Difficulty Regulating Bloodflow since AVR

[Julianne]

A dear friend of mine had AVR last February. He has made some really good progress, but they are having a very difficult time getting his new valve regulated. He relates feeling like he is on a roller coaster... on day he feels great and the next he is unbalanced and fatigued and was told it was something to do with oxygen and bloodflow they can't seem to get regulated. He has a St. Jude Mechanical. Has anyone experienced this ..especially 8 mos post surgery?

Thank you so much....

Julianne

[Nancy]

Have they actually given a name to his condition?

I can't imagine what it could be. I know that before closing, all the heart "plumbing" is checked out thoroughly with all sorts of tests, since this is the most important aspect of the surgery, making sure all is working well and flowing well, and the pressures are where they are supposed to be. I don't believe any good surgeon would close unless things were going properly.

Oxygen levels can be low for a variety of reasons, and it has to be checked out. Fatigue is also very common for a long time after this kind of surgery. There are also good days and bad days and they go on for a time.

It is also possible to have various arrhythmias, atrial fibrillation and atrial flutter are a couple of them, and they can sap your strength.

Has he had any tests to determine what it is? What were those tests and what did they find?

See if you can find out more details.

[Julianne]

I am really at quite a loss. The friend lives in another state so all the information I have is what he understands and tells me. I do know that when he feels well he has a tendency to overdo. I also know that he is still on pain medication and his surgery was last February. He expressed some concern of problems he had heard associated with the St. Jude's mechanical valve. However, everything I have found was a recall back in 2000 so that should not affect him. His wife can tell me little as well so I feel like I have one hand tied behind me. Neither of them use the internet and they rely on me to investigate things for them. It is really rather difficult with limited knowledge, but I always want to do anything I can to help them. Everyone here was so helpful and encouraging before, during and after his surgery. I really have no idea where to research this type thing. My husband also has coronary artery disease but so far he has only had angioplasty and a couple of stints, so that is a very different from what they are experiencing.

I want to help them...but really don't know how...

[Nancy]

St. Jude valves have an excellent track record. My husband has one, and a HUGE number on this site have them as well. It is an excellent valve with few problems.

There was a problem with a particular St. Jude valve the Silzone valve. That one has been off the market for a long time. That may be what they are concerned about.

A simple check on the St. Jude website, looking up the model number of the particular valve your friend has, would be a good thing for you to do to give him some peace of mind. It should show any problems (if any) with that model.

The model number is on the medical wallet card, from St. Jude, that your friend should have in his wallet.

It is very important for your friend and his wife to have a thorough understanding of his medical conditions. Perhaps you can help them in that respect. Ignorance is not bliss here. Ask them to get copies of his recent test results and copies of any information his doctor can provide. They are entitled to have them, and should have them.

[Julianne]

You have been a tremendous help. I really appreciate your time in sharing this information with me.

Best wishes for you and your husband..... :p

Julianne