questions needing answering

[blessed1416]

Hi again- 15 days and counting until mitral valve replacement. Everyone (all meaning well of course) has been offering advice and telling me horror stories about their valve replacements. So, I'm wondering what you guys think. One person told me that her mv replacement led to the metal actually "chewing" into her heart. Her body rejected the mechanical valve and caused her to bleed internally and lose an enormous amount of weight and blood She changed surgeons and hospitals, within 3 months they took the mech. valve out and replaced it with a tissue valve and she's been fine now 7 mos. post op. Her body was also sensitive to coumadin. So this raised some questions: Can your body reject the mech. valve, and are there any tests prior to surgery that can be done that might indicate rejection? Also, what are the possibilities of being alergic or sensitive to coumadin?

Another question: I plan to fly to Dallas for my daughter's national cheerleading competition after Christmas. A friend who is a nurse will be on the trip with us, and casually asked me today if my cardiologist had any reservations about my flying. She said that she was concerned about the pressure in the cabin causing problems with the pressure in my lungs. Any insight? I tried calling my cardio. but he was gone for the day.

One last question; My husband is adamant about only using blood given by close relatives. My surgery coordinator assured me that all blood is so well screened now through the red cross that there shouldn't be any worry. But, my husband wants to have enough in store- just in case. So the Red Cross contacted me today and asked for 4 different donors to be at their office next week to each give one unit. Did anyone do this prior to your surgery. It will cost us out of pocket for this as insurance doesn't pay for storage of the blood or transportation. But, since my husband is so insistent, and if it will make him feel more at ease, we'll pay for it. My husband, sister, brother, and son are all same blood type as me.

Well, any input would greatly be appreciated. And, I hope you are more ready for Christmas than I am!! HO! Ho! HO! Wishing all of you well!!

 

[geebee]

I have heard of people being sensitive to coumadin but it is rare. I have not heard of a mechanical valve being rejected and I am not sure what is meant by a valve "eating into the heart". I suppose anything is possible but it does sound odd. I had to have my second OHS because I developed scar tissue that encroached on my mechanical mitral valve causing it to stick shut. Whether that was a "rejection" or not is highly questionable. However it has not happened with my St. Jude so it could have been the valve I used to have. Who really knows. All of these things are so rare that your chance of experiencing them is almost non-existent.

Blood is usually not needed during OHS these days due to the processes used. Sometimes people do need some blood post-surgery due to anemia that might develop. If your husband is that concerned, and you have people willing to donate, by all means store some just in case. It will make you feel better and there will be one less thing to stress over.

Best of luck to you.

 

[Ross]

To me, it sounds like your friend didn't want to take coumadin, so it may have been convenient to concoct a story of such proportion to deter you from getting one. I have never heard of a mechanical being rejected nor do I see how it would be possible for it to "Chew" into the heart. Simply not possible. I know of no cases of allergies to Coumadin and sensitivity is very low. You'd have to consult Al Lodwick for specific numbers or incidents.

Flying on a Commericial Airline should be just fine. People leave hospitals after OHS, get on planes and go home all the time. The cabins are pressurized to that of sea level oxygenation, so you should have no trouble.

Blood products are very well screened now. I don't think you have a worry. Honestly, you more then likely will not need any as they recycle yours and give it back to you during surgery. You may need a pint or two to top off your tanks when it's all said and done, but you should not worry about it. For myself, I liked to have blood donated just for me, but the reality is, it just doesn't happen like that. They can give blood in your name, but the chances of you receiving that donation are 0. Now if they do give blood, some hospitals will take that donation in payment of any blood you need as replacement, but your not going to get the blood that they donate.

 

[bvdr]

It is not at all uncommon not to require any blood replacement during valve surgery. There is a method used that recycles your own blood back to you and that reduces your total blood loss. I came close to needing blood a few days after surgery but my blood count stabelized so never needed any. I did not store any ahead of time because, as Ross said, the blood supply now is very safe. If the expense is tolerable to you and your husband feels strongly then at least it is one way to get your family invested in your saga.

