I'm Ending Treatment

[beachbum]

I have made the decision to stop dialysis and end all medical intervention. If its Gods will that I die I am ready. I got a letter from the transplant team today telling me that they were denying me. All this is because I missed one f-ing appointment. The other one I missed because I had two surgeries and they wouldn't let me reschedule. I have had friends that contacted my transplant cordinator and she never even bothered to get back to them. My doctors say this is all a test blah blah blah. Well I'm really done then because my life isn't a f-ing game!

I've asked my doctors and nurses how long I have but they refuse to tell me. They won't let me make this decision without trying to influence me. What I want to know us how much time do I I have to prepare for the end? I have a GFR of about 8. I still produce urine. I have stopped eating to prevent toxins from building up as fast. I have extra weight so I'm ok there. How long can I expect to live? A week? A few weeks? A month? Longer?

[Chris]

I don't think there is a clear cut pattern to go by since we are all different and I haven't seen any studies. But if your gonna try to hold out as long as possible to get affairs straight, eitherr continue dialysis or watch fluid intake even tho you still urinate


We must choose our own path to travel comes to mind and I'm not going to judge which path you decide to take. Just hope it is a comfortable choice choosen.

[MooseMom]

Well, I'm not going to be as diplomatic as Chris, and I'm going to fuss at you.   

It is very hard to really SEE what a person is thinking and feeling through a computer screen, but going solely by your post, it seems to me that you are making this decision out of frustration and anger at your transplant team.  If they are truly denying you a transplant because of a missed appointment, well, they have no right to play God like that, and you are right...your life isn't some "game" or some "test" for them to play around with.  Far from giving up, you should raise holy hell and at the very least, find another transplant unit.  To let yourself die because these people deemed you failed their poxy little test is just foolish.  I'm not sure I'd trust them, anyway.

However, if you truly have no wish to receive any more medical intervention, I would discuss this with your nephrologist and perhaps arrange for hospice care.  They can at least make you comfortable while nature takes its course.

I wish you the best.

[Krisna]

I could say things like just hold on and give them time to reconsider their decision or find another transplant clinic.  Or I could say hey, I've been living more than 30 yrs with kidney disease and have fought to live every step of the way...but ultimately it is your decision.  I would recommend trying to meet with them again and explaining why you missed the appt.  Unfortunately, they take these things very seriously.  That's because they need to know who will be compliant and who won't.  Now I had a bout of non compliance with my second transplant where I actually stopped taking all my meds and they said they would not give me another kidney.  But eventually they did give me another one!  You just need to keep doing dialysis and work to change their minds!  Don't give up!

You can also check and see if there are any other clinics in your area you can go to!

Ultimately it is your decision but please be sure you think long and hard before making it!

[cariad]

Beachbum, don't let them defeat you on this. I don't know your story so I don't know how difficult dialysis has been for you, but I know there are hospitals out there that will give you a transplant. Aren't you in Boston? There are several choices in that city alone. I know it's tremendously degrading to be treated like this - I've been there myself, though not to the ridiculous extent that you are experiencing.

I would like to speak for the people in your offline life that love you, perhaps that girl in the photo with you? They don't want to lose you. I know there is at least one person out there who would be devastated to see you die so young, not to mention all of us here who take the loss of a member quite hard. If there is even a slight doubt in your mind that this is the right thing to do, think of those people and resolve to find another solution to this.

I wish you peace with whatever decision you make.

[beachbum]

I already tried to tell them I wanted to start over at another hospital and they told me it wouldn't matter because all my medical charts will follow me wherever I go. I asked then about hippa laws and they said I could deny access to my medical records but then I couldn't even get PD because no dr will treat me without them. What's the point of hippa then! I am so sick of this world. I know some of you have families and people that care and that keeps you going. All I have is a wife that would be better off if I was dead. I know that sounds morbid but it is the facts. If there is a god then I'm ready to check out. If not it won't matter anyways. Either way I've done what I can do. If people want to continue to kick me when I'm down they might as well put their foot on my throat

[beachbum]

I'm actually beyond angry. I know I sound like I am but I'm not. I'm at peace with this decision. We are all going to die. Even the healthiest man alive is going to die. I actually get to go out in the prime of my life instead of 20 or 30 years from now connected to a machine. Am I mental for saying that? Hell to the no! People are mental for wanting to live to the point where someone else has to change your diapers and feed you through a tube. Im going out drunk and on top of my game and not connected to dialysis. I win!

