[precaryous]

I don't even know how to start this thread.

I have been in and out of therapy for over twenty-five years. Had some pretty horrendous therapy experiences. I am currently in therapy with an empathic T who I do not think would take advantage of me. Trust is earned.

I have had heart failure at least for fourteen years. I was told a year and a half ago that the heart failure has worsened and I need a heart transplant. But I do not meet the criteria for heart transplant. I was recently told that I am in great risk for Sudden Cardiac Death. I have been trying to wrap my head around this.

My therapy is going to shift focus to end of life issues.

I am 59. I am not taking the news very well. I feel kinda pissed.

I usually like to be supportive and helpful on PC, but please forgive me if I am not myself for a while.
Pre

[Little Lulu]

I hope you find the support you need from your friends here and elsewhere. I also hope you don't give up on being supportive to others. I say this because helping others helps us and while you may be at risk for sudden death, no one knows when their final day will be so continue to live as best you can.

By the way, reading your post DID help me because I had dropped out of doing volunteer work for various reasons and I realized that I need to get back to it because I do enjoy helping others.

(((((precaryous))))) Thank you for sharing.

[precaryous]

Originally Posted by Little Lulu

I hope you find the support you need from your friends here and elsewhere. I also hope you don't give up on being supportive to others. I say this because helping others helps us and while you may be at risk for sudden death, no one knows when their final day will be so continue to live as best you can.

By the way, reading your post DID help me because I had dropped out of doing volunteer work for various reasons and I realized that I need to get back to it because I do enjoy helping others.

(((((precaryous))))) Thank you for sharing.

Thank you.

You're right, helping others does help me, too. I had been feeling like I was in a dark place...and I won't attempt to be supportive when I feel like that. I'm in a better place now. We'll see what happens.

[SnakeCharmer]

(((((Precaryous)))) It's all right to not always be able to give 100% of what you want to give.

Last year, we had to go through making end of life plans for my husband. He has cancer. The lawyer, the wills, the advance directives, the powers of attorney, funeral plans, plans for the care of our pets. All of that. We did it for both of us because I have a disorder where the number one cause of death is called Sudden Unexplained Death. My best friend, my friend soul mate, had the same disorder I have. We were drawn to each other and didn't know why for about a year. Long story short, while appearing to be in blooming health he laid down and did not wake up. Sudden Unexplained Death.

The possibility is horrifying.

My H and I are both still here. We made all the proper legal plans and plans with the hospital and got it all filed in the proper places and then just went out and lived our lives. Make it a point to avoid conflict -- too stressful and as we go along we say the things we have to say to loved ones so nothing is left unsaid and we don't have to go through the process of good-byes. The fact is that we're both significantly disabled in ways that other people can't see and in some ways they can. Earning power shot to hell. We obviously are not "right." But what the hell.

We're doing what we can to enjoy life within the bounds of what we can do physically, emotionally and financially. We're both introverts and spend much time alone. Not alone together, but alone. We made that all right. Other people can't figure it out, but other people don't get to choose for us.

We do everything we need to do to improve our chances of living with the best quality of life we can. We don't talk about dying. We both know it's there in front of us and there's nothing we can do about it. So we decided to live, with all the plans already made, just in case.

I figure that sudden death can happen to anyone at anytime. My best friend in college was killed instantly in a car crash. She was a temperamental person and she happened to be on the outs with practically everyone when she was killed. All over ego crap. When she wasn't having one of her ego attacks she was a delightful, smart, much loved young woman. Having those ill words hanging in the air when she was gone ... it just made things hard on everyone.

So, knowing that time may be short, I try to live in a way where it won't matter if I didn't get a chance to make amends or say sorry or thanks or even go to hell to any of the people left behind because I will have already said it.

Hang in there, Precaryous. Go through that daunting process of taking care of business. Get it done, do it well, then put it in a safe place and live your life. whether it be one day or one year or ten.

Well, hell, I feel a little choked up right at the moment ... thinking about when my H got his grim prognosis, he went out and bought a fruit tree that wouldn't bear a good crop for at least five years. He did it without any fanfare or special words. But it seemed as though he was making some kind of pact with that tree saying he would do everything he could to improve his chances of staying around to pick the first crop. It was a potent symbol.

You might read the book Love, Medicine and Miracles by Dr. Bernie Seigel. It's an old book, mostly about cancer, but it's about facing the end of life, about how even if we can't cure our diseases, we can heal our lives. And the most important thing --until we're dead, we're still alive, so it's important to stop walking around like a living corpse obsessing about death just because we have a grim prognosis.

