surgery either.

I have sent my MRI results to a center which specializes in less invasive procedures of the spine but I haven't heard back from them yet. I have to do something since I'm not only in pain but loosing strength and feeling in my left arm. But even with that, I find myself thinking about how much do I really need use of that arm? How much pain can I learn to tolerate?

What would you all do? Like I said, I'm just penciled in. The MRI from a couple of weeks ago showed things to have gotten worse. It is not the type of problem that is helped by PT. I'm maxed out on medicine and tried chiropractic care for several weeks. I've spent a considerable amount of time on steroids in the last few months and they do help until I stop. Do you see the fix I'm in?

 

[Ross]

Don't I wish I'd had a Dr. Ryan in my corner prior to valve replacement--you bet.

The very first myth about ACT came from my surgeon. I hate to think how many patients were told that myth--probably a lot.

I agree that ACT management is not rocket science it can be learned and understood as much as one can considering warfarin is involved

Patients deserve to be fully appraised when valve choice is being discussed.
Patients need to know all the pro's and cons before a decision is made.
Patients have been and will continue to be mis-informed about ACT by the medical profession.

Tissue valves have to be replaced because they won't last a lifetime--ACT does.

Now I'm off my soapbox.

Not to hijack this thread but Lance, repeatedly I've seen you down on Coumadin. I've asked you before why and have never yet received a response. What is so evil or bad about it that it's got your dander up?

When it came time for mine to be replaced, I was offered all and choose mechanical. No way in hell do I ever want to have to go through surgery again after being through it twice. Matter of fact, I'll never survive a 3rd and that's been verified. I have a lung disease in which I bleed in my lungs. Coumadin could well be what allows me to drown in my own blood at some point, but I'll take that risk and have been advised also, over another surgery.

 

[Karlynn]

Betty, why did your surgeon say you need to be off it for 2 weeks prior? It won't take 2 weeks to get the Coumadin out of your system. Before the end of week 1 it will be long gone. Since you said no Lovenox post-surgery, does this mean you will be bridging with Lovenox pre-surgery? If he's having you go unbridged prior then I'd say what you have is a surgeon who is more concerned about bleeding than a stroke.

Can I suggest that you email or PM WarrenR. He has done so much extensive research he may know where to lead you for details on protocol for all the things you've had done and are having done.

I'm so sorry for your predicament. It seems you've had one thing after the other crop up since your replacement. Had you had a crystal ball to know that all this was going to take place, I think everyone here would have recommended a tissue valve for you. God bless and you are in my prayers.

 

[MaryC]

Marsha,
I did not get a tissue valve bias from Dr Ryan on my consultation with him. I am still very grateful for Dr Ryan. Even beyond the mitral valve repair, because he helped me with my recent heart rhythm issue when I was receiving poor care by my cardiologist! I got copies of my medical records last week and was reading the letter from my former cardiologist to my GP. In the letter he stated when he examined me he heard no murmber whatsoever and commented it was a beautiful surgery by Dr Ryan. I am sure Dr Ryan would use whatever valve type your husband preferred.

 

[catwoman]

Mary:

I detected a tissue bias, but as long as a surgeon puts in what the patient requests, that's fine with me. We discussed tissue vs. mechanical, and Dr. Ryan understood our reasons. Most surgeons probably don't have a prospective patient walk in with the spouse having a mechanical.

My point in starting this thread was that if medical professionals better understood anticoagulation therapy, if patients were compliant, if home testing were more accepted, then I think warfarin wouldn't be the big bad wolf many people think it is.

Granted, I haven't had to have surgery since my MVR so I haven't had to deal with going off warfarin & heparin or Lovenox. This surgery will be John's first surgery since a tonsillectomy as a child (I'm discounting 2 office procedures in the last 27 years). His arteries are clear, he's never even had a cavity, no dental surgery will probably ever be needed. Only surgery I can foresee is for cataracts.

John & I talked about ACT at dinner tonight. He's comfortable with the possibility of getting a mechanical and being on warfarin.

 

[Bridgette]

Hi Marsha

I have an ON-x mechanical valve in the mitral position. When I met the surgeon prior to my op, I brought up the possibility of a tissue valve and he said no he wouldn't be prepared to give me one at my age (43) as they only last around 12 years or so, probably less in younger people, and definitely wear out quicker in the mitral position.