I have a St.Jude mechanical and I think it is actually not metal but I would have to look that up to be absolutely sure. I have heard of mechanical valves on occasion "chewing" up blood cells because of increased turbulance of blood flow but not the heart per se. I think it would be physically impossible and of course only opens and shuts in response to the blood flow and pressures in the heart chambers and doesn't operate independently at all. Your description bring to mind the little pac-man of one of the early video games.

I have to admit I could feel the increased pressure in my chest when flying shortly before surgery. I also ended up with more leg edema for a few days. It would be a good idea to check with the doctor if you would consider altering your plans based on his answer. If you would go regardless then there would be no point.

 

[Nancy]

My husband has two mechanicals, and the reason he has mechanicals is that he would have rejected a tissue valve. I haven' heard of anyone rejecting a mechanical valve, since it made of inert ingredients. As far as "chewing" up the heart. well-- it's not like PacMan. It doesn't have a mouth, and unless it was so ineptly implanted that it turned inside out (which it virtually impossible), chewing up the heart doesn't sound even feasible.

Her body, however, could have had a tissue abnormality which did not hold the stitching around the sewing ring of the valve. That happens RARELY. But it could cause a leak and bleeding.

I suppose your friend could have had a problem with Coumadin, but my suspicion is that either she/he didn't take the medication carefully, or had a medical person monitoring the INR (Coumadin level) who didn't know what they were doing.

Coumadin is not a monster. My husband has been on it for 28 years. BUT, it does require that the patient take the Coumadin exactly as told to take it, and also requires that the medical person monitoring it knows what they are doing.

Unfortunately, that is not always the case.

St. Jude and other mechanicals are very safe and have a long track record.

 

[Lynlw]

Hi , I wanted to let you know about the blood, the regular donated blood, is screened and safe, actually some people believe it may be safer than having friends and family donate, only because sometimes, the friends or family may hide something that would make their blood unsafe, just because of the spot they feel they are put in. Now w/ that being said, Justin had 4 OHS and we did directed donations for one of them, and the others he got banked Blood, I felt both ways were safe for him
I think Ross may be alittle confused, because your husband is proably talking about directed donations, and THAT blood is tag w/ your name on it and as long as the until is compatable you will get the directed units, before you got banked blood. usually if you don't need it then it will be released to the general public, so it isn't wasted.There is also an added charge for directed donations
some centers also will take units as credit against the cost of the unit of blood, I know are local red Cross, doesnot charge for the unit of blood per say , But they do charge for all the testing done, so we never had to worry about getting blood units creditted to us.
Lyn

 

[Kate]

Hi!
Like you, I was amazed at some of the awful stories friends told me before my surgery. I think they are just trying to let you know they can relate to what you're going through, but it can be frightening.

For what it's worth, here's my theory regarding your friend's mechanical valve "chewing" into her heart. Endocarditis, an infection of the heart that can occur after valve replacement, is sometimes described as "eating away" at valve tissue and could result in the decision to remove the mechanical valve and replace it with a homograft, which is a type of biological valve. However, this type of infection is not limited to mechanical valves and is really quite rare so I wouldn't waste too much energy worrying about it (and this is only my guess at what happened, so take it with a grain of salt) (-: Best of luck! Kate

 

[RCB]

"friends"

"friends"

"Hi again- 15 days and counting until mitral valve replacement. Everyone (all meaning well of course) has been offering advice and telling me horror stories about their valve replacements. So, I'm wondering what you guys think. One person told me that her mv replacement led to the metal actually "chewing" into her heart. Her body rejected the mechanical valve and caused her to bleed internally and lose an enormous amount of weight and blood "

I got a great idea-why don't you invite these "friends" to VR.com so we can discuss their "horror stories". Surely, anybody with such an interesting case
would want to share it with us. I did a medline search and couldn't find a single case report of a valve with teeth "chewing" up a heart.
It is amazing to me how many people will read this thread and say to others "Ya, I read at VR.com about someone who had mechanical value and it damn near ate him up!"

