I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: beachbum on February 15, 2012, 03:14:43 PM
-
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?
-
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.
-
Well, I'm not going to be as diplomatic as Chris, and I'm going to fuss at you. :P
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.
-
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!
-
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.
-
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
-
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!
-
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
-
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?
-
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
-
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
-
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.
-
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.
-
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.
-
Phone Samaritans now or go straight to the ER. You need help, now.
-
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!
-
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.
-
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.
-
Boston Samaritans helplines
877 870 4673
800 252 8336
617 247 0220
508 875 4500
samaritans statewide toll free
samariteens
24hr helplines
-
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
-
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!!!
-
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.
-
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
-
:cuddle;
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.
-
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. :cuddle;
-
hey beachbum
we started PD on the same day, as you noticed before. I'm currently going through a lot of shit with my transplant centre as well. People are cruel and heartless. They don't see you as a person, but just another patient. In the eyes of most doctors and nurses of transplant centres, we are all that annoying patient who is irresponsible and they will use their power to punish us by delaying our transplant process. I agree with you that karma will catch up with them one day.
However I don't think you should give in to them. Show them that they don't have the power to decide whether you live or die. I am fighting so hard for my case right now at the transplant centre and I believe that if I am persistent and have support, I will be able to win this battle.
You can get over this. I believe in you! You have all our support and I guarantee you that this board will help you every step of the way. Please give it a rest. Calm down and come back to us. WE can do this!!
-
beachbum, some of us have had horrific lives. Believe me when I say you're not the only one. I can understand your wanting to check out; there have been times in my life I've tried to check out but fate thought otherwise. I've spent the last 15 years on my knees thanking the powers that be that I did not succeed. If you'd told me then I'd have the life I have now I'd have had you committed.
Look, I know those a$$holes made you jump through hoops and then denied you for some bullsh*t reason. It's the whole reason I refuse to even consider getting listed; I just won't put up with those kinds of dick-waving power play games. But if it were ME (granted, it's not) there's no way in HELL I'd off myself and justify their decision ("oh, look, we were right, he was mentally unstable"). I'd have my revenge by fighting tooth and nail to get listed elsewhere just so I could go back to them in a few years and say, "Kiss my entire fat, hairy ass. I got my transplant in SPITE of you." Now just tell me that wouldn't be sweet.
You're going to do what you want to do. I would urge you to at least sleep on it a few nights. If you still decide you want to die, don't use a gun. Stop dialysis, have hospice come in and do ultrafiltration only so you don't drown in your own fluids. This also gives you some time and space to reconsider. I would also urge you to think about your wife. If you use a gun, SHE is the one who's going to have to clean up the blood and brains; no one is going to do that for her. Please don't saddle her with that the rest of her life. It looks like she really loves you.
As for how long it takes, there is a hundred-some-page thread here on the site that deals just with that question. Basically, it just depends. Depends on your remaining function, depends on your fluid and toxin intake, depends. From what I understand it's not a hard death, usually.
I really hope you'll step back and take the long view. I know it's not an easy thing to do. You've been forged in fire, my friend. Don't crack now.
-
DD, I highly doubt you have a big fat hairy ass.
Revenge would be so sweet, beachbum.
-
Beachbum;
Let’s compare scars. I have cancer and renal failure. This is my fourth cancer. I was bummed out at the beginning too. But hear this: I’m not eligible for a transplant because of the cancer. Wear my shoes once!
Get real. I’d say, based on my experience that you have about a month, maybe less, before you begin to hallucinate and start to do crazy things. Toxins do that. In short; been there, done that.
If you are a “beachbum”, show some class and get your body and soul to a doctor to discuss depression. There is a support system out there, you only have to discover it. Get down to the beach where the gulls chatter, the waves stack up before rolling to the dunes and it is you and your worth, alone. Take the time to reach down deep, find yourself and think about the future. That is what beach freaks do.
gerald
-
How long can I expect to live? A week? A few weeks? A month? Longer?
Obviously I don't know either, but I'll never forget this post by noahvale:
http://ihatedialysis.com/forum/index.php?topic=21382.msg354004#msg354004
Big love beachbum, you look gorgeous and so does that pink haired vixen kissing your chin.
-
Please think this over.
I do understand how you feel at the moment because in ESRF it is easy
to reach a point when our thinking becomes totally overcrowded.
Next week or the week after another option might come up
but if you stop right now you won't even give yourself a chance.
