Update from New Member Kathy

[KathyAntonelli]

I spoke with the medical examiner today. They said that the dissection occurred at the site of the surgery. I'm guessing that the stitches didn't hold and that's what caused the dissection. I am very upset over this. I know the doctor said her tissue was extremely thin but isn't there something he could have used or done knowing this to make sure they held. I think I could handle it better if I knew for sure that this was going to happen and nothing could be done. I am having a very hard time to even think of this as a surgical error. Could something have been done to save her if a doctor reached her in time and performed a second surgery to secure the stitches? Or would she have died anyway? Grieving this loss is hard enough and now I have to deal with what could have, should have, would have been. I feel like I am spiralling downwards. Any help or comments would be greatly appreciated.

Kathy

 

[gadgetman]

Kathy,

I've followed your other posting about the loss of your Mom. I am so sorry for your loss. Sometimes the "what if" questions will just about drive you crazy. I hope you can find the support and assistance to get you through this time in your life. Sometimes a shoulder is all you need, sometimes you need more.

My prayers and good thoughts are coming your way. You will find plenty of love and support on VR.COM. There are no other words that can be said to help you through this.

May God Bless,

Danny

 

[geebee]

Kathy,

You will never know what could have been because we don't have time machines to go back and change things. You will only be able to find out what someone else will feels SHOULD have been done differently - if anything.

If this were my decision, I would not be happy until I had researched everything and acted on the results. You may not even be able to get all the answers without bringing an attorney into the picture because the medical profession is hesitant to answer questions for fear of legal action (kind of a Catch 22 scenario).

You may come to find out that the surgeon did everything possible but I am concerned by his comments about her "thin tissue". I don't feel that is something you should have learned only because she passed away. I would think that is something that should have been brought up after surgery and the possible ramifications of her condition. I also feel that she should have been watched more closely because, if thin tissue can cause stiches to let go, observation and plans to deal with that should have been in place.

Now, I am speaking from my heart (no pun intended) and not as a medical professional nor a legal one. There may be a lot of things I am missing simply because I am getting information second hand. However the pain you describe is very real and may not be healed without your questions being answered. I am merely offering some suggestions on how to get those answers.

Hugs and prayers coming your way.

 

[Karlynn]

Kathy,
You need to seek the answers that will give you peace. One thing you should know is that surviving an aortic dissection is pretty much a miracle, no matter where you are. My Mom began having pain and got to the hospital within 10 minutes. My Dad actually drove her in the car because he didn't want to wait for the ambulance. When she was taken out of the car she couldn't feel her legs. We were told that this is from the blood causing the heart to bulge and pushing on the spinal chord. I think you mentioned the same thing with your Mom. Shortly after the numbness, she lost consciousness.

We have some Miracle Members here who did survive aortic dissection. Ross is one. I think he will even tell you that he has no idea why he survived his, right place, right time?

I would hope that the surgeon would have done what needed to be done when stitching thin tissue. But check to make sure. Unfortunately, because of all the nusance litigation that the medical community deals with, they are very hesitant to be totally upfront with anyone, even valid questions such as yours.

I know and feel your pain. I was 2 hours away when I got the call from my sister. I don't remember much of that call. I was in shock. She had not yet died, but they were expecting it shortly. There was no way I could get there to say goodbye. I will always regret that. I questioned for a long time why they didn't open her up and try to do something. They were in a regional heart hospital, after all. I finally decided, after my own research on aortic dissection, that it wouldn't have helped.

I wish you some small measure of peace right now.

 

[Ross]

For all medical and scientific purposes, neither I nor Robthatsme, should be here. Why were we spared? I know I ask myself daily that question. Only God has the answer to those questions.

If the stitches let go, she didn't have a chance. No amount of speed or direct intervention would have saved her. It's an almost instantaneous bleed out. Unfortunately, we don't know what the surgeon did while in there. He may very well have done everything possible to secure them. In fact, I'm sure he did or they would never have closed.

I wish I had something to offer you comfort and understanding, but I don't. No amount of my explanations are going to bring her back nor make things right again. I'm sure the Surgeon did all that he could in surgery and honestly thought things were fine. It's one of those times where God called her home and she went according to his plan, not ours.

 

[KathyAntonelli]

In response to Rachels post of the qualifications of the surgeon, Dr. Oz is well known cardiac surgeon around the country. He's also been on Oprah Winfrey and has his own book published. He operated on Frank Torre (Joe Torre's brother) and his partner operated on President Clinton. We couldn't have asked for more qualified surgeons in New York. There was no second guessing about our choice. I guess what Ross said was correct. God wanted my mother and it was her time. Another thing I keep thinking about is that my mom was born prematurely at 4 pounds in 1936. Although that is not really a risk to be born these days at that weight she may have had problems at birth that were never addressed. The doctor said she did have an abnormality in her aorta which she was born with. The last echo results in December of 2004 read:
1. Dilated ascending portion of the aorta at the sinuses (sinus valsalva aneurysm)
2. Fibrocalcific disease of the aorta and aortic valve with a bicuspid aortic valve.
3. Enlarged left ventricle with preserved systolic function.
4. Severe aortic regurgitation and mild to moderate aortic stenosis.
5. Mild mitral and mild to moderate tricuspid regurgitation and
6. Patent foramen ovale.
I just came upon this report going through her things so this surgery seemed quite necessary, although I'm not sure what half of this stuff means. I guess I just have to accept that my mom is gone and nothing is going to bring her back no matter how hard I look for answers. Thanks for all the support.

Kathy

 

[hensylee]

Kathy, it sounds like you are doing all the right things in order to try to understand the circumstances surrounding your mother's passing. One day you will be sure that is exactly what you should be doing.

