First AVR - Seventeen Years Ago Today

[Arlyss]

My husband's bicuspid aortic valve was replaced 17 years ago now - actually the surgery anniversary is tomorrow morning!

This year the days of the week and the dates are aligned like they were in 1990! He was admitted to the hospital on Tuesday and his was the first surgery on Wednesday morning. He had critical stenosis and suddenly went into congestive heart failure - a very sick man.

At that time, the patient was admitted the day before surgery and the pre-op testing done then. I could not stay with him that night- they sent me home at 10 pm! I could not call into the hospital, but he could call out, and I remember him calling me at 2 AM!

The anesthesiologist was very kind to me. I had requested him specially, and he let me sit beside my husband in the prep area while he inserted the IVs and got him ready for surgery. He told me that he would take good care of my husband. It wasn't until the middle of the surgery that it dawned on me they were going to stop his heart and restart it again. It terrified me.
The anesthesiologist came out and talked to me after surgery, even before the surgeon did. To this day I have a very soft spot in my heart for him!

When the surgeon came out, he warned me that there had been so much calcification, there was a concern particles might have gotten into the blood stream and gone to his brain, causing a stroke. We wouldn't know until he woke up. My husband of course did not know this, and later he wondered why the doctors were making such a fuss about him moving his toes when he woke up. We had no real understanding then what a stroke might mean, but we were thankful he did not have one.

The local newspapers had a number of articles at that time about the recall of the Bjork-Shiley valves due to strut failure. We were told he had to have mechanical because he was young, and tissue valves would only last 10 years. The mechanical would last 100 plus years, and had never failed in the laboratory. All the debate about valve choices available today just was not part of the experience then.

There was not a lot of discussion about coumadin then either. He was turned over to his local internist to manage his blood, which he did for many years. There really were no significant issues with it.

But there can be other issues, besides physical failure of a mechanical valve. We know that now.

Today, I have a picture of that mechanical valve that was implanted 17 years ago. It is the picture taken a year ago, when it was taken out. It is not a pretty picture. The sewing ring had frayed, there is tissue growth around the edge. But the greatest danger cannot be seen with the human eye - the fine, hair-like strands that were on the intake side of the valve. Those strands gave my husband the equivalent of 4 or more simultaneous strokes on the right side of his brain.

Seventeen years ago tonight was that difficult night before surgery. We have been through that experience twice more since then. I am very thankful to still have my husband. And I wish each one who has had or will have valve replacement the very best with the choices available today. Enjoy each precious moment of your life!

Best wishes,
Arlyss

 

[Susan BAV]

...I am very thankful to still have my husband. And I wish each one who has had or will have valve replacement the very best with the choices available today. Enjoy each precious moment of your life!...

Thank you Arlyss. I'm glad you still have each other also.

 

[Curtsmum]

Thanks for your post, we too dont have any choice as my son is a child and they will only use mechanical, were still in the waiting stage.Sorry your husband had a hard time but glad he is still around and happy anniversary to his valve.This sight is a godsend just reading how most people are leading good lifes after surgery. Paula

 

[Phyllis]

Thanks for sharing Arlyss and best wishes for many, many more years together!

 

[Kathleen]

Arlyss
It certainly is an emotional day to relive the date even years and years later. You are both stronger, closer and understand lifes path because of the events that happened 17 years ago. May you both share much happiness.
Kathleen

 

[WayneGM]

Thanks for sharing your experience. Happy anniversary. Many you both have many many more.

 

[MrP]

Thanks for sharing. Our surgery date becomes so significant in our lives...more than our birthday. Lifes is short! Enjoy!

 

[Arlyss]

I was just reflecting a little more on that first experience in 1990, and there are some key things that stand out.

1) At that time, we were told he had a bicuspid aortic valve. But no one mentioned that there could be very dangerous things like an aneurysm related to that. No one mentioned the bulge in his aorta that was there then, or the theory they had for why it was there. No one followed his aorta later, to be sure it would not grow or tear. This lack of an informed approach to BAV remains to this day, although there is more information emerging now.

2) We were referred by the internist to the cardiologist, the cardiologist to the surgeon. We did not meet the surgeon at all, until my husband was in the hospital the Tuesday night before surgery. I would never do that again, ever. In an emergency, there is no choice. But this was not an emergency. We should have sought multiple surgical opinions.

3) I know today that my husband's first surgery was a challenging one. He came through that surgery, and it saved his life. But if we could go back to 1990 again and get other surgical opinions, there is a possibility that some things about that first surgery would have been done differently. And would that have made a difference in what happened to him 15 years later? It is a question without an answer now.

I hope that sharing this experience gives food for thought to those on the threshold of their first surgical experience with bicuspid aortic valve disease.

Best wishes,
Arlyss

 

[geebee]

Arlyss,

Congrats to your husband (and you) for coming through all the bad parts and still being around to tell the story. We can certainly have bumpy roads.

Ahhh - the benefit of hindsight. I feel I might have done things differently had I known I would end up with 3 OHS in 2y years but we do never know, do we? We can only make what we feel is the best decision at any given time. As you know, younger folks just weren't given options so many years ago. In 1980, when I had my first surgery, a mechanical was considered a no-brainer for this (then) 28 year-old. However, coumadin has been a non-issue for me so I can't complain. It was 12 years between my second and third surgeries and it has been 13 years since my third so I am hoping I will not need a fourth.

Hope things stay stable for your husband.

 

[Arlyss]

Gina,

In sharing your experience you certainly give hope to anyone who may need to face multiples surgeries. It is so true that we do the best with what we know or our physicians know/do at that time. You are an inspiration! I hope that you will not need any more surgery or anything invasive at all.

It is very possible that my husband might still have formed those strands - so little is known about them. But I did wonder later why my husband's valve was so small - only a 21 mm. His body size would seem to have called for a larger size. It would have been difficult to clear away the surrounding calcification and enlarge things there so he could have had a larger valve - but I believe that some surgeons would have had a technique to handle that in 1990. That is what had to happen last year, in order to get a tissue valve into him. A lot of calcification had to go, and his aortic annulus was enlarged with a patch of bovine pericaridal tissue. It was high risk. He has both a bovine patch and a bovine valve now, so he is very indebted to cows these days!

I have learned that we need to be informed medical consumers. While the medical community may not be accustomed to patients being self-referred, etc., I encourage everyone to do their home work and not be afraid to seek multiple opinions as part of their decision making process. No matter how it turns out, there is the consolation that everything was looked at and an informed decision was made by the persons who will go out and live with it the rest of their lives.

Best wishes,
Arlyss

 

[geebee]

Arlyss,

You might be right about the small valve size. My first mechanical was a 25mm and I am not a large boned person (a bit larger over all than I was in 1980, but that's due to the good life ). A 21mm sounds very small indeed, especially for a man. However, perhaps an AVR is different from a MVR.

I would think they do need to clear away a lot of tissue to make room for a valve. I know with mine there was a lot of calcification removed but, then, I still ended up with tissue encroachment requiring the second sugery in 1982. I wonder if it might have been needed because not enough "bad stuff" was removed during the first surgery.

I am sure I will never know but it is food for thought and a good reason to do homework and find the best surgeon for your needs.

 

[Karlynn]

Thank you for sharing this day with us Arlyss. More importantly - thank you for sharing all the information you have acquired over the years. You are an invaluable members. My best wishes to you and your husband. He's a lucky man to have you on his side.