[Gerald Lively]

Beachbum;

You make me angry.  I’d kick your ass if I were there.  You have no idea what it means to overcome obstacles in life.  I’ve had a few, most I have never mentioned.  Get real, think of what it means to others whose lives you have touched.

If you can’t find a way beyond selfishness, then get in the closet and lock the door.

gerald

[amanda100wilson]

If you are doing this to get at people who are annoying you, ie the transplant team, it will not work.  Their attitudes in their minds will be, 'well, he didn't deserve to be on the list because he couldn't be bothered to attend the appointments' since they have already made those judgements.  They will not lose sleep or agonise about why you made this decision, or mourn your passing, but your loved ones will.

Now I am going to be judgemental here since no-one else will be.  You have been on dialysis since November, which means that your life had gone through a huge upheaval because of this.  Based on my own experience episodes of depression have hit me at about the same time after major upheavals, and I think that you maybe suffering from depression.  If you think this could be the source of your decision, then get some help for it.  Many of us do suffer from depression, it is not a failing since we have a lot more to deal with than most people are dealt with during a whole lifetime.

If this is not at the route of your decision, then I believe that you are wrong to just give up.  This is from someone who has gone through  life with ESRD for over 20 years, and has been on dialysis this time around for nine years with little prospect of a further transplant despite being on the list.  I can testify that there is plenty in life worth living for despite the limitations placed on me because of this illness.

One more thing, have you discussed this with your family, and what are their views about this?

[beachbum]

I have no family. They are dead to me. And I don't care what those retards at the transplanet clinic think. I will be dead by tomorrow morning. Where I am going nothing matters. They can all kiss my ass. I understated this might piss some people off. Some of you might have been at this point. Some of you will be. I'm choosing the easiest way out. And that is my choice. None of you have lived my life or been through what I have been through. Most of you have never seen a man riddled with 20 rounds right in front of your eyes or almos been killed and know what it feels like knowing this might be your last breath. We all lead different lives through different paths. Dialysis is our only thing we have in common. This goes beyond dialysis. Life has defeated me. Karma will get those bastards at the transplant clinic. I'm not worried about them. I have lived a pretty good life for 38 years. Don't feel sorry for me. I should have died when I was an infant. But now it is my time. Goodbye

[Gerald Lively]

There are a lot of people on this forum and you apparently have no idea what this collection of life experiences says.  That you are trying to tell us you have war experiences means nothing to the membership here.  I was in the military before you were born.  You don’t get to know what I have seen and done.  You don’t measure up.

What you are saying is your pisser doesn’t work.  BFD.  Now, there is a reason to end life. 

You’ve got my attention, which is what you wanted.  Now man-up and get over this bout of depression.  It is all in your head.

gerald

[Riverwhispering]

Beachbum you're 38 years old.  Have you decided that if they won't give you a transplant you're gonna take your ball and go away?  Is that some kind of mind game you're hoping will make them feel bad and change their minds?

It's sad if that's your choice. 

Dialysis sounds like a real drag to have to live with but so many people think of it as a lifeline and a blessing.  Why not give it 6 months before you make the final decision.  You might find a reason to live unless you're one of those short people.

[beachbum]

There are a lot of people on this forum and you apparently have no idea what this collection of life experiences says.  That you are trying to tell us you have war experiences means nothing to the membership here.  I was in the military before you were born.  You don’t get to know what I have seen and done.  You don’t measure up.

What you are saying is your pisser doesn’t work.  BFD.  Now, there is a reason to end life. 

