A few more questions about grandmother' valve surgery and death after surgery

[Robb73]

I posted here on 10-6-2005 about my grandmother's surgery & her death 2 weeks after it I have a few more questions, i hope that is ok, I looked on the medicare billing paperwork and here is what it says for the surgery:
1 repair of mitral valve
1 valvuloplasty, tricuspid
1 insert ia percut device
I know now that the surgery was the only hope, I just wish it would have turned out differently. Also she always had high blood pressure but once she got to the hospital, her blood pressure was low even the week before surgery. what does that mean? Also they had said that when they went into do the surgery, the right side of her heart was very weak and that the doc. did not know that till he did the surgery is that normal not to know ahead of time even with all the tests? They said that the weak right side of the heart is why she never got better after the surgery. I wonder why they pushed the surgery and not just let her have 6 more months? a doc thinks she may have had rhematic fever as a child & that her heart may have been bad for a long time. does that make sense? Should her primary have realized all her heart problems sooner? The multi organ failure after the surgery in the ICU was that caused by being in ICU so long? I keep thinking maybe if she had stayed on life support longer she may have gotten better;everyone says no and that the fact that she died 20 min. after it was removed means that even with life support the end was close. Thanks in advance for answers,I miss her so much & still having hard time with this & just want to be clear on all the medical question

[Cleveland Clinic]

Robb73,

These are really impossible questions to answer. It is clear that your grandmothers surgery carried some risk. It is impossible to say what would have happened if she wouldn not have had the surgery, but looking at your original and this post, her corse would have probably have escalated and she would have probably suffered from further cardiac symptoms.

I can tell you are still hung up on a lot of the details. I would suggest you sit down and discuss the case with your grandmothers physician who can perhaps put this more in persepctive and answer the details for your questions.  It is impossible to speak without generalization here, but the overall picture I have from your post is your grandmother lived a long life, with many happy memories which is why you miss her so much.  Your focus on the surgical descision was made with the best hope and outcome in mind, but sometimes that is just not the case. You didn't kill her by undertaking a surgery or withdrawing life support, and the quality of life she would have had even in that situation is questionable.

The greiveing process is a difficult one. You will always have some questions. If you continue to get hung up, or cant get over these details perhaps some grief counseling may be of help.

good luck

[Robb73]

Thanks for the reply, I guess I should stop focusing on the details. I doubt her doctor would talk to me now, but I have to talked to enough medical doctors, nurses etc, and everyone seems to say the same thing, so I guess I just need to accept what happened and how, but that is the difficult part.....

[Konopka1955]

Hi Robb,  I'm sorry to hear about your grandmother passing away.  You asked if it was possible to have had rheumatic fever and not know about it. I can say for me - it was - I had a heart attack many years ago and yet until they went in for my mitral valve surgery just last year - no one (including myself) knew that I had ever had rheumatic fever.  The surgeon said it was definently scarred from rheumatic fever.  So in my case and perhaps your grandmother as well.  I don't know for sure.  But up until I was 49 years old I had never been told I had it and previous to my surgery I had many cardiac 'tests' and catherizations over the past 10 years.  I do remember my surgeon saying - he wouldn't know for sure how badly my mitral valve was damaged until they went 'in' and looked at it - they had hoped they could do a repair - but it was so badly scared - I needed a mechanical one..  Then right after surgery I went into "Full Heart Block" (electrical) and I know that was unexpected.  But it does happen.  I guess (I'm guessing) its hard to know 'exactly' the condition of the entire heart until they get in there.  Even then I wouldn't think they would know for sure - how the heart will react to the surgery.  Especially as we get older.  Its even more of an impact to have open heart surgery - I would think.  I think each case is 'different' and I'm not a doctor.  But as a heart patient - I can tell you - I agreed to have surgery and take those chances - because I knew I could not have survived at all without taking the risk and I do remember the surgeon went into great details about all the possibilities of problems during surgery - as any heart surgery is very risky.  Then again without it - I really think I would not be alive today.  

Please take care
Konopka

[Robb73]

Thanks for your reply. That took a load of my mind! The doctor said that considering when she must have gotten rhematic fever, it was a miracle that she lived to 77, most people at that time died in their 50's. Thanks again for taking the time to post. It really helped!