I do hope you make the right decision
and I send you my best wishes, Kristina. :grouphug;
-
All I have is a wife that would be better off if I was dead.
I think you have a wife who would disagree with that. If you involve nobody else in this decision, be sure to involve her in every single little aspect and answer any and all questions with brutal honesty. And make sure that she has the support she needs to get through losing you.
*huggles*
-
"At the end of the day we have to continue the fight. You never know what's around the corner. There's advances in medicine and things they are working on as I write this that may one day save our lives... All I can say is hang in there and keep bouncing back. It's not what you go through in life that defines you, it's how you respond to it."
[size=undefinedpt][/size]YOU wrote that, Tommy, right here in this forum. LISTEN TO YOUR OWN GOOD WORDS!
-
I have told my therapist I was thinking of quitting. But she helped me. Unfortunately I found out later that at the time I was really sick. These toxins can mess with your brain. Please consider asking for help.
-
:waving; hey beachbum,
I sent you a PM.
take care :cuddle;
-
All I have is a wife that would be better off if I was dead.
I said those exact words to my husband. This whole thing with ESRD has been a huge financial burden. To the point where we had to choose between paying bills or filling prescriptions. The look on his face made me stop and really think about what I had just said. Has it gotten easier, not really. However, I turn to my IHD family because they understand. I even have an IHD member that I talk to on the phone on a regular basis. It helps both me us. Maybe there's a member that could be your "phone buddy". Please ask your wife if SHE would agree that she would be better off without you.
I think she would disagree.
:cuddle;
-
Go placidly amidst the noise and haste, and remember what peace there may be in silence. As far as possible without surrender be on good terms with all persons. Speak your truth quietly and clearly; and listen to others, even the dull and the ignorant; they too have their story.
Avoid loud and aggressive persons, they are vexations to the spirit. If you compare yourself with others, you may become vain or bitter; for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs; for the world is full of trickery. But let this not blind you to what virtue there is; many persons strive for high ideals; and everywhere life is full of heroism.
Be yourself. Especially, do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment it is as perennial as the grass.
Take kindly the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness.
Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here.
And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be, and whatever your labors and aspirations, in the noisy confusion of life keep peace with your soul. With all its sham, drudgery, and broken dreams, it is still a beautiful world. Be cheerful.
Strive to be happy.
-
Beachbum, I am another one who will not judge you. But from what I see your reasoning is wrong. I would not let someone Else's stupidity or inept decisions make my mind up for me. Possibly I don't see the whole picture, I have not followed your whole story but I would be willing to bet your loved ones would not want to lose you. What ever decision you make please make it your own.
-
Hey beachbum
we love you. send us a note to let us know you're still with us where we want you to be. I'mm with Willis and Desert Dancer - it's better to live and find that in living you avenge those who've treated you like sh*t.
Call one of the numbers provided here above for you.
I almost wrote out some real insanity that I've lived through. I just decided I'd rather talk to you in person about it. Let's set that up OK?
contact me
-
DD, I highly doubt you have a big fat hairy ass.
Hey, I'm only 44. Give it some time.
-
What is frusrating, is that I have a friend in the UK has literally run out of access options and is having repeated problems with clotting issues even now with catheters. She has been through hell and back via numerous emergency hospital operations over the past year, and yet she continues to fight despite the adversity. Maybe when the choice is not in a person's control, they fight hard to stay alive, not take the easy route out.
-
DD, I highly doubt you have a big fat hairy ass.
Hey, I'm only 44. Give it some time.
im 28... and i DO bahahaha
BTW< i forgot to add this...
I was DENIED by one transplant clinic, but approved by another... you may try going to another and see? might just be the one u chose is shitty! i was pretty upset being denied over "lack of support network" also still smoking and being overweight, but those can be fixed, my support network cant....
-
I was DENIED by one transplant clinic, but approved by another... you may try going to another and see? might just be the one u chose is shitty! i was pretty upset being denied over "lack of support network" also still smoking and being overweight, but those can be fixed, my support network cant....
This is so important to keep in mind. These hospitals are extremely competitive with each other, and just because this control-freak hospital has labeled you non-compliant does not mean that they can say for certain that all other area hospitals will follow on with the same assessment. That is what this place wants you to believe. You might just be surprised to see what a difference a change of hospital can make, and how a calm explanation and a willingness to address where you could have done things better (if that applies at all) can get you exactly where you want to go. Nothing will irritate the control freaks more than you getting a transplant without their precious permission.