 

[tobagotwo]

Some comments from the popcorn section...

Mechanical valves haven't really been metallic for years. Their surfaces are now made of pyrolytic carbon formulations, creating an entirely non-reactive surface similar to porcelain, and not really subject to rejection or immune reactions from the body.

The body's interior is an incredibly corrosive environment, and anything that can be chemically reduced eventually is. The previous poster, RCB had one of the most successful of the exposed-metal valves, where a cage was made from surgical stainless steel to house a ball that closed the valve. (RCB will correct me if I have missed the mark on that.) Even that had been partially dissolved over its many years of use. However, the new pyrolytic carbon material will outlast its owner by perhaps a century, and won't corrode or break down in the heart's environment, or be damaged by its opening-closing action. Any type of mechanical failure in a carbon-based valve is extremely rare.

If your friend actually had a mechanical valve implanted a year or so ago that caused all of the problems described, I can think of three scenarios that could fit her description. Some lean more to aortic replacement issues, but you don't state whether these rather abusive friends had aortic or mitral surgery.

One would be that her replacement was caused by a connective tissue disorder or tissue damaged by endocarditis, and the mechanical just couldn't be seated properly in the damaged tissue and leaked at the suture points. This might create added damage to the tissue there. A stentless tissue valve such as the Toronto or the Freestyle might have been deemed an appropriate replacement, because the stitching is done in a different way, and the pressure is spread over a larger area.

The second possibility is based on the fact that surgeons like to implant as large a valve as possible, to support the greatest amount of bloodflow with the least pressure. If the valve he put in was too large for her heart, it could have been rubbing agains the sides of the implantation area as it opened and closed, creating "chewing" damage similar to that described. It would not have been the valve's fault, but such a mismatched valve would have to be replaced. It would have been the surgeon's error, possibly through inexperience.

The third is that sometimes the aortic root begins to enlarge or misshapen, due to connective tissue problems, such as may be found in bicuspid valve owners. In those cases, the valve can be torqued to one side by the misshapened root, and create a chewing action on the wall. The valve would have to be replaced, and the root stabilized. Again, it would be the surgeon overlooking the possibility of a developing root problem, and not the valve's fault.

Any of these scenarios would be quite unusual, and all highlight the importance of finding a surgeon who has a great deal of experience (let's say, does over 100 of your type of OHS each year in his practice), and a hospital that deals with this type of surgery often. The inexperienced tend to overlook things, be too conservative, or be too daring.

In an airplane, oxygen and pressure levels are lower than at sea level. As such, most people wind up with a lower blood oxygen saturation level during a flight. It isn't harmful to the general population, but could cause dyspnea (breathing discomfort) in someone who has strongly symptomatic pulmonary or heart disease, including valvular heart disease. If you have congestive heart failure (CHF) or other heart or lung problems concommittant with the valve problem, you should ask your cardiologist if you should be concerned about the flight. Chances are very high that you will be just fine, and experience at worst a minor headache.

I flew to Cozumel (a two-hop flight, NY to Houston, Houston to Cozumel) and back, and went deep snorkelling there shortly before my surgery, without any undue discomfort. The cardiologist did disapprove, but only of the snorkelling.

You probably won't need blood at all during the operation. That is by far the most common outcome. It's not very common, but in some cases, blood is used after the surgery, due to a platelet count drop. If you have four relatives with the right blood type, fine, but it's really not much more reliable than the general supply, which is carefully screened. Who knows if "Uncle Ernie" has been having a secret affair for the last six years? He's certainly not going to spill the beans now, to avoid giving blood for his neice. I'm sure he thinks his blood is fine...

Best wishes,