Mitral Valve

[Suzanne Alami]

Hi everyone,
I am new member, but not new to this site. My mother is Nancy and her husband, Joe is my stepfather. I have learned so much from them and I am now taking after my mother and becoming the in-house doctor for my mother-in-law.

My mother-in-law came to visit from Morocco in April and ended up in the hospital in Huntington, NY in June. She was diagnosed with Amiodarone Toxicity after ruling out everything else. She had been on this drug for atleast 6 years in Morocco because her doctor thought he was doing her a favor by controlling her afib and keeping her from surgery. She experienced every last one of the side effects that come along with Amiodarone. The worst being complete scarring of both lungs. We found a wonderful pulmonary specialist, Dr. Peter DeLuca. He has been treating my mother-in-law with Predisone and most of the scarring has since disappeared.

The problem now is that she has CHF since July and was taking Lasix. For some reason her internist decided to take her off of Lasix and she ended up in an ambulance a week ago Monday. We live closer to St. Catherine's hospital in Smithtown so the ambulance took her there and we started all over again, only now concentrating on her heart. She was transported Sunday night to Stony Brook Medical Center. She underwent a catheritization yesterday and it was confirmed that she has a severe problem with her Mitral valve. We suspect that she had Rheumatic fever at some point in her life. Tomorrow she will be taking yet another pulmonary function test to determine if her lungs are strong enough to sustain the heart lung machine. We are hoping all goes well and that they will do the surgery on Thursday or Friday. The surgeon said that he would like to first try to repair her valve and then if that doesn't work he will replace it with a pig valve.

The real reason for my post is that I would like to know if anyone out there is familiar Dr. Krukenkamp and Stony Brook Medical Center. From the information my mother has found on him, he seems to be one of the top doctors. He has very impressive credentials, but I realize that that doesn't always mean anything.

Please, if anyone could let me know anything as soon as possible, I would like to pass it on to my mother-in-law. Also, has anyone had a pig valve replacement. Dr. Krukenkamp said that he can't use a mechanical valve for my mother-in-law because of her age, 71. He said that they have found that older patients don't do well with prolonged use of Coumadin. I told my mother-in-law that she is lucky because she won't have to worry about her levels every week and who knows if Morocco even has Coumadin.

Thanks,
Suzanne

 

[Nancy]

Hi Suzanne

For all you folks, this is my daughter. She's a terrific gal. Our family has had a real "heart" type summer UGH! Joe had major medical problems, Suzanne's dad had heart problems, Suzanne's MIL has mitral valve problems, and family friend, also a new member here (Helene Smith) has been diagnosed with a cardiac myxoma. We all feel like we're living in the hospital.

Well, I'm glad you joined, Suzanne. You'll need this site for info and support as your mother-in-law approaches her surgery date. Let us know what the exact date is and I'll put her on the calendar so we can keep track of her, and you, her caregiver.

Hope to see you here often.

 

[Mb]

Hello!

Welcome to this site! Your Mom, Nancy, has such a vast wealth of knowledge about these issues, that I am not certain I could add one iota of info! However, I believe I remember correctly when I tell you that my husbands Dr. said that in the mitral position, biological valves did not do as well, and that if he needed replacement (he did) that he had to go mechanical. Your comment also about coumaden for older folks surprised me, as I thought a substantial percentage of the elders do take coumaden, for a variety of reasons.

As a caretaker myself, I wish you the best in the coming months. The journey up the mountain with someone you love can be a struggle. It is amazing what grace God gives us to handle these problems though.

Go with peace.

Marybeth

 

[Nancy]

Hi Suzanne-

There's a wonderful thread re: valve choices. It was started by Peter Easton and named "Making the Choice.....". It's really an exhaustive study of how to select a valve, the pros and cons of each type.

Here's a link I hope

http://www.valvereplacement.com/forums/showthread.php?s=&threadid=304&highlight=Making+the+Choice

When the date is set for your mother-on-law, let me know and I'll put it on the calendar so we can kep track of her progress.

When you post next time, try the Pre-Surgery forum or the Heart Talk forum. The Small Talk forum is for insignificant things. Surgery is not insignificant.

 

[NancyMVP]

My aunt had a her Aorta valve replaced with a pig valve. This was 25 years ago. I don't know who did her surgery.
But her heart is still ticking. She lives on Long Island now. But at the time she lived in Brooklyn.

 

[Kevin M]

Nancy, that Valve Choice thread should get an award for the longest thread ever, huh?
Kev

 

[Nancy]

Hi Kevin-

That is a long thread, but if you have the time to read the entirety, you could probably pass a medical test. LOL.

So far, my daughter's mother-in-law is still waiting to hear about her surgery. She came down with an intestinal infection and it had to be postponed for a short time. She's still in the hospital.

As everyone who has been through that knows, even though you hate to have to face this surgery, it's postponement is even a greater disappointment. Gearing up and then gearing down and back up again does a real number on a person. She really needs to have this done. Her regurg. is severe and she's passing out from time to time.

The surgeon, understandably, wants to make sure all infections are gone. It's too risky to do otherwise.

 

[John Cochran]

Suzanne,
I am sorry to hear about your MIL's problems...your family is sounding like mine for all the members who have had recent heart problems!

