Help me understand

[missingaab]

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Hello everyone,

Where do I begin?

My partner was diagnosed at age 5 with Marfan's Syndrome. At 28 she had her aortic valve replaced (St. Judes) in an emergency operation. She was being monitored every six months and on this appointment they immediately hospitalized her and operated the next morning. I've been told that the valve was the size of a grapefruit and she did not have any symptoms.

I came into her life about 5 years ago and was aware from day one of her condition. Every six months she had a major evaluation that caused her a lot of anxiety. She communicated to me, I never went to these appointments because they were out of state, that the doctors were monitoring her mitral valve because of some regurgitation.

This past March she had a horrible migraine for a week (very unusual for her) and when she finally agreed to go to the ER, they did a CT scan and found that she had had a brain bleed. She had not bumped her head or been in any accidents and her INR was 3.7. The nerosurgeons here in Chicago felt that the bleed was spontaneous because of the coumadin. While hospitalized, she had another bleed and her INR was 2.5.

Because her aortic valve had been replaced they did a very thorough work up on her and found that her ascending aorta had dissected and had an anyerism at 6cm and that her mitral valve was regurgitating at about 80%. They almost rushed her into surgery but spoke with her cardiologist in Indiana and found that he had been monitoring her condition and that there hadn't been any major changes, except for the regurgitation amount of the MV. The CT surgeon, highly recommend him; Dr. Keith Horvath, strongly recommended that surgery be done sooner versus later because there are too many risk factors but wanted to wait until the neurosurgeons released her from the hospital, which took about a month.

About a month after getting out of the hospital for her brain bleed (subdural hematoma) she went in for open heart surgery. They wanted to do an angiogram but once the doctor got in her heart he didn't want to proceed due to the dissection. She had been off coumadin for 7 days prior to sugery. She hemorraged a lot during surgery but Dr. Horvath was able to make all the repairs necessary and the repairs were working just fine. Upon closing her up, her blood pressure continued to drop and they ended up opening her up again to see if a bleeder needed to be tied off, there was no bleeder, she was just oozing. I fogot the medical term for the oozing. Her kidneys shut down and was put on dialysis a couple of days after surgery.

The bottom line, she ended up with right-sided heart failure. They inserted an external heart pump and ended up transfering her to University of Chicago hospital because a doctor there is working on a internal heart pump. After arriving at U of C, her blood pressure would no longer tolerate dialysis, she was maxed out on all medication and she didn't survive.

My girl was only 40 and had no symptoms of right sided heart failure prior the operation. As I look back she did have some signs of the MVR, coughing when laying flat as she laughed and a decrease in stamina on our walks around the park.

The doctor really didn't know why she went into right sided heart failure. She went through every kind of test imaginable prior the operation and Dr. Horvath said that her heart must have been weaker than they thought.

I know there are no absolutes in life and sometimes our time is just plain up regardless of medical intervention. She got the BEST care, one of the fellows on the team spent that first night after surgery in her room versus the on-call room.

Can anyone help me understand why her heart failed? Had too much damage been done by having her MVR over a long period of time? I'm not interested in blaming anyone for her death, I believe whole heartedly that her doctors in Indiana as well as the ones in Chicago did everything they thought was in her best interest but I'm left with this nagging question, how did this happen to such a young and relatively healthy woman?

There are a lot of details I haven't included because this would end up being a novel and I don't know if there is a word limit for the post. If I've left out anything that you feel could be important, please ask me any questions.

Does anyone have any insight on why this happened? I appreciate any words of wisdom that you can impart on me.

missingaab

 

[Ross]

Hello and welcome to the forums.

Let me start with offering my condolences on your loss.

I don't know if I'm reading this right or not, but it sounds to me like way too much time was wasted getting her into surgery. If an aneurysm is dissecting, that is an immediate emergency surgery. That shouldn't have been put off for another month. I would also venture a guess that the aneurysm threw a clot which is what they thought was a brain bleed.

While I don't know the facts in the case and cannot really provide any answers as to why she went into failure, I can only suspect that her heart had been working extremely hard trying to correct the uncorrectable for far too long and was just plain worn out. I know that doesn't offer much comfort in the aftermath, but this is what I suspect.

 

[Karlynn]

I am so sorry for your loss. I hope that you are able to find some small comfort in knowing that there are many people here who have been down the heart valve road and know of all the many things that can happen and know that there but for the grace of God...

