Questions from new member Kathy

[Ross]

I don’t know where to turn to. I see that this is a site for aortic valve replacement survivors and that’s great. However, my mom had an aortic valve replacement on February 7th and everything went fine. She had one of the best surgeons in NYC, whose been on Oprah, etc. She was removed out of ICU the morning of February 9th and doing very well. They removed her pacing wires and then the chest tube. My brother was there with her and she was talking, eating jello, laughing, etc. At around 4:00 everything just turned really bad. She started complaining of chest pain, her blood pressure spiked, legs felt numb. My brother was trying to get her help at Columbia Presbyterian at the Step Down Unit and no one was available to help my mom. They kept saying everything was fine. My mom’s eyes finally rolled back and my brother knew something terribly was wrong. He went out screaming for a doctor and that took about 10 more minutes. They opened up her chest cavity and it was full of blood. They were able to drain the blood but couldn’t get the heart started again. I insisted on an autopsy because something didn’t seem right. All of the results haven’t come back yet but they say an aortic dissection occurred. Now why wouldn’t that have been picked up in the operating room? Or, if a doctor responded to her complaints immediately, could the dissection have been fixed? I am completely devastated that I lost my mom and very confused as to why this happened. The doctor made it sound like it was a piece of cake routinely done. Then what happened to my mother? She was my rock and I don’t know how to go on. I can’t even take care of my 5 year old and 2 year old. I have a big void in my life right now. But, my question is has anyone ever heard of this happening after a valve replacement. We are having it investigated but not getting any answers. Any help would be so appreciated.

Thank you in advance.

Kathy

[Karlynn]

First of all Kathy, you have my very deepest sympathy. I am the member of our family with a valve replacement, but I lost my Mom 6 years ago to an aortic discection. I know the kind of pain that sudden, unexpected death brings to a child, even an adult child.

I, personally, have not heard of a death due to aortic discection after the surgery was done to repair or replace. But that doesn't mean it doesn't happen, just comment on my understanding. You did the right thing in requesting an autopsy. The unknown can be a thorn in your side, and while knowing the cause won't bring your Mother back, it will give you an understanding of sorts. I'm wondering if it was a case of sutures or grafts coming loose.

Again, I'm so sorry for your loss. I hope you get all the information you seek. You have my prayers.

[geebee]

Kathy,
I am so very sorry about your mother and can feel your pain in your post. It is inconceivable to go through the excitement of surviving surgery only to have things go terribly wrong. I will pray that you find the strength to get through this for yourself and your little ones.

Although such surgeries are very common these days and the word routine does come up, we are still discussing major surgery and things can go wrong. Not being a member of the medical profession per se (unless my experience qualifies me for honorary membership), I cannot presume to say whether this could have been prevented. Only qualified professionals, looking at the autopsy and surgical reports can make that judgement.

However, I think you need to pursue this to get the answers you need to make some sense of what happened to your mom. I think finding the answers will help you to cope. If it turns out that this was preventable then your efforts may also help others in the future and you may find your mom's passing in this way will have some meaning.

Please keep us posted and let us know how we can help.

[Nan]

Kathy, I don't have an answer for you about the aortic dissection, but just wanted to express my deepest sympathy to you on the loss of your mother. That is such hard thing to go through, especially when everything seemed to be going so well.

Good luck to you. Hope you get some answers.

[Heinz]

I don’t know where to turn to. I see that this is a site for aortic valve replacement survivors and that’s great. However, my mom had an aortic valve replacement on February 7th and everything went fine. She had one of the best surgeons in NYC, whose been on Oprah, etc. She was removed out of ICU the morning of February 9th and doing very well. They removed her pacing wires and then the chest tube. My brother was there with her and she was talking, eating jello, laughing, etc. At around 4:00 everything just turned really bad. She started complaining of chest pain, her blood pressure spiked, legs felt numb. My brother was trying to get her help at Columbia Presbyterian at the Step Down Unit and no one was available to help my mom. They kept saying everything was fine. My mom’s eyes finally rolled back and my brother knew something terribly was wrong. He went out screaming for a doctor and that took about 10 more minutes. They opened up her chest cavity and it was full of blood. They were able to drain the blood but couldn’t get the heart started again. I insisted on an autopsy because something didn’t seem right. All of the results haven’t come back yet but they say an aortic dissection occurred. Now why wouldn’t that have been picked up in the operating room? Or, if a doctor responded to her complaints immediately, could the dissection have been fixed? I am completely devastated that I lost my mom and very confused as to why this happened. The doctor made it sound like it was a piece of cake routinely done. Then what happened to my mother? She was my rock and I don’t know how to go on. I can’t even take care of my 5 year old and 2 year old. I have a big void in my life right now. But, my question is has anyone ever heard of this happening after a valve replacement. We are having it investigated but not getting any answers. Any help would be so appreciated.