You’ve got my attention, which is what you wanted.  Now man-up and get over this bout of depression.  It is all in your head.

gerald

Dude I wasnt looking for attention. All I wanted to know was how long I have to live with dialysis. That's it. Just some ballpark figure. But I have the answer. I have a 9mm handgun that I'm gonba shove down my throat. It's people like u that make this an easy decision. I'm p*cking sick of this world. No attention needed. I am going to wrap up a couple of things and get the job done. End of story. I wish the rest of you the best.

[Katonsdad]

Is that an actual picture of you and your wife in your profile picture ?  Seems like someone would miss you !
We all have stories of triumphs and failures. I waited 2.5 yrs before I even found out if I could get a transplant.  Then waited for the transplant.    I finally did get it now it has failed.  I have thought about
stopping treatment before but It is not a pretty way to go.
You need to know we are all here supportteach other. I usually post jokes because I like to make people3 laugh. This attitude keeps me from crying all the time.  I am 49 and hooked to a machine 3 days a week.
I did PD but my body could not handle it I gt infections Every month, I could not control them. they just
happened.
The person who married you did until death do you part , I don't believe it was by self inflicted and saying
Oh I m sorry for your loss does not make up for the snuggle time they will be missing.

[amanda100wilson]

Phone Samaritans now or go straight to the ER.  You need help, now.

[beachbum]

There's been a few times where I read someone down on life on these boards and ive taken the time to give them words of encouragement. I have NEVER tried to bring someone down further that is already down. My own best friend committed suicide in 1992. I wish I could have been there to help him through his darkest moment. I never got that chance and it's something I've had to live with for nearly 20 years. But this is why I want out. This world sucks. My own drs wouldn't tell me how much time I have left without dialysis and people here think I want attention. That was the last thing I wanted. Makes this decision all that much easier. This world sucks!

[amanda100wilson]

You say this isn't about the transplant thing.  Read your first post on this thread.  It's all aboutthat.  You are not thinking straight.

[cariad]

If you've been through this with a friend then you know how hard it is to live with the guilt that a person close to you has killed themselves. Do not do this to another person. Do not take your grief and hand it to them to carry for the rest of their lives.

1-800-273-TALK

You can ring them up anytime of day or night and speak anonymously, you can even have the gun with you whilst you speak if you care to. They are not the police nor the VA, although if you prefer a VA option, there is probably a button you can press for that. I've worked with them and they take these calls because it matters to them that people are suffering as you are.

[amanda100wilson]

Boston Samaritans helplines
 877   870   4673
800 252 8336
 617   247   0220
508 875 4500
samaritans statewide toll free
samariteens
24hr helplines

[kevinswife]

Beachbum,

I don't know the answer as to how long one can survive once treatment is stopped.  It probably depends on weather or not there are other health issue.

Please, please, please talk to your wife and friends before doing anything final.  My heart goes out to you.  The letter that you received in the mail today from the transplant center is shocking!  Get pissed about it, but please don't take your own life.  Give yourself some time and really think this out before doing anything final.  Think about that pretty lady in your profile picture.  As the wife of a renal patient, I would be devastated if my husband were to take his own life.

My thoughts and prayers are with you.
Kevin's wife

[tbarrett2533]

Trust me when I say that I have been right where you are at and have actually said that it would be so easy for me to essentially "kill" myself no one would even have to know except myself and all I would have to do is simply stop treatment (I do CAPD)

I have NO friends or family willing to be tested to see if they are a match for me, my boyfriend's uncle contacted our local paper with hopes that if they came and did a story on me and I "made the paper" that people in our community would reach out to me and offer up to go get tested well I sure did make the front page of the Sunday paper and just like my BF says, "no one seems to care about what other people have going on." well he is right I did not have one, not one single person even contact me to even wish me luck let alone offer up a kidney for me.  (shocker huh)

There is a 8-10 year wait list in the area where I live for "kidney's"  (there is over 7,000 people on the list in my area and there was only 56 transplants preformed last year) so I do not expect to be dialysis free anytime soon which can be VERY VERY VERY depressing and daunting however I have HOPE!!! hope in human kind and faith in God...... I have hope and faith that god will send me an angel who will send me my chance at a new life...... so I beg you to please reconsider your option to stop treatment and try to regain your faith and hope in mankind just like me............ please stay strong and I will pray for you!!!

