Community Chat

[MyGirlsMom]

@chrystaltree

Hi  I watched the program for several reasons and I thought to myself this is a discussion that many of us need to have with our family members.   My husband and I had an open and honest discussion and now understand how the other one feels.

The program wasn't about doctors lying to their patients but how to deal with the issue of telling them the end is near.  One patient could have continued a chemo treatment but it wouldn't have helped.

[SeaMaiden]

I see not wanting to know the truth about your health, like not going to get a physical exam every year because you do not want to find anything wrong....  Or not having an important test done to rule out something.  Hiding your head in the sand Does you no good.

Can you imagine how hard it would be on your husband to keep such a secret from you? That would be cruel. No one wants to die....but, knowing the truth at least would allow you to tie up ends....make amends and do good things in the time you had left.

[Trinity11]

---

@Ms X wrote:

---

@Trinity11 wrote:

---

@Ms X wrote:

---

@Trinity11 wrote:

My doctor pulled no punches. I had a heart attack ten days ago. There was a delay to the Cath lab until Monday where I was transported to a major hospital had 3 stents and a balloon. I am now in heart failure/congestive heart failure all because of the delay. I was put on aspirin, drugs and morphine but time is muscle and the damage was already done by the time I got to the other hospital and got the procedure.

I went from an active woman loving life to someone that can't walk 3 feet without becoming breathless. The prognosis he claims is guarded. Stage 3 is very scary but I need to know my future. So yes, the truth allows me to celebrate life and appreciate every day.

---

I hope your rehab goes well, Trinity.  It doesn't hurt to get a second opinion.  My mother is alive today because she was in a hospital waiting for Monday when my doctor sister called a cardiac surgeon she knew on his cell.  He was at the mall and went directly to her hospital.  My mother was transferred and got the angioplasty that weekend.  Look at the former vice president, ****** Cheney.  He had his first heart attack at 39 and is now I think in his 70s.  I wish you all the best.  Don't give up.

---

Thanks..a heart transplant did come up but a donor would be hard to find. Glad to hear your mom was treated quickly. A second opinion is in the works for July ...but the inability to breathe and blood work , echo and EKG had similar results with a 40% ejection rate. How much our lives can turn on a dime.

---

I just looked up 40% ejection fraction, Trinity, and it doesn't seem catastrophic, though, obviously, I'm no expert.  50-75 is normal.  40% is not the worst by any means.  Will that improve over time with rehab?

I tried to copy a table I found, but could not.  Don't give up.  Do your rehab and take each day as it comes.  See what your second opinion person offers.

It turns out the table was copied.

Ejection Fraction Numbers:
50-75%	Heart's pumping ability is Normal
36-49%	Heart's pumping ability is Below Normal
35% and Below	Heart's pumping ability is Low

-Read more : http://www.hrsonline.org/Patient-Resources/The-Normal-Heart/Ejection-Fraction#sthash.OWfK9L7k.dpuf@ -- Follow us: @hrsonline on Twitter | HeartRhythmSociety on Facebook

---

End stage he claims is 35 percent and lower. At this point, it is very soon to be in heart failure. Most people reach it by four or five years after their first heart attack. There are other contributory factors that are making the diagnosis more scary for me.

Women stats claim that 42 percent of women die the first year after a heart attack and men 24 percent. I really think it is because there may be a discrepency in how we as women are handled. I am someone who looks like the last person to have a heart attack. I am fit and when I first got to the ER, I thought I had a backache. After they did the EKG and enzymes test they said I was having a heart attack. Hours later... precious time was wasted until about 36 hours they finally gave the stents and balloon in a completely different hospital.

I just say this so women be sure to get taken to a hospital with a cath lab. Without out there can be a needless delay with resulting damage to the heart muscle.

[itiswhatitis]

---

@chrystaltree wrote:

---

@MyGirlsMom wrote:

I watched a Frontline episode last night entitled: Being Mortal

http://www.pbs.org/wgbh/frontline/article/as-real-as-it-gets-inside-the-making-of-being-mortal/

It was a close up look at terminal patients and their doctors.  Some doctors felt like they never wanted their patients to lose hope, so they tried one more medicine..one more study, etc.

There were patients who knew their days were numbered and wanted to leave hospice and die at home.

I just discussed this with my husband, I don't want to know if "my time" is limited..yes, please lie to me.  He feels just the opposite. 

---

      Doctors cannot lie to or mislead patients about their medical conditions, even if they have a terminal illness, even if a spouse asks them to. It would be a the ultimate in malpractice and unethical.  Every patient has the right to decline any treatment, any time.  Doctors can't and do not make those decisions for patients.  They can propose treatment, therapies, medications, studies the the patient always has the right to decline.  I didn't click on the link just like I wouldn't have watched the program.  The subject is just too depressing and for me it would serve no useful purpose.