Thank you in advance.

Kathy


Dear Kathy,

Sorry to hear about the loss of your mother. Although your mothers case is
not very common, it does occur. About 5% of all valve replacements run into serious complications of which many do not leave the hospital. I hope
you will get a satisfactory answer from the thorastic surgeon who performed the surgery

I which you peace of mind,

Heinz

[hensylee]

Dear Kathy. I am so sorry for the loss of your dear Mother. I am sure you are still in shock. It will be hard to get past it but we understand what you are going through.

There have been a few deaths of our members, but I don't know if they were like your mother's. Other members are coming in to tell you of their experiences. Perhaps the autopsy will show you something and give you more information.

Please take care of yourself - others will step in to help with the little ones until you can take over again. Please come back and tell us about it and of course, we are here 24 hrs a day to listen if you need us.

[Ross]

Kathy please accept my condolences on your loss. Unfortunately, these things do happen from time to time. The how and whys are never easy to come by.

Without knowing your mothers case, I can only guess at what may have happened. Some folks have weakened vessels and tissues by design hereditarily. Some times this is not known until after surgery has began or discovered later when something goes wrong. In my thoughts, I'm guessing the sewing of the tissues didn't hold or perhaps where they had clamped the aorta, it was in an already weakened area that was weakened further by clamping and once pressurized, slow started to turn into to a full blown dissection.

One thing is certain, without the surgery, mom wouldn't have been around long. Unfortunately, the cure in this case didn't help matters any at all. I would certainly be having it investigated by competent individuals, though I don't suspect that any answer is going to be gotten easily.

[KimC]

Kathy,

The grief and shock you feel must be overwhelming. My beloved mother was diagnosed with inoperable heart disease last week. Like you, I have small children (ages seven, four and one), and the diagnosis temporarily suspended my life.

Adjust your standards of caregiving until you have time to heal. Ask for help. Make a list of things you would like help with. Make another list with the names of people in your life who could help you. Give yourself time.

I have not had aortic valve replacement, I have aortic sclerosis and coronary artery disease. My cardiologist and primary care doctor always check for signs of aortic dissection or aneurysm. It's a risk for me. My doctor said that autopsy is the only way to examine the lumen (interior wall) of the aorta for diffuse disease.

What concerns me most about your family's tragedy is that your mother complained of chest pain, yet was reassurred that everything was fine. As a woman who experienced chest pain and almost died during childbirth two years ago, I would press for answers. I wrote a letter to the president of the hospital and state medical board regarding my experience. Rather than hiring a lawyer, you may want to find an ally within the medical community. My primary care doctor turned out to be mine. He brought my care during labor to the attention of the hospital board, and my OB was fired.

Your family and children are in my prayers.

Blessings,

[Nancy]

Dear Kathy-

My deepest condolences at the untimely and unexpected loss of your mom. Heart valve surgery is difficult surgery and there are risks with each of these surgeries.

Only the autopsy can shed some light on what happened. I pray that the information gained with the autopsy will give you information needed to start to heal from this terrible shock.

God bless.

[KathyAntonelli]