[Willis]

There's been a few times where I read someone down on life on these boards and ive taken the time to give them words of encouragement. I have NEVER tried to bring someone down further that is already down. My own best friend committed suicide in 1992. I wish I could have been there to help him through his darkest moment. I never got that chance and it's something I've had to live with for nearly 20 years. But this is why I want out. This world sucks. My own drs wouldn't tell me how much time I have left without dialysis and people here think I want attention. That was the last thing I wanted. Makes this decision all that much easier. This world sucks!

Please give it another day. Sleep on it. I've had many nights where I cried myself to sleep and wanted to die. Never before have I ever admitted this publicly until right now. As a fellow vet I know how worthless you can feel when coming home to the world and either no one cares or if they do it's that smiling pat-on-the-back patriotic bullshit. You made it through all that and you can make it through this.

I'm still trying to get on the transplant list myself and wonder if it's really worth it too. So many hoops to jump through that I feel like a trained poodle. We no longer have any control over whether we live or die and that is about as depressing as it can get. But don't let the assholes win.

 

[Lillupie]

Im not going to sit here and tell you that you want attention, because I have felt the same way before. Actually not too long ago I wanted to do the same thing, if you read a recent thread of mine "I wish someone would put me out of my misery".

Look you are 38 years old. Atleast you were not in your 20s on this. Yeah you are still young. On the other hand you have a wife! A wife that is willing to stand by your side. It does seem that dialysis takes a toll on people and their spouse wants to run the other way. Yours hasnt.

Look, you have to find strength somewhere. I too have and do struggle with this. Im sick and tired of the diet and watching this and watching that and doing the PD every single damn day. I have been doing this for 4 and a half years! Can you believe that? Almost 5 years!

Yes that was harsh of the transplant team to send you that letter. When I first got on the transplant list they put me on hold all beecause I refuesd a Arnesp shot. I was still listed but put on hold for a short time. Look, if getting off of dialysis means that much to you, then you really need to go to every transplant center feasable to you. You must also remember and keep in mind, If they think for a minute that you are the least depressed or you want to stop treatment, they will not even list you. YOu almost have to try to prove to them that you are worthy of a kidney. Like, why should they give you a kidney over someone else. You might even have to wait a little while before trying to get listed again.
 Best of luck. I know it sucks. Kiss your wife because you can. Im on dialysis and I cant even see my husband. He is in the military, and my daughters father wont let me move out of state.

We are here.
Lisa

[gothiclovemonkey]

 
ive been here, and it is hard...
to answer ur origainal question, its different for everyone. you go when its ur time. I went 2 weeks without treatment, before really feeling unwell, and going to ER....
its not pretty though, even if u dont eat or drink anything, its not going  to be easy... but i have to say, if i were going to do what ur thinking of doing... id do it this way, instead of a gun... in a perfect world u wouldnt do it period, but its entirely ur choice, and if u want it no body can stop u...
Yes, we should say, Dont... but what im seeing here, from SOME posters, is not helpful at all... being neg. in a neg. situation doesnt help one bit.... whether or not the post was intended for attention or not!!

anyway, if u need someone, who wont influence u one way or the other, but would try to help u with facts, feel free to message me. or if u just need somone to hear u... i can just listen.

this life can suck, no one knows what u have seen or done in this life, but we do share this... some of us havent had anything crappy happen besides this, some of us have, some more than others.... and its not cool for anyone to judge, or think they "know" what the other is going thru. Hell, a broken nail can be the end of the world to one person... its all perspective.

[MooseMom]

I am so sorry that you are suffering so badly.  I don't want to see you die; you do not deserve that fate.

I want to offer you words of encouragement, but if I were to say, "Everything's going to be OK", you'd be quite right to reply, "You don't know that."  That's what I always say.  I don't really hear words of encouragement when they are offered, and that's a failing of mine; try not to make the same mistake.

Please don't make this decision now.