---

This all depends.  It's complicated and it is an ethical issue still faced even in modern medicine.  On the face of it you are correct.  However, there are some exceptions.  I'll see if I can find an example for further discussion.  In the meantime here's a link to a Journal.

"...Therapeutic privilege' refers to the withholding of information by the clinician during the consent process in the belief that disclosure of this information would lead to the harm or suffering of the patient.”3 Although it is thought that the failure to tell the truth in the context of the doctor-patient relationship is an essential part of therapy,4 it is doubtful whether a doctor is proficient or justified in making a value judgment about what is best for a competent patient. A competent person is an adult of sound mind and body. As Justice Cardozo memorably puts it: “Every human being of adult years and sound mind has a right to determine what shall be done with his own body…” Schloendorff. v. Society of NY Hospital, 105 NE 92 (NY 1914).

This is a peer reviewed article 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2673833/

[itsmetoo]

@Trinity11

I just read where you said your Ejection Fraction is 40.  My brothers was in his low 20's originally.  But with medication and over time he is much improved and is able to do so much more.  At first he could barely walk but now he can walk quite a distance, although slowly, without getting out of breath.  He had to start slow, walking just a few feet at a time, and gradually built it up.  Be patient.  It takes time but you can improve!

[Trinity11]

---

@itsmetoo wrote:

@Trinity11

I am so sorry this has happened to you.  My brother also has congestive heart failure and like you, went from being healthy and active to not being able to walk three feet. It can be a slow process but over time you can gain some of your strength back.  He is much better now than when it originally happened.  Do you know what your ejection fraction is?

---

It is 40 percent. I am so happy to hear that your brother is doing so much better. I really thank you for giving this topic hope. I haven't gotten much from the cardiologist but I must say he was very kind today when I saw him in an emergency visit. They fit me it because I was there for a Holter monitor and he saw me not being able to walk. He was encouraging me and he is playing with the medications to see if they are contributing to the inability to breathe normally.

Thanks again and good health to your entire family.

[scotnovel]

I definitely want to know the truth.  Otherwise how can I make an intelligent decision about my own care.

 My father was told he had a 50 50 chance of the chemo working so he decided to have the treatments.  After 18 months of treatments, including radiation, which included only about 3 or 4 months of quality of life time, he was told nothing else could be done.  At that time the same doctor who had told him he had a 50 50 chance said he really thought there was only about a 10% chance of him being helped but he didn't want to tell my Dad that because he didn't want to discourage him.  My Dad's was angry because he said ne never would have had the treatments, and gone through all the extra suffering, if he had known what the doctor really thought about the potential benefit of treatment.  He would have died sooner, but his quality of life wouldn't have been any worse and would likely have been better, and there would have been much less stress and strain on my mother and their finances.

What happens to me healthwise is MY decision to make based on the best available knowledge.  It is NOT up to a doctor to choose for me based on his or hers personal beliefs or professional knowledge. 

[MyGirlsMom]

---

@SeaMaiden wrote:

I see not wanting to know the truth about your health, like not going to get a physical exam every year because you do not want to find anything wrong....  Or not having an important test done to rule out something.  Hiding your head in the sand Does you no good.

Can you imagine how hard it would be on your husband to keep such a secret from you? That would be cruel. No one wants to die....but, knowing the truth at least would allow you to tie up ends....make amends and do good things in the time you had left.

---

@SeaMaiden

You're misunderstanding my point.  I referenced terminal patients (those who already knew they were sick) and being told they have days, weeks or a few short months to live.

[Trinity11]

---

@itsmetoo wrote:

@Trinity11

I just read where you said your Ejection Fraction is 40.  My brothers was in his low 20's originally.  But with medication and over time he is much improved and is able to do so much more.  At first he could barely walk but now he can walk quite a distance, although slowly, without getting out of breath.  He had to start slow, walking just a few feet at a time, and gradually built it up.  Be patient.  It takes time but you can improve!

---

Thanks so much!! It sounds like just being patient is what I need to do and not jump to any conclusions. I guess it is because my activities were never prohibited because of lack of energy. Even before the heart attack ...two days before I was walking uphill with little to no trouble.

[Ms X]

@Trinity11  I understand that you are still in shock from what happened.  HOWEVER, you aren't taking into account modern technology, medications, and rehab and how much that could raise your ejection fraction.  Look at the other poster on here giving info about her brother, who was much worse off and now has improved quite a bit.

You still need to process what happened, but don't give up.  I wonder whether you should write on placards "Don't give up" or other external directions to yourself to get you through this.  Just looking at these around your house would motivate you to move forward and follow doctor's orders with hope for the future.  I apologize if I am badgering you, but it is entirely possible that over time you will see that much more can be done for you under doctor's orders.  Don't assume the worst this early in the game.