-
Obviously I don't know either, but I'll never forget this post by noahvale:
http://ihatedialysis.com/forum/index.php?topic=21382.msg354004#msg354004
Where is noahvale? I've missed seeing him around.
-
We will be praying for you beachbum. Whatever your decision, make sure it is not in hast. Think long and hard about it! This if a terrible thing that has happened. So sorry!
Thinking of you& your wife.
God Bless,
lmunchkin :kickstart;
-
We can complain because rose bushes have thorns,
or rejoice because thorn bushes have roses.”
-
oh i like that,
reminds me of this...
we have to go thru alot of pricks to pick the perfect rose :P
-
Beachbum, If I were you I would reconsider. Stem cell kidneys are said to be about five years off, and the transplant waiting list is ten years for most people. Since the average lifespan for someone on dialysis is ten years it is pretty moot anyways. And even if you do get a transplant, will you be able to afford the immuno drug bill each month of $1,500? If you are afraid to live on dialysis, go ahead, die. I have been in dead state myself, and come back, so I am personally not afraid of death. Life is bittersweet. Yesterday I spent two hours getting a new crown on my back tooth. I was biting on tooth pillows and had a plastic sheet inside my mouth. They shot me up with anesthetic four times. Today I go to the doctor to see about my complex cyst in my gallbladder. After that I go in for dialysis. But I walked a mile-and-a-half in 30 minutes, took a shower, and feel great. As to your question, death from kidney failure, according to what I've read, usually happens in a couple of weeks. Myself, I hate dirty blood, and feel better after dialysis.
-
Gerald did you write the "Go placidly amidst the noise and haste" one? That is lovely.
This thread is enlightening to me. I didn't realize until now how awful it is to be alive and be on dialysis. I assumed if it wasn't really painful and that is was just something I could deal with, I mean three times a week for 4 hours seems so little time and the rest of the time I can try to live without dealing with it. I don't see an issue at all being on a renal diet. So I have to give up stuff... it's not a big deal if it means I will feel better if i eat right.
Many of you said you have considered killing yourself too. What is it about dialysis that makes you want to die? It must be the pain. I could understand better if that was the reason. Man can you imagine if it was something like being in a wheelchair and not able to feed yourself or do anything for yourself? At least you wouldn't be doing dialysis.. that would be a relief huh?
-
Some people have a good treatment, other people not so much! When i was going to a certain clinic, i had terrible treatments, the techs and nurses werent nice, and didnt seem to know what the hell they were doing. I stopped going. It was that bad. I skipped many times, before just quitting all together! Because I did that, I ended up in a hospital in another town, and found the clinic i now go to. It is... 100% better going there, it still sucks to have to do it, to be 'tied down to a chair' and the general feeling i have after, im wore out, weak, tired, and sick, but the alternative IS death, so I do it. If i had no child, if i had no family, no loved one, i definitely would NOT do dialysis, but I have those things, and also im not quite ready to go even if i didnt... theres still a few things id like to do.
THE POINT though, dialysis does suck, and some people really have soooo much trouble with it (be it due to the staff not being very good at their job, or just the way the treatment makes us feel, or maybe other non-dialysis related things...other illness)
Just because Dialysis makes YOU feel great, doesnt mean it makes everyone feel great. I know i dont ever feel great after a treatment, but I also know what its like to get close to death from missing it... So, for those of you who are lucky enough to have a "good" treatment, keep in mind not everyone is that lucky.
And ya'll that are being judgemental in this post, really?? you really think thats helpful?
-
Riverwhispering asked; "Gerald did you write the "Go placidly amidst the noise and haste" one? That is lovely."
No, I didn't write that. It is called the "Desiderata" and can be found on the internet. I have used it as best I can, for a rule to live by since the 1960s.
gerald
-
Does anyone know how Tommy is doing?
Is there a possibility to phone him at his home in Boston, MA?
I do hope there is a way of reaching him.
Thank you from Kristina.
-
Goth is being judgmental being the same as expressing an opinion?
I am not in any way judging Beachbum, it's his decision to give up life.
I just was curious how bad being on dialysis is. Not everyone has the option for a transplant or doing home dialysis and we all can choose to die instead of choosing to live.
I'm close to starting dialysis and really want to understand the "why" some people feel death would be better then dialysis. I don't see how not having any loved ones around is a good excuse. Get a darn puppy or kitten or something.