I enjoy reading your posts, Precaryous, even in the threads where I don't write a response. Your kindness and gratitude show through. It's an honor to get to know someone like you, even if it is on-line and from a distance. It adds joy to my life to meet someone who does her best to give hope and inspiration to others when she, herself, is facing an adversity the others may not even guess. You're a lovely person and I'm glad to have met you.

[precaryous]

SnakeCharmer, What a lovely response, thank you. I'm tearing up.

I am so sorry you and your husband are facing this, too. As a matter of fact, I received a packet of Advance Directives in the mail today. It is hard to focus on them but, as you note, it must be done.

I have felt anxious lately about the Sudden Cardiac Arrest possibility. I asked my heart doctor if I would more likely experience a gradual decline vs. Sudden Death. He said, "Sudden Death." So I'm kind of afraid to go to sleep... I try to process this, yet I remind myself I have only been admitted for heart failure one time, not counting the pacemaker and defibrillator implants. I mean, I'm doing ok, as long as try not to become to active. So it's kind of a mind screw. My defibrillator hasn't shocked me...and my doctor hasn't suggested hospice...so I take these all as good signs?

My focus in therapy has changed. Now we are talking about end of life issues...T wants to talk about spiritual issues, too..her idea.

I have been doing some research on heart transplant criteria and LVAD (heart pump) criteria. While I am not a candidate for heart transplant right now, I may be eligible for the heart pump when I become sicker. There are physical criteria and psychosocial criteria for both procedures. I admit I am worried about the psych criteria. I don't know what they mean about "underlying mental illness," below. Surely most people with long term heart issues have some degree of depression and anxiety? :

..."all VAD candidates should undergo evaluation by a trained mental health professional and social workers in order to ensure that they are able to receive adequate postoperative care and medications before the decision is made to proceed with the surgery. Psychosocial criteria that may predict a poor postoperative outcome include previous noncompliance, chemical dependencies (alcohol and drugs), lack of an adequate support system, personality disorder, underlying mental illness, organic brain disorders, or mental retardation."

Anyway, thank you if you have read this far. It has helped me to write it.

Best wishes,
Pre

[SnakeCharmer]

Precaryous, I didn't want to rely on memory, so I googled around a little to check out some facts and I'll do more tomorrow. You may not have to worry too much about the issue of underlying mental illness.

The main concern is that the patient not be put into greater risk by undergoing medical procedures and that the procedure have a chance of success.

It is considered normal for people with life-threatening medical conditions to suffer from various degrees of depression and anxiety. However, psychosis and major depressive disorder can increase the risk of failure, largely because the patient may become unable or unwilling to monitor their meds, take care of themselves and follow-up with necessary medical checks. There's also a correlation between depression and earlier death (for all patients from all causes) that hasn't been fully explained.

If someone has an unstable mental illness that makes it likely the stress of the procedure will cause them to commit suicide or violence against others or dangerously self-injure or become so unstable in any other way that lives are at risk, then very great caution would be used in the decision to go forward. If the patient is likely to suffer a psychotic reaction the same great care would be taken.

The desired outcome is always to improve the quality of life and/or the quantity of life. As long as the patient appears to have a chance at either of these, the medical benefit is considered worth the risk.

Most medical ethicists say the only concern is whether a mental illness would make it hard for the transplant or procedure to succeed. Improving the chances of success is the only thing that really matters.

Now, down to brass tacks. If you've had only one hospitalization for heart failure, it means you have a proven track record of compliance with your treatment plan to prevent major episodes. You've done well.

Your track record shows your experiences of depression and anxiety have not prevented you from following medical guidelines to stay out of acute episodes that could put you in the hospital. That's what really counts.

Death row inmates qualify for organ transplants. Alcoholics who promise to quit drinking qualify for liver transplants. Smokers qualify for heart-lung transplants. As long as you can provide reasonable assurance that you will continue to follow your treatment plan and you do not plan on suicide, your history of MI should not stand in the way.

I will google around some more tomorrow to see if I can learn anything else relevant. Take care!

[SnakeCharmer]

Precaryous, I read some more articles by medical ethicists dealing specifically with organ transplants. The general consensus is that a history of mental illness should not disqualify someone who has shown they can take care of themselves well enough to give the transplant a chance of success.

Seeing that you have been able to stay out of the hospital, you've proven that you can do it.

It would probably be good to start looking around at your support system, anyone who can and will help you, from your therapist to family to friends to paid care-givers, even to a record of ongoing participation, emotional support and friendship through PsychCentral. It's the sort of thing that shows you are not totally isolated or unable to relate to other people, which is an important element in enhancing one's life experience. They are going to want to know if you will have anyone to help you in the days, weeks and maybe months immediately after a major medical procedure. Again, it's all about making sure it has a chance of success.