[Cheryl M]

I am sorry for your loss , I was were you are 9 years ago when my grandmother passed away ..When they came out and told us they needed the familys permission to remove the respirator , that basically she might get better but the next time she got sick it would only be worse on her  yet still I was the only one who said "no" ....

when I walked into her room and I looked at how frail she was and how weak she was , she was 83 and a fighter and I figured if she couldnt fight anymore then there was nothing anyone could do, so finally I agreed and they lowered the b/p meds and highered the morphine drip and she went into cardio-pulmonary arrest and died peacefully .

Yes I was stingy in wanting to keep her and yes I thought that the Dr's could have done this or that , but even the smartest doctors or the best medicine can only be so life saving and there are times things have progressed to a point that you have to let go and that is the hardest thing to do !


brightest blessings in your time of need

[Robb73]

Thanks! It is nice to know I am not alone in having gone through this. Somedays I feel that I am ok and other days a much harder and I still keep playing what if!
Thanks again for the support

[kpacey]

Robb, my 45 yo brother recently had surgery to repair his tri-cuspid valve, which no one knows why it was damaged.  It could have been from a viral infection years ago, caused by diet pills, etc.  All seemed to go according to plan until a few days later when his heart stopped.  Like you I went looking for answers and consumed myself with thoughts of "what if".  The fact is, it's not always like we see on TV.  People really do die and we just have to accept it and move on.  I'm not saying it's easy as it's taken me 3 years to let go.  All I do now is think of all the good times we had together and how lucky I was to have him in my life for the time we had.

kp

[mydad]

I have a very painful, sad story to tell.  My dad was diagnosed with mitral valve prolapse five years ago when he was 68. Five years later at age 73, his cardiologist told him his condition was much worse and should undergo valve repair/replacement.  He was shocked and distraught.  He had hardly any symptoms, but was told that if he did nothing, he would have a major heart problem in five years.  He elected to have the surgery with my mom's and my encouragement to do it sooner than later.  Two weeks before Thanksgiving he had the surgery.  There were extreme complications after the replacement because of his extensive calcifications.  He had one leak after another, four redo's of emergency surgery.  Twelve hours of surgery, and his heart gave out and he passed away.  My mother and I were in shock.  We were told there was a 5% mortality rate.  We are still in shock.  What were these doctors thinking?  He may have had problems to come, but he would be alive and maybe he would have lived for awhile.  
We spent Thanksgiving without him and can't believe this surgery to mend his heart, took him away from this life.  He relied on their judgement and they did this to all of my family.  I realize that he could have had a stroke possibly in the future and then I would also feel guilty that we did nothing.  But this is a horrible feeling because he so much wanted to live.  I really do believe doctors are way too aggressive with their surgery.  To them, it's a medical learning experience, to my mom and me, it's tragic.  Has anyone ever heard of valve replacement with such tragic results?

[donnao07]

my mother in law went in the hospital 12/8/04 last year to the date for her mitral valve replacement. She was 82 but looked like a 62 year old still going out dancing on friday nights. They told us she needed the valve replaced or she would die. This would give her 10 to 15 years of a good life & the doctor who did the surgery in manhattan did famous comedians & the outcome was good. We felt we picked the best for her. Well once they opened her up they ended up doing bypass & repairing another valve which they told us they wouldnt do because it would be too dangerous. Her mitral valve went in good but while he was doing the other stuff her heart started bleeding & he couldnt control it from bleeding. They came out & told us that he actually had his finger to stop the blood. I had my 3 girls along with our whole family. Well to make a long story short they saved her life as they said where she remained with her sterm open for 5 days then once they took out the pump inside her to help not put strain on her heart they closed her up. She woke up 10 days later with black toes that she was going to lose because the pump cut off the circulation to her lower body. She finally woke up with the tract in her throat & knew she was dying. She lived another 10 days only to die of her intestines dying not getting enough blood supply. We are left with no answers noone will talk to us. we dont even know exactly what they did. She lived across the street from me & was the best mother in law anyone could dream of having. I am left with nothing but heartache. Her children & all her grandchildren are left with no answers to what the heck they did to her. I feel for you with your grandma...I wish my mother in law would of died during surgery instead of surviving for 20 days which 10 of those days she knew what was going on. They even told her about her toes which we ask them not too fearing she would give up her fight to live. I have so much anger in me because i feel this doctor made this surgery sound like a piece of cake even with her age being 82. I wish we would of never did it. I would of rather her die in the house then to suffer the way she did. Im sorry for venting. Its one year today & theres not a minute that goes by that I dont think of her. She was my everything....Sincerly, Donna

[TomG]