-
I just was curious how bad being on dialysis is. Not everyone has the option for a transplant or doing home dialysis and we all can choose to die instead of choosing to live.
River, it's different for everyone.
Some of it is physical, of course. The process doesn't work as well for some people as it does for others.
The treatments for anemia aren't always as effect as they can be for others. Plus male patients are kept permanently anemic, which just makes it harder for some of them.
Some people experience constant pain during the treatments.
Some of us have a harder time with removing fluid. Most patients are told they can have a liter of fluid a day. Personally, I could only stand half that much or hemo was a constant misery, with repeated blood pressure crashes and headaches. I coped by cutting down on fluid drastically, but that's no easy fix either.
The constant thirst is always an issue, and the food cravings are as well.
A huge portion is mental, though. I know I found it easier to cope with the fatigue than a lot of men do. My favorite hobbies have always been reading, sewing and crafts. It's possible to do these and expend very little energy. For anyone who lived for an active lifestyle though, the inability to do what they enjoy most is devastating.
Add in the diet restrictions, the inability to work and support your family, the horror of watching your health decline - none of this is easy to cope with mentally. Some people have a better family support system to help. Some people are just better at it than others. Ideally, those like Beachbum who feel they have reached the end of their strength will make sure that they are not succumbing to the depression that comes from ESRD-induced chemical imbalances. Depression isn't the only reason people choose to quit, though. We've all got the right to say, "I'm done."
Personally, knowing I was making a choice to carry on when I had another option is part of what kept me going when things were the worst. It was MY choice.
-
Jbeany thank you for the post. guess i wasn't thinking it thru. I just don't want him to die
-
I know each has the 'right' but this one just seems wrong.. It's easier to accept in some situations, but i do so hope that he has rethought this and comes back to share how he overcame this decission. Bless you, It will make us happy to embrace you if you decide to return.
-
jbeany;
I read your comments closely. Here is my comment:
I have lived an active lifestyle and I am still complaining about giving it all up. I am not coping well. I have my wife and no one else for a support system. I stay on a friendly basis with the important people at the dialysis center, yet, I don’t believe everything I am told. This forum is a lifesaver for me. I grunt and groan a lot here, often unnecessarily. To cope I did the following:
1. I drink all of the water I can.
2. I eat everything in sight.
3. I do not take binder pills.
4. I have some pain.
5. I still own a Harley.
Then a strange thing began to happen; my blood work numbers began to improve. Hemo went over 10, Creatinine dropped to 2.7. Okay, I am not the poster-boy for dialysis. Shame on me! I just cannot get over the idea that there isn’t an answer to every problem we face. Maybe I am killing myself. Maybe not. I am 73 and most people say I look about 50.
Taking one’s own life is rude to the creator of that life, if you believe in some religion. Taking one’s own life for other reasons is mostly about giving up, and I don’t like giving up.
I’m going to get another glass of water.
In about 5 to 10 years I will be legally blind, my hearing is below 50%, I cannot watch TV or a computer monitor, or read a book for more than two hours without my eyes clouding over.
Damn, that water tasted good. Life is a gift, do not throw it away.
gerald
-
Yet Gerald you still have a Harley and that's a good thing. It could be an art piece if so wished to move inside :2thumbsup;
As for vision, I use video magnifiers, pc software, cane, and soon a guide dog to not slow me down, health does that plenty enough! :sarcasm;
Where there is a will, there is a way to cope
-
Shame on me! I just cannot get over the idea that there isn’t an answer to every problem we face.
Just deleted a whole bunch of 'stuff' i tried to say... Guess i'll just leave it that ................ well, i feel ya
ps/or edit.....Was just trying to say, or agree with Gl......as in, Im a 'fixer' and also 'cannot' accept theres not an answer to every problem we face :(
-
Beachbum, everyday I think of checking out, EVERY SINGLE DAY.
To spare the details, lets just say this shiiiit sucks! Living in constant pain and discomfort is not living in my book.
Maybe it's my karma. I tried to live a hassle free life, now I have to deal with nothing but hassle after hassle. It's just not my thing!
I had hopes and dreams which are no longer possible because of this condition. So why go on living if what I lived for is gone right? So I don't blame you one bit.
Sure there will be people who will miss me, and I will feel like a selfish mofo for doing it. But when I get down to pulling the trigger I start to make a list of all the things I need to get squared away first. And I realize life is just too short to get all of it done.