Thank you all so much for your support and sympathy. The one thing I do remember the doctor saying when he came out of the operating room was that mom had extremely thin tissue. He compared it to tissue paper. He said that he was able to layer and cover up whatever he had to and everything worked out well. The operation was done in 3 1/2 hours. He was extremely optimistic. But, after reading Ross' post about the tissue, maybe the aortic clamp was too much for her thin tissue to handle and the dissection arose from there. I don't have the autopsy report yet to see where the dissection exactly occurred. I think what hurts more was that I cried from relief when the doctor came out of the operating room and said she was fine. I called every two hours at the ICU and always got great reports. She even got removed from ICU to the Step Down Unit. It was like a major blow to my mind when my brother called me to get down to the hospital right away. I took off from work the day of the surgery and the day after. After I knew she was out of the woods I went to work and was going to see her after work. Now, I am having tremendous guilt over this. I am told time heals all. I lost my dad when he turned 50 to a massive heart attack and I was only 16. It took a long time to get over the hurt of that. My mom took over the role of both parents at that time. I just turned 40 and have two little ones of my own now and feel like an orphan (as silly as that my sound). I just hope I can get through this. I cry every day. My brother and I have been a good support team for each other though as well as our spouses. Thank you so much for all of your support too.

Kathy

[Ross]

You will no doubt get through this in time. I wish you'd of been a member here before the surgery took place. What many people do not realize is that the danger is not over once the patient is out of surgery. It can continue up to 3 days and longer before someone can be declared recovering well. Sure its a big relief to know your loved one survived the surgery, but things tend to go wrong shortly afterwards if they are going to go wrong. Guess I don't need to tell you this now, it's a little late for it. We may have been able to better prepare you for what to expect so that you wouldn't have been caught off guard quite so badly. ;)

[Harrybaby666]

Hi There Kathy,
I just want to add my deepest sympathy to the list of others who have posted....Although I don't know much about what happened with your mum, I do know I need to add my support and hugs and sympathy here as the loss of a parent, or child, or grandparent or sister or brother is really horrifying and painful. Please know that your in my thoughts and prayers and I will pray extra hard that you pull through this as fast as possible. Take Care, Harrybaby666 :D :D :D

[geebee]

Kathy,
I lost my father when he was 48 (in 1976) and my mom in 2003. I understand your statement "I feel like an oprhan" because that is the very thing I said to my SO when my mom passed.

There is very few things that surpass the pain of losing a parent and, when it is the second one, it is crushing. Also, given the circumstances of your loss, you will have some really tough times dealing with it.

I can tell you not to feel guilty but it won't make it happen. You made a valid choice based on the information you had and that is all you could do. I have no doubt your mom is watching and understands that you love her.

Time does heal this, please trust me on this one. Hold on to your loved ones, especially those little ones, and you will come through.

[Abbanabba]

Kathy I am so sorry to read about your loss. Even though we are reminded of the small percentages of something potentially going wrong before these kinds of procedures, I think we all have the thought that "those things only happen to other people". I hope the autopsy gives you the answers that you need to accept what has happened and cope with it in your own way.

My deepest sympathy to you and your family.

Anna

[catwoman]

Kathy:

I'm so sorry for your tragic loss. You and your family are in my prayers.

[Jean]

Kathy,

Please know you are in our thoughts and prayers and please come back to us if you need a shoulder to cry on or a listening ear.

About feeling "like an orphan", you are not alone...and I am 61. I have lost both my parents and it hit me after my dad died (I always was a proud Daddy's Girl). I often think, "I'll have to tell Dad that" or "Mom would love that book", but they are gone. They have missed so much. I hope I am around for my grandchildren and maybe even a Great Grand or two.

Hang in there. I know you will be there for your children.

[sylviayasgur]

hi kathy,
i am so sorry about the loss of your mother and want to extend our deepest sympathy to you and your family.
you are in our thoughts and prayers,
sylvia

[JimChicago]

I'm very sorry to hear of this tragedy and my prayers are with you.

I know very little about these terms but looking on the internet - here's one site I found:

From:
http://www.wrongdiagnosis.com/m/marfan_syndrome/symptoms.htm
>>>>
Because of faulty connective tissue, the wall of the aorta (the large artery that carries blood from the heart to the rest of the body) may be weakened and stretch, a process called aortic dilation. Aortic dilation increases the risk that the aorta will tear (aortic dissection) or rupture, causing serious heart problems or sometimes sudden death.
>>>>>

I wonder if the 'aortic dilation' would be noticeable on the echo's or other diagnostic tests? Did the surgeon take grafts from other areas to rebuild the thin areas he encountered?

[McCln]

My condelcenses for you and your family at this time. Like others here have said, this is what is called complication from surgery. Not every surgery is perfect and thing do happen. I hope the report will ease your mind somewhat. Just take it one day at a time. You will find peace of mind soon. Take care.