The thing about having trouble falling asleep after being told about the possibility of sudden cardiac death. Ah, god. Been there, done that. Ugh. All I can say is that in time I was able to accept the idea of taking it one day at a time and knowing there are no guarantees of anything. In time, I was able to stop thinking about it. I wondered last night if I'd think about and not be able to sleep, but I did sleep. Just fine.

The main reason I came here to PsychCentral is that I have developed a disturbed sleep pattern and I wondered if I could get some help with it. I'm pretty sure it started with the fear of going to sleep. I don't have that fear any longer, but I do have wicked insomnia at times and other sleep troubles. Nothing ruinous, just inconvenient.

I try to practice some sort of partial denial. Okay, I understand that people with my disorder have this thing called sudden unexplained death, that it's probably related to heart rhythm going wrong and blood pressure suddenly dropping. It often happens while a person is sleeping. It happened to my friend. Ugh.

So, partial denial is me doing everything I can to stay healthy, including monitor heartbeat and BP several times a day, taking meds to directly effect heart rhythm and rate, keeping a good relationship with my doctor and then letting it go, telling myself it's not going to happen to me, not today. Today I'm okay. And each day stacks upon the other days and life goes on without thinking about it much except to rejoice in the fact that Today I'm Okay. Even when I feel really crummy, which happens sometimes. I check it out to make sure it's not a dangerous crummy and then go on with the idea that Today I'm Okay.

All I can say is partial denial works for me. Because I know it could happen, I do all I can to prevent it, in accordance with medical guidance. But just because it could, it doesn't mean it will, so ... just for today ... I'm not going to worry about it. Partial denial, the kind that only denies the stuff I have no control over while I'm doing all the things I can do, did not come easy. It took practice to get the hang of it. But right now, I love it. It makes life a lot brighter.

I don't know if that makes any sense to anyone, but it brings me peace.

Take Care.

[precaryous]

Thank you for your reply, SnakeCharmer,

I saw my T today and she is helping me prioritize these concerns. (My mind is so unfocused.). We talked about transplant and VAD criteria today and I read her part of the article I quoted here. She thought it would be better for me to ask my cardiologist what is the specific criteria at the transplant hospital where he has privledges. (Genius)

Also, like your suggestion, she thinks now is the time to build my support system. I am lacking in that area. I need to reconnect with my general cardiologist for support, rapport and information.
I need to find other support, as well...responsible neighbors, church?, friends? Visiting nurse?

My anxiety is all over the place. ( I think I may have already mentioned that). It's like, I may experience sudden death...so let's get the advanced directives taken care of....I'm trying to prepare for possible surgery if I decompensate, so let's do what we can...but right now I appear stable, I haven't been shocked yet...what's for lunch? My mind doesn't know what to focus on so I am trying to prepare for everything! Gah! After a while, I can't function at that high level of anxiety...so I'm big on denial, too. I play my illness down to my family and act as normal as I can around them. It won't help to make them worry, too. So, yes, the majority of the time I am like you and have to let all that worry go.

Thank you so much for your information, advice and support. You have been really helpful, and I know you "get it."

Regards,
Pre

[dddwp]

Originally Posted by precaryous

I don't even know how to start this thread.

I have been in and out of therapy for over twenty-five years. Had some pretty horrendous therapy experiences. I am currently in therapy with an empathic T who I do not think would take advantage of me. Trust is earned.

I have had heart failure at least for fourteen years. I was told a year and a half ago that the heart failure has worsened and I need a heart transplant. But I do not meet the criteria for heart transplant. I was recently told that I am in great risk for Sudden Cardiac Death. I have been trying to wrap my head around this.

My therapy is going to shift focus to end of life issues.

I am 59. I am not taking the news very well. I feel kinda pissed.

I usually like to be supportive and helpful on PC, but please forgive me if I am not myself for a while.
Pre

My husband is 65 and has recently learned that he has an EF20. He is Very depressed and stays in bed all the time. You seem to be doing all positive things, reaching out to others and continuing therapy. Anger at what cannot be controlled is normal, and part of the grieving process. Just by reaching out in this forum, you are making a positive impact on others. Hugs to you. You are inspirational.

[precaryous]

Originally Posted by dddwp

My husband is 65 and has recently learned that he has an EF20. He is Very depressed and stays in bed all the time. You seem to be doing all positive things, reaching out to others and continuing therapy. Anger at what cannot be controlled is normal, and part of the grieving process. Just by reaching out in this forum, you are making a positive impact on others. Hugs to you. You are inspirational.

Thank you very much. You are very kind.

[precaryous]

Follow up:

October 2012, my heart ElectroPhysiologist told me that I needed a heart transplant. He referred me to the heart transplant team. The transplant doctor told me I do not qualify for heart transplant because I weigh too much.

I had lapband surgery and have lost 33 pounds so far. I need to get down to 180 pounds.