I would tend to agree with what Ross said.

 

[missingaab]

Thank you both for your reply and kind words.

The reason the doctors in Chicago didn't operate right away, was once they spoke with her cardiologist in Indy, he said that the dissection had happened soon after the aortic valve replacement 12 years ago, right at the site of the dacron and has been at the same size since. It doesn't make a whole bunch of sense to me... but from what I understand, they just decided to monitor because they felt opening her up again would be very risky. She was given last rights after her first surgery and just barely made it, from what her family has told me.

missingaab

 

[Ross]

I'm not trying to blame anyone, but I went through a dissection and subsequently later, a valve replacement. Both times, mine turned into nightmare surgeries. I can tell you it's very easy for everything to go wrong. Why I'm still alive even has my Doctors stumped. I just think in my mind that it was wrong for them to wait. If it was dissecting, death is only a matter of time and to wait another month, well to me, that's inexcusable.

 

[bvdr]

I am so sorry for your loss. Just from the information of your post, it seems to me that they were monitoring for years rather than going ahead and intervening while she was in better health. It is something that concerns many of us. There seems to be a real hesitancy among many in the medical field to intervene until there is a rapidly worsening condition rather than performing surgery during a stable period. However, even during the best conditions, sometimes things go terribly wrong. Again, I am so sorry about the outcome.

 

[Nancy]

My deepest condolences at your loss.

The heart conditions that your partner had are very, very complicated. It would be hard to know exactly what happened until you could get your hands on her complete medical history and life-long test results.

There are several people on this forum who have just missed death by a hair's breadth after they developed a dissection. It usually means instant death.

I tend to agree with Ross's assessment of the situation. Too little, way too late.

But we don't have all the facts.

Her family might be able to get her complete medical records which would help in the general understanding of what happened.

She was a woman with a very compromised heart. However, there are people here who have Marfan's syndrome and who have weathered the storm.

I am so sorry for your loss. It is tragic.

 

[missingaab]

Thank you for your kind words.

Is it difficult to get doctors to act when one's condition is relatively stable and in good health?

I know she didn't want surgery and would have never pushed for it but the surgeon here in Chicago pretty much insisted she have it electively versus on an emergency basis.

From the reading I have been doing on these threads, I really have to hand it to y'all, internal strength and tolerance for roller coaster rides seems to be a prerequisite for this journey. I was on that roller coaster for only 4 months but some of you have been on it for a long time, bless you and your strength.


missingaab

 

[Ross]

You are correct. It is a huge roller coaster ride for all of us. Even those who are only family or friend of the patient. The pressures are extreme as you know. We aren't so tough, but we don't have a choice in the matter. We are what we are and I'm sure we are all fearful that another operation may be needed in the future. When that word comes down, we all go into the soul searching and worrying like we did before and wonder, "Is this the one that's going to do us in?"

I wish we had exact and specific answers for you, but we do not. We can only venture a guess. There are so many things that come into play that it's impossible to know for sure what went so terribly wrong. All I can say is that we do feel for you and your loss. I hope in some small way, we have offered some piece of mind and if not, at least offer our friendship.

 

[liamty]

Hi And I too am sorry for your loss.
I too came into my husbands life after he havd been diagnosed and had avr replacement. You really are on the back foot especially as you did not have the opportunity to attend her appointments. I have learned sooooo much over the years, through the good and bad times, unfortunately your times got to the worst sooner rather than later. My advice is to continue with this site, keep reading others experiences and you will find similarities with your situations and may get some answers, at least you are around people who understand your concerns. Your experiences may also trigger something in someone else and may prompt them to seek advice.
I hope you may find support and answers here and you can probably help lots others too.
Hang in there
Best wishes
Donna

 

[MichyB]

I am so sorry for your loss. I can't imagine what you must be going through.

I am a much newer member and have less complicated heart problems (for now) and less knowledge about the subject in general but from what I know, while dissections are very dangerous and usually operated on quickly, it sometimes depends on where the dissection is on the aorta, how big it is and whether it is growing or remaining stable.

I have an uncle who has a dissection and they opted to watch rather than go in for what would have been the second heart surgery in a short while. It has been over a year now, and still watching. I think he's had a few opinions and that was the consensus in his case. This, of course, does not mean that waiting was the right course of action in your partner's case ...

I don't know if you'll find the answers to your questions but I hope you do find some comfort here.