Think twice...get several opinions...and STILL question what you are told

[scared]

After going through a nightmare these past 5 months with my poor mother (at age 82) who was told in January that she "must have" an aortic vlave replacement...I have to tell absolutely everyone that they must take control of their own future and continue to probe, ask questions, get several opinions, investigate, and then, still, think twice about the quality of life they have and weight the pros and cons of their next step.

Each of these past 5 months my mother has been presented with new challenges and problems all steming form her original reluctant decision to trust a cardiologist that she "must have" an aortic valve replacement.

February was the replacement surgery. March was recuperation and the beginnings of symptoms of endocarditis and A-fib. April was the beginnings of vancomycin treatment. May was implant of a pacemaker, the insertion of a PIC line, the beginning of taking coumadin and amiodarone (a VERY dangerous drug!!!!!!!!!!). June was a month of barely living in a sub-optimal a nursing home having vanco insjected into the PIC line daily, vomiting daily, losing muscle mass and weight, living with an oygen tank (also new since taking vanco and amiodarone), but overall looking healthier and hopeful. July was having the PIC line removed, going home, starting to decline, having blood pressure drop, vomitting still, having INR readings go through the roof...and ending up being told that the amiodarone lead to the vomiting and oxygen deprivation and the vanco lead to a thickening of the mitral valve and that another valve replacement is necessary in order for you to live. However, in the meantime, the amiodarone isnot out of the system and the low oxygen and vomiting is still present unti the amiodarone gets out of the body...and you arae 40 pounds thinner, cannot stand or walk without a walker...and have to be given a shot prior to each meal just so you can keep it down.

What woud have prevented the above? Getting second and third opinions, doing research, deciding if living life with known conditions is perhaps better than opening yourself up to the risks of surgery.

I am sick knowing that my beautiful mother may have lived a below optimal life for longer with her aortic valve problem, but instead has lived a 5 month NIGHTMARE because the medical profession believes that they are god and that elderly people should be subjected to surgery and medications to prolong their lives.

I am on a soapbox about the skyrocketing medical costs and the strain on familes when elderly people are being encouraged to choose procedures to add another 10-15 years to their life.

I feel as though I have let my mother down in not forcing her to keep asking questions, keep searching, and, in the end, making a decions that she could be 100% happy with. Instead, I have watched my mother decline and suffer...and it is still not over. I sit with her for 8 hours each day encouragin her to eat and, if she is lucky and the reglin they give her will allow her stomach to keep food in, she is ingesting about 500 calories a day. She does not leave her bed even to pee and her most recent cardiologist bounds in dily to tell her to get strong because in another month they want to do open heart suregery again.

We live in a crazy, messed up world and the health care field has run amuck.

My mother is suffering...the family is suffering...and none of this needed to happen.

Please, everyone, think long and hard when you are told you must be cut upon.

Thank you for listening.

 

[Ross]

I'm sorry to hear that she has suffered so. Perhaps a second and third opinion would have led to a different outcome, perhaps not. If indeed the valve replacement was really needed, she probably wouldn't be here today if she hadn't had it. No one knows for sure what the outcome of surgery will be for any one particular individual. Most do just fine, but as is the case with your mom, not everyone does. It's too bad none of us are given guarantees when about to go through this. It would lessen the anxiety levels enormously for everyone, but it's not like that in the real world. It certainly is a fact that we must seek out advice and be our own advocates. This is a given in today world. I wish I had some words of comfort for you, but I have none that will make anything better. Only know that she is cared for and sorry that it's been hell.

 

[Nancy]

This is indeed a tragedy for your mom and her family. I am so sorry she had a poor outcome with so many complications.

Unfortunately, there aren't any alternatives when a valve replacement is absolutely necessary. Valve surgery has saved millions of lives. In years past, this was not the case and people with valve problems died.

It sounds as if Amiodarone has played a big role in what has happened to your mom along with endocarditis. That in itself (endocarditis) could have caused the mitral valve problem. And much of what has happened to her is the result of trying to rid her body of infection. It is such a shame.

I will keep your mom in my prayers.

 

[dkapuscik]

Its easy to look back and see what we may have done differently. I agree that a lower quality of life is sometimes better than what your mother went through. it does sound like perhaps a second opinion on the Amiodarone would have perhaps helped, but no one knows. The endocarditis itself is a death sentence, believe me, I know. It is highly unlikely that the Amiodarone caused that though. I'm sorry for her suffering.

 

[Georgia]

I'm so sorry you and your mom have gone through this. I think things are a bit of a crap shoot at your mom's age. My mom had a friend of similar age who had her aortic valve replaced and has never looked back. My mom, who was incredibly healthy, got an infection and was gone in less than a week.

I think all you can do is the best you can.

Again, I'm so sorry for your family. I hope your mom has the best possible result. My prayers are winging your way.

 

[MikeHeim]

First, let me express my condolances for the series of troubles your mother has experienced over the past several months. It is awful that anyone should live in so much pain for so long.

However, please don't indict the entire medical community over what has happened. I don't even believe it is fair to criticize your current doctors (from what I have read above). It sounds like they were doing what they thought was best, and followed a course very consistent with how they would have treated anyone else. They couldn't have had any idea how your mother would react to Amiodarone, and it did not cause her infection. Even had you declined the need for AVR, you need to realize that your mother would not have done well without it and eventually would have fallen into CHF.

 

[Karlynn]

Hind sight is 20/20. You and your mother may have regrets over not taking a different course of action, but you made the best choice you could with the information you had. There's no way of knowing if anything would have been any different. I'm so sorry your dear Mother is struggling so.

 

[Barbara Stewart]

To Scared

To Scared

Like everyone else on this forum, I am sorry for the hell you and your family has had to go through this past few months. To echo many of the responses it is impossible to know how things would have turned out had you asked more questions. You indicated that your mother trusted her doctor and continues to. How does she feel about things now? Does she have regrets or does she still have hope that she has a future? Have you talked to her about it? I hope you can find some peace with this situation and your mother as well. I will keep both of you in my thoughts and prayers.

Please stay in touch with us here. I think you will find support and caring as well as knowledge, wisdom, and hope.

Barbara