Having been on Warfarin (although not continuously) before my op, ACT didn't really faze me - what would freak me out is the thought of having another OHS in 12 years

I'm pretty happy with my valve, and the only med I take is Warfarin and 100mg Aspirin daily.
Hopefully that's it for me as far as heart surgeries go, although I do know there are no guarantees.
I hope things go well for your husband.

Bridgette

 

[MaryC]

From what I have read on this site and other sites, there is still not a lot of information as to how long the new tissue valve will last. While checking out Presby Dallas hospital, where I was to have my surgery in February, I began visiting with a woman in the waiting room. She said she was there with her 87 year old father. I told her about my upcoming mitral valve surgery and she said her father had gotten a bovine tissue valve replacement at the Cleveland Clinic 16 years ago when he was 70. She said the valve (& he) were still going strong.

 

[Karlynn]

Mary, you're right. Tissue valve longevity due to age and new advancements is somewhat unpredictable these days. I'm not surprised that a tissue valve was used on a 70 year old. One thing they do know is that the younger you are, the less time a tissue valve lasts. It has to do with body chemistry and the position of the valve being replaced. A 40 year old getting a tissue valve is definitely facing at least 1 more OHS, 2 if they live a long life. A 70 year old getting one will hopefully last until the Pearly Gates.

It's all just trying to make your best guess as to what each type will mean to your life.

 

[Nancy]

The problem, as I see it with putting tissue valves in older patients is that no one on the planet knows when anyone will die. Having to undergo a tissue valve replacement at age 80-85 or more and possibly, when in a more compromised condition, is a scary thought.

It would be a terrible thing to get to that age, find out you need a valve replacement, and no one will touch you with a ten foot pole because you have other problems going on as well. That would leave the person with a long, slow. lingering and deteriorating situation with no hope of help.

If a mechanical were used in the first place, the odds of that happening are greatly reduced.

The problems caused by a malfunctioning valve of long term can wreak havoc on the rest of the body systems.

 

[bvdr]

Mary:

I detected a tissue bias, but as long as a surgeon puts in what the patient requests, that's fine with me. We discussed tissue vs. mechanical, and Dr. Ryan understood our reasons. Most surgeons probably don't have a prospective patient walk in with the spouse having a mechanical.

My point in starting this thread was that if medical professionals better understood anticoagulation therapy, if patients were compliant, if home testing were more accepted, then I think warfarin wouldn't be the big bad wolf many people think it is.

Granted, I haven't had to have surgery since my MVR so I haven't had to deal with going off warfarin & heparin or Lovenox. This surgery will be John's first surgery since a tonsillectomy as a child (I'm discounting 2 office procedures in the last 27 years). His arteries are clear, he's never even had a cavity, no dental surgery will probably ever be needed. Only surgery I can foresee is for cataracts.

John & I talked about ACT at dinner tonight. He's comfortable with the possibility of getting a mechanical and being on warfarin.

Marsha, you are so right about the medical community as a whole being sadly uninformed or even misinformed about ACT. Sometimes I think that is half of the problem with being on it. Karlynn mentioned that no one has a crystal ball to view our medical future and we just have to make our choices on what we know at the time. I know that what I am dealing with is not a common predicament. I know Giselle replaced her mechanical with a tissue because of recurrent subdural bleeding that was not caused by her warfarin but did made the situation worse. If someone does have a history of problems in those areas they need to be taken into account when making a valve choice.

What the game plan is for me is to go off coumadin 5 days before surgery, be admitted to the hospital for IV heparin when I'm at an INR of 2.0 and have that stopped several hours before surgery. When a neurosurgeon is concerned about post-op bleeding it isn't because it inconveniences him but that bleeding in that area will have catastrophic effects for the patient.

As John makes his choice, just have him also consider spinal issues. I really hope a repair is possible and then none of this will matter.

How is he doing with all this?

 

[Mary]

I was considering this subject last night.
I decided that when the time comes that the cardiologist feels I'm going to need my valve replaced, I'm going to ask alot of questions about who handles their anticoagulation monitoring. I'm also going to find out how easily I can, or can't, acquire my own home monitoring unit. If I'm satisfied that anticoagulation wouldn't be a hassle, (and that would be the exception in all the myriad considerations surrounding valve replacement ) I might consider a mechanical valve.
But last night, after spending a portion of the day at my own doctor's appointment and then the evening with a son who underwent an appendectomy at 11pm, I'm darned glad I've got a tissue valve.
I really don't want to deal with hospitals, either as a patient or with a loved one, more than is absolutely necessary. And I'm sure they feel the same!