I do understand your grief. I lost my sister to a very tragic situation last year and the grief, mixed with shock, is sometimes nearly unbearable. I expect you find yourself awake suddenly during the night - just being with her. I still do it. It is going to take you time to get past this. There are stages of grief - my first was anger and it sounds like you are angry, too. Sometimes you just want to beat up the person you feel is responsible. Have all those feelings, Kathy. Give them time to do their healing. Eventually we may reach another stage called peace. My prayers are with you.

 

[Ross]

The last echo results in December of 2004 read:
1. Dilated ascending portion of the aorta at the sinuses (sinus valsalva aneurysm)
2. Fibrocalcific disease of the aorta and aortic valve with a bicuspid aortic valve.
3. Enlarged left ventricle with preserved systolic function.
4. Severe aortic regurgitation and mild to moderate aortic stenosis.
5. Mild mitral and mild to moderate tricuspid regurgitation and
6. Patent foramen ovale.
I just came upon this report going through her things so this surgery seemed quite necessary, although I'm not sure what half of this stuff means. I guess I just have to accept that my mom is gone and nothing is going to bring her back no matter how hard I look for answers. Thanks for all the support.

Kathy

Kathy with what's written above, she needed the operation badly. Her heart was well on the way to lasting damage if nothing was done. It was pretty much critical that the surgery be done asap.

For every one of us, this is risk. We understand that going in. No one feels good about it, but we also understand that if it's not done, we are not going to be around much longer anyhow. I pray that somehow you find comfort in all of this mess. Wish there were more we could do for you.

 

[Arlyss]

Regarding the Loss of Your Mother

Regarding the Loss of Your Mother

Dear Kathy,
I was so very sorry to read of the recent loss of your Mother. You and your family have my sincere sympathy.

The information you listed from your Mother's echo in December 2004 indicates that she had bicuspid aortic valve disease. This is a condition that involves not only the valve, but the aorta itself. The tissue is not normal.

Her aortic valve had only two leaflets, not the normal three, and it had begun to leak severely and was also narrowed, so that it did not open widely. But this was only part of the situation. In addition, her aorta was not normal. It mentions her aorta was dilated and also talks about an aneurysm at the sinus of valsalva, which is right at the base of the aorta, above the aortic valve.

For the sake of your family members, you should know that this condition is genetic and can be inherited. You and other family members, including your Mother's brothers and sisters, their children etc., all should be checked.

Here are some websites that may be helpful to you and your family regarding this condition.
http://www.bicuspidfoundation.com
http://www.cedars-sinai.edu/aorta
http://www.slrctsurgery.com/Thoracic aortic aneurysms.htm

Best Wishes,
Arlyss

 

[McCln]

I am sure the other had told you, there are always things not seen until time of surgery, then not everything is seen then also. At least, found out that she had a heart problem and now you and your family can get checked for heart disease. It runs very much in both sides of my family, my father and mother had heart disease. Just take things one day at a time. You take care now.

 

[JimChicago]

You can also request a copy of the operation report - it may tell more about the thinness and describe the suture technique and material employed. I got a copy of my own operation report - it was only about 1 1/2 pages long but I think I recall it did say what suture technique was used.

I tried to look on the internet for statistics on how often suture failure occurs with valve surgery but couldn't find anything.

It makes me wonder about my own sutures too - do they tend to loosen over time?

 

[tobagotwo]

Please add my condolences to the many above, and the many others that were felt, but not posted.

You still have a journey, but I hope you find peace with this in your life.

Best wishes,

 

[Harpoon]

Surgeons these days can do great and wonderous things under the worst of circumstances. They can heal us in a fashion that borders on miraculous at times, however they are not God, not by any stretch of the imagination.

By far, the most demanding work a cardiac surgeon can do is in pediatrics, working on neonatal patients with severe, complex heart conditions.

The average, normal human heart is about the size of a closed fist. That's it. When we talk about heart valves, we're talking about mechanical devices that are smaller than a quarter and expected to last well over 50 years or more of constant operation, opening and closing on average about 60 and 100 times a minute for years and years without error, seamlessly, perfectly.

In open heart surgery, they cut into your largest blood vessels, the ones that carry blood to and from the body, diverting all of the blood in your system through a machine designed act as a human heart. They cool you down, they stop your heart, they cut you wide open and put you VERY close to death for hours while they slice into your heart, cut out the bad parts, and attempt to replace them and rebuild you from the inside out.

They do this, and most of the time the patients survive. When you think about everything that goes into it, it's amazing ANY of us survived such an experience...

Unfortunately, some people do die. Modern Medicine has it's limitations, so do the doctors that practice it. There will always be that X factor, Murphy's Law, that intangeble anomoly that can turn even a simple procedure into a life and death struggle and kill the patient. It's there, it's the risk, the less than 1 percent mortality rate reported by the very best of the best surgeons in the world.

My surgeon, Dr. Roger Mee of Cleveland Clinic, is arguably the best pediatric heart surgeon in the world right now, he's at LEAST one of the best five. SOme of his patients die too. On the table or during recovery. Sometimes they just don't KNOW what happened, what went wrong.

That's the nature of this business really.


Small comfort I'm sure, but asking questions after the fact, pouring all of your energies into finding an answer that may not even be there, will tear you apart.

Sometimes inspite of all their best efforts, all the technology and experience and skills, the patient still dies.

Sometimes, like Ross and a few others here, we defy the odds too. No one knows why that works out the way it does just like know one really knows why kids are born with the heart conditions they have, no one can prevent it.


I hope you find peace for yourself. My thoughts are with you.