These stories sound very similar to mine. My mother had mitral valve replacement at Hershey in 1974. In the last few years she had been told her heart was continuing to enlarge and she needed the mitral, tricuspid and aortic valves replaced. She had liver problems (acitis?) 2 years ago due to her heart condition. She was 67 years old and met with Dr. Pae at Hershey in September 2005. He told her he could fix her with minimal risk. My mom said what percentage chance of dying. He said 5%. He said he would give her 20 more years. She scheduled the surgery for two weeks later. He replaced 3 valves and dicesected her heart to reduce it's size as it was as large as her head. She laid in the ICU for 3 weeks on the ventilator, had kidney, liver and other organ failure, bowel surgery and finally became septic and died. If she had not had the surgery she probably would have lived 1 or 2 more years. Instead, the Dr. talked her into it and she died a terrible death. I am very bitter as I feel the Dr  sold my mother on a surgey she had no chance of surviving. I wish I knew what I could do.

[ultimategirl63]

OMG!! now I'm really scared, my 79year old mother is having her tricuspid valve replaced on jan 23rd and the surgeon also will be doing a cyro maze procedure at that time for her AF.Please tell me there are some good outcomes out there..

[TomG]

I have lost faith in the integrity of Dr.'s after my mother's terrible death. She was only 67, but her condition was more serious than the surgeon anticipated. The heart/lung machine killed her ability to maintain blood pressure after the surgery. Ask the surgeon how long she will be on bypass. How is her liver. Has she had any kidney problems? Ask a lot of questions and demand answers.

[donnao07]

I also have no faith in the dr's. My mother in laws physician told me not to let her have the surgery. She said valve surgery is dangerous when they are older but my niece worked for the cardioliogist who promised her she would have 10 to 15 years. He also stated that he was sending her to the best at presbyterian cornell the same dr who assisted in david lettermans & larry king's surgery. So we felt she was in the best hands. The surgeon  made the surgery sound like a piece of cake. He was so soft spoken & we really believed in him. We felt she was in the best hands & one of the best hospitals in nyc. We never ever saw the surgeon after her surgery. He went on vacation while my mother in law laid dying in that hospital room & one of the nurses there told me sometimes its better to leave them alone & not do the surgery when they are older. My mother in law probably would of still been alive today or maybe not but my family feels responsible for taking her there & encourging her to do the surgery. Im sure their are plenty of good outcomes out there. You can go to valvereplacement.com & hear alot of good stories & get plenty of information there. Good luck to you & your mom. Please let us know the outcome & hopefully you have a good story to tell us.

[donnao07]

Im sorry if I vented like that & dont want to scare anyone because sometimes surgery does save your life. I myself have 3 leaking valves & im 42 & i have a daughter who has 2 leaking valves along with mitral valve prolaspe. Im scared for her future. Good luck to all on her.

[TomG]

What I have realized after reading the comments is this: if you or your family member has a sucessful operation, you have no reason to seek out information. This site seems to attract people like myself, that have lost someone during a surgical procedure. It is a terrible thing to lose someone and it is good to find out you are not alone. However, I do feel there are many more successes than failures for those contemplating surgery. Good luck to all.

[Robb73]

Hi I just decided to check my post again and saw all of the newer posts. It is true we tend to seek answers when things go wrong. I know it is odd, but there is some comfort in knowing I am not alone. I also saw the movie Walk the Line about Johnny Cash then looked him and June carter up online, June Carter died from complications of valve replacement surgery. She was rich, a celebrity and must have had the best doctors and still died. I know what you mean about venting, I still think the doctors did not explain to my grandma that without the surgery she would died with in 6 months to 2 years and with the surgery she would die, I was not there when they explained my mother and brother were and they will not talk, but I am sure they did not explain it like that. I would have rather her not had teh surgery and died at home or in hospice, the 2 weeks in ICU were terrible, I was there all the time and the worse part was when after 4 days she seemed to be getting better the all of a sudden got worse. the docs my mom and my brother were all pushing for the removal of life support after her kidneys, lung , intestines and stomach all failed and then she was also septic, locially I know that she would not have made it, but part of me thinks that maybe if we had left her on the machines longer she would have still been here. Now I am the one venting and going on. It is just so hard she was more like mother mother than my own mother in so many ways and my kids who are 7 and 3 still miss her so much and talk about her all the time. I know I am lucky to have my wife and kids which I hear all the time from people, but it still hurts not just for me but for my kids, my mother travels a lot and my in laws are very cold people, so my grandma was the only loving kind sweet grandparent they had and now they will have to grow up with out her. I could go on more, but I think I have written too much already, thanks to all who give me the opportunity to vent!