Today: I have just returned from seeing my general cardiologist. I wanted to ask him more questions about criteria for heart transplant and/or Ventricular Assist Devices since my heart ElectroPhysiologist told me I need a heart transplant.

Today, my general cardiologist
wouldn't answer my questions about criteria. He said, "You don't want a heart transplant." I'm like, I know, I don't, but the specialist said I did. He looked on his computer and showed me the specialist's most recent note. He pointed out that the specialist didn't mention heart transplant at all. Of course, he couldn't find the note from October, 2012 when the specialist first mentioned heart transplant to me.

I don't know if the general cardiologist (who I saw today) doesn't believe the specialist told me I needed a heart transplant....or if he thinks I misheard the specialist ( I didn't hear him wrong!)..... Or if the general cardiologist thinks I am fishing for a surgery....or if the general cardiologist does believe my specialist said this to me but disagrees with him?

I don't know if the general cardiologist thinks I'm crazy?

I don't know if the issue is lack of communication between the specialist cardiologist and the general cardiologist?

I don't know if the specialist told me I needed a heart transplant....but is wrong?
Does he realize what he has put me through...and my family through? Imagine how you would feel if your doctor told you you needed a heart transplant.

I don't know whether to fire either set of doctors...or all of them.

If I am well enough to not need a heart transplant...I am happy about that, of course. But, as it is, I don't know who to believe.

I wish the general cardiologist would have at least answered my questions about criteria. But it seemed he was so intent on making his point that he wasn't listening to me.

[Silent Void]

Pre

[SnakeCharmer]

Ah, Pre, not knowing is scary! You've been through hell.

Doctors change their minds, they research options that offer similar survival and quality of life without The Big Operation. My H is going through this with a major body part. Right now. He has a life-threatening illness. Two years ago, it urgently had to come out. It's a part you have to have or else rely on external devices to keep from dying. Then three docs consulted back and forth, came up with different options, and he still hasn't had The Big Operation, which we're trying to avoid if at all possible. We find out on Monday if it's time to start looking at new options or if we stay the course with him having regular treatments to keep him going. He's not young. They don't want him to get too old for the surgery. That's a criterion for you right there.

It's just scary as hell for anyone facing this life or death stuff ... and your doctors have not communicated with you well. I hope and pray you can avoid the op while maintaining quality of life and quantity of life. And also that they start communicating with you better. What they put you through by not keeping up up to date on exactly what they saw as the changing best options for you added unneeded stress to you life. This new idea that you may not need a transplant is so stunning that it'll take a few days for the shock to wear off before you can even process it. It's too major to not shake you to your foundations. I hope you'll be prepared with questions the next time you see your doctor.

It's like .... with something like this ... you (or I should say one, a person, me, my H, anyone) you don't know whether to be happy or scared or sad or pissed off. Or all of it. Okay, I'm going to stop now because I experience all of those things myself around this stuff.

Love to You!

[precaryous]

No, they have not communicated with me well. The general cardiologist should have, at least, answered the question that I asked him about transplant and heart pump criteria. But he was not listening to me.

I would be happier if the ElectroPhysiologist cardiologist and the general cardiologist would communicate better with each other. I would be happier if I knew the two medical groups had conferred and told me that while they once thought I needed a heart transplant, they have given it more thought and changed their minds. As it is, I don't know what's going on....and I don't know who to believe or who to talk to to get some clarity and direction.

I would like a tentative plan in the event my heart failure worsens. I always thought heart failure is a progressive disease.

But the general cardiologist urged me to go home, live my life, and not give transplant any more thought.

Really?

[SnakeCharmer]

Oh, Sweetie, I'm feeling for you. Not knowing what's going on or why is, for me, much harder than dealing with even the worst news.

I hope you can get those docs to start sharing the info you need with you, otherwise you -- no one -- can make informed decisions. And all the stress of not knowing isn't good for anyone.

When do you next see any of these docs?

[precaryous]

I see my therapist tomorrow. I'm hoping she can help me find some clarity.

I am due to see the general cardiologist in March....and I see the electrophysiology cardiologist in April.

I spent last night thinking about this: despite what was said yesterday, nothing really changes as far as my goals or my heart medication regimen. I have time to figure out whether I should I ask the GP to sort this out...or if I should confront/question the EP cardiologist. I still have time if I decide to do nothing at all.

I would be most happy if the GP, the EP cardiologist and the general cardiologists all agreed and were all on the same page.

::::

[precaryous]

SnakeCharmer, good luck on your news from the doctors on Monday!

[SnakeCharmer]

Pre, I wanted to let you know that the initial exam turned out well today. Much relief! Have to wait a week or so for pathology reports, but the doctor thinks it'll be okay. Life suddenly feels normal!