That may only be partially true, I'm stuck at work 40 hours of the week and in a chair getting getting treatment done 15 hours out of the week. So that delays me in getting what I want done. Also not having enough energy on my days off and just wanting to sleep delays getting anything done too. Seems like I should just forget about the bucket list huh?
-
beachbum, I'm really looking forward to hearing something from you.
-
I wonder if ending treatement can technically be called "committing suicide" because if you think of it, our lives are only being kep going by dialysis. I consider it as letting nature take its course. In our circumstances I don't feel that it should be viewed as a selfish act in our situation, since we are having to go through so much that people generally don't have to go through and have any concept of what having kidney failure means, both physically and psychologically.
-
I'm at a loss right now. I come to the IHD site hoping to learn and be ok with living with this disease and now I'm thinking who the heck am I kidding? Now it's a waiting game for me to begin life as hell
Maybe i'll be the lucky one and just die in a car crash or something.
-
I wonder if ending treatement can technically be called "committing suicide" because if you think of it, our lives are only being kep going by dialysis. I consider it as letting nature take its course. In our circumstances I don't feel that it should be viewed as a selfish act in our situation, since we are having to go through so much that people generally don't have to go through and have any concept of what having kidney failure means, both physically and psychologically.
It is not. Even the Catholic Church does not consider it suicide.
-
Riverwhispering,
Dialysis is NOT the same for everybody. This August will be 16 years my husband has been on dialysis. I'm not going to lie and say it has been a walk in the park but overall things have been good. Luckily he does not have any other health issues besides kidney failure. He was born with kidney reflux and had surgery when he was about 12 to have that repaired but the damage was already done. He was 38 when he started dialysis. He has been very active over the years. He cuts all of his own firewood and does all the maintenance around the house as well as a lot of carpentry and metal work. He usually has as much energy or more than me. Like Gerald I am his support only system. He does take a very pro active role in his dialysis. When he was in center he always questioned everything and wanted to see his lab values and wanted the machine turned towards him during treatment so he could see what was happening.
He does have his times when he feels down and depressed and that is normal. They are nights when he would like to be able to throw the dialysis machine as far away as he can but most times he counts his blessings that the machine is there as a treatment. If dialysis wasn't available I would have been a widow 16 years ago!!! So I am VERY thankful for it!!
-
Okarol, didn't you pm him? Did he ever reply?
-
Riverwhispering, if you are able to do home dislysis, either PD or home HD, then it isn't so bad. As others have already said, everyone copes differently, and having read your posts already I am confident that you are a coper. I know that we shouldn't have to cope, but that is the hand thst we have been dealt. How we play that hand, is up to us. I am not saying that there aren't times that I hate every aspect of this, but I get over it. I have never been afraidto ask for mental health help when the need as arisen. One of the worst things to do, is to start the 'why me?'thoughts. I rationalise it by thinking 'why not me?' since I everyone nust think the converse and there is really no reason for this to happen, it just does.
-
River, I wasnt pointing any fingers or anything, and there is nothing wrong with anyones opinoin, everyone has one, it was some comments, that were directed dirctly to the person who is hurting, that isnt good in this situation. Thats all i was saying.
I dont think stopping treatment would be active suicide, because "god" or whoever chose this path for us to endure. If it were 100 years ago, we would be dead. Technology is the only thing keeping us alive. Its sort of depressing to think of it that way though.
I think this all boils down to perspective. Some people chose to lay down and not fight, others fight til the last breathe is exhaled.... Some people think of this as a death sentence, others think of it as a new chance at life.
This has changed me, and i think the change was for the good. I have my down days just like everyone else, somedays i want to give up as well. I think even people without health problems go thru this. its nothing new.
I often wonder where my life would be if not for this having happened. I know for a fact, I wouldnt be as happy with my life as I am now. That may sound crazy, and I wish i wasnt unwell, but ive grown as a peson, meeting others with this problem, taking time to enjoy the small things most people take for granted....
-
I am very concerned about Tommy “beachbum”.
Is there a possibility to phone him at his home in Boston, MA?
Is there a way to contact him?
Thanks from Kristina.
-
I think this all boils down to perspective. Some people chose to lay down and not fight, others fight til the last breathe is exhaled.... Some people think of this as a death sentence, others think of it as a new chance at life.
This has changed me, and i think the change was for the good. I have my down days just like everyone else, somedays i want to give up as well. I think even people without health problems go thru this. its nothing new.