Right after my own valve replacement in June of this year, I had a cardiac rehab specialist who had her mitral valve replaced with a pig valve. She is doing great (only in her 20's) and takes no meds other than a daily aspirin.

I am very familiar with the Metronic Freestyle porcine valve, and had considered it before aortic SynerGraft homografts became available. I'm not sure if that one is used for mitral valve replacements, but I know it is highly regarded. It is specially treated to retard calcification long-term, and gives excellent blood flow. You can read more at www.medtronic.com by searching for "freestyle" there.

I think at your MIL's age, a tissue valve is the best solution. Especially since she has had so many problems with Coumadin (take that doctor out and shoot him!).

I should mention that your mom is one super-fine human being, and we all just adore her to pieces here!

Best wishes to you and your family during this difficult time,
--John

 

[Suzanne Alami]

Thank you John and NancyMVP for the information on the Porcine valve. It makes me feel a little better. John, actually my MIL had a problem with Amiodarone, not Coumadin and yes, I would like to strangle the doctor who prescribed it for her.

Just to update everyone - we are still waiting after 3 weeks in the hospital for a date for surgery. She has had 3 stool test come back negative and I found out today that they want to take yet another one. But, the urine culture has not been as successful. Twice now it has come back contaminated and she had to give another sample today and now we won't have those results until late Tuesday. Tuesday will mark the end of the 2 weeks for her taking Vancomycin. We are hoping that the surgeon will agree with the nurse practitioner and the Infectious Disease team that there is no infection in the bladder - the last urine test looked good as far as the analysis went and it started to grow well and then it ended up with a reading that indicated contamination.

I am hoping to hear back from the surgeon's nurse practitioner as far as a date or atleast what the surgeon has in mind for her right now. It has all been very frustrating and we are all nearing the end of our ropes. My little kids have had enough. My son told my today "You are NOT going to the hospital today!". So, I took the day off other than talking on the phone to the nurses.

My husband has to leave on business next Monday for an extended trip to the Orient. Keep your fingers crossed for us that my MIL has the surgery before then.

Thanks for all your support and I will keep you posted.

A special public thanks to my mother for all your support and information and to Joe for leading the way for us down the heart valve road. I certainly would be less informed if it weren't for you two.

 

[EVELYN]

Hello Suzanne.....I was just reading your post and you definitely sound as though you have a full plate. Please, as your Mom told me, take some time for yourself.....you can't be the caregiver if you have nothing left to give. Your son was right.....please take some time off. Good luck with everything. You are in my prayers.

Evelyn

 

[Suzanne Alami]

Well, I finally have a maybe date for my MIL's surgery. The nurse practitioner for the Cardiologist told me today that if the stool and urine cultures come back negative again tomorrow then she will have the surgery on Wednesday. This was a bit of a shock, but we will be glad to have this over.

I guess I will let you all know tomorrow for sure.

 

[Kevin M]

Sometimes it's best to have it sooner than later.
There's less time to fret and worry.
Looking forward to getting confirmation. Keep us in the loop, ok?
Kev

 

[John Cochran]

Suzanne,
Sooner is definitely better than later! In my earlier post, I typed "coumadin" when I meant "amioderone," which my son was on for several months...and his doc thought that was too long! Do let us know about the surgery date.

Best to you and your family,
--John

 

[hensylee]

Wesnesday of THIS week? Wow, that's a quickie. IF it is THIS week, please give her my best wishes and prayers are going for her and tell her I wish her GODSPEED

 

[EVELYN]

Hello Suzanne.....you will be in my prayers....please let us know how Noufissa is doing. Sooner IS better.

Evelyn

 

[Nancy]

Noufissa's surgery postponed

Noufissa's surgery postponed

I found out today that Noufissa's surgery has been postponed. Tomorrow, my daughter will probably have a definite date, but possibly a different surgeon. This is due to an infection which developed and delayed everything. Now the original surgeon is not available.

It's very frustrating, but I know that quite a few of you have had similar things happen.

 

[Johnny Stephens]

Oh, dangit Nancy, I'm so sorry to hear about this frustrating turn of events, but it is better to make sure all the bugs are taken care of going in. Suzanne must be really frustrated. Seems to me your family has paid its dues several times over!

Hang in there!

 

[John Cochran]

Double dangit! This was "deja vu all over again"--brought back memories of my own surgery being rescheduled at the last minute because of valve sizes.

I sure sympathize with the frustration, and hope it all gets resolved quickly and smoothly. As my son says, this is why God invented alcohol ;-)
--John

 

[Nancy]

New date for Noufissa

New date for Noufissa

This Friday is the new date for Noufissa's mitral valve surgery (repair or replacement), as long as all the cultures remain negative. The surgeon also talked about doing the Maze procedure to correct her afib. The surgeon said she will be on the ventilator longer than normal, most likely, and that her hospital stay would be a little extended. This is because of the Amiodarone damage to Noufissa's lungs.

The new surgeon is Dr. Alison J. McLarty. Nice to see a woman surgeon for a change.

Suzanne will probably come along later to explain things further. She has been at the hospital daily for almost a month and it will be a big relief to get this surgery done for all involved.