I often wonder where my life would be if not for this having happened. I know for a fact, I wouldnt be as happy with my life as I am now. That may sound crazy, and I wish i wasnt unwell, but ive grown as a peson, meeting others with this problem, taking time to enjoy the small things most people take for granted....
You know, I never looked at it from this point of view, GLM. Very well put & said!
lmunchkin
:kickstart;
-
I PMed the original poster but, I felt like sharing my story.
Dear beachbum,
I did and am doing what you are doing. I understand your choice and I know that path of gathering the courage to say the torture has become too much; when death seems like a much deserved reprieve. But it may not turn out the way you think...
My Story
I was diagnosed on October of 2009, I lost my job in February (at a biotech venture capital firm) in Feb of 2010 after an ill-fated business trip. I continued dialysis and my health declined. I lost weight and was constantly ill. I was never popular and while I live in the town where I attended college or at least close to it (currently in Cambridge). I never made any friends there. After the diagnosis my life crawled to a halt and my few acquaintances quickly "lost touch". My whole family lives across the country and don't have the financial means to visit often and nether can I. Dialysis was hell. The stench of it, the ineptitude of the center techs, the complete dismissal of my doctors. I felt as though I was left her to die a slow, painful, and increasingly delirious death. All exacerbated by the issue of the drunk techs on Friday night shifts. After I reported the incident the I wound up in the ER after the next shift and I doubt it was a coincidence. My doctors gave me the same dog and pony show.
I missed an appointment and they told me it was a test. When I became too weak to attend dialysis and they held up my transplant stating I didn't deserve a kidney and I HAD A DONOR (both my BF and sister were a match). I made sacrifices to do as I was told. I made it to my meetings forcing the additional title chauffeur on my bf /caregiver, to the detriment of or relationship. Then dialysis and the extreme dehydration made me unable to eat and they held up my transplant evaluation once again stating; I now had to put the weight back on. I actually started recording the process because I felt the ludicrousness of it all had to be obvious to any third party. Though I think I was too emotional to really get my point across. So I threw my hands in the air two transplant centers, four dialysis units, 3 nephs, countless hospital stays and surgeries plus hours of bureaucratic run around. I said, "no more." I had my catheter removed and said, "F&ck it all". I waited and hoped that all those promises from my doctors of dying in my sleep would occur as my lungs filled with fluid and my heart stopped beating. And I really thought I had won, I will no longer have my life dictated to me, I was back in control. Now here is the weird part: that was a year ago. I have awoken every day thinking I should be crawling closer to death and no such luck. I feel better, my new doctor's understand that dialysis was probably premature. So I have restarted the process found a hospital, PCP and transplant center who would work with me (Tufts can get F*cked btw). I would highly suggest Beth Israel Deaconess its been amazing and my PCP's husband is my vascular and future transplant surgeon and after being extremely hesitant, I l love them. I haven't been able to say to her how much her compassion has been a beacon of hope in this very dark process.
But here's the catch: The pain that led to me wanting to give it all up hasn't gone away. I am still sad and lonely and it could be a symptom of how medical professionals in the area deal with us patients; it could be because of a lack of any real support group in the area, regardless these are issues that you still have to process. So I want to reach out to you and say do what you like, and I support whatever decision you make but regardless of the outcome you need to talk to someone about your feelings. This diagnosis and treatment is and can be extremely traumatic and cudos to everyone else who is superhuman and can take it like a G, I couldn't. I lost too much too fast and Lady Fortuna (that heartless b*tch) has forever changed the course of my life and I have to give my self permission to grieve. I'm only 5 and one half years out of college. I haven't completed the process (I've barley begun). I am in the middle of the run around of finding a psychiatrist/ psychologist and then I have to overcome the hurdle of being as honest with them as I have been here. But I am trying to get to a better place. So I'd like to offer a sympathetic ear, some coffee or a meal, pm me I'll give you my number and email, at least someone nearby understands and cares and maybe we can help each other.
To everyone who felt beachbum's comments deserved to be condemned. Please remember to have some empathy for every member of our community. I know his decision flies in the face of everything you fight for daily but we NEED to support one another. He is hurting and your caustic words are not the type of tough love needed, you have NO IDEA what the details of his story entail. A little regular old love and a sympathetic ear would have been far more suitable, I think.
-
CALM, thank you for sharing your story. I hope you find a professional to whom you can talk and who can help you find your way through this hell.
You bring up a point that begs the question of what form does "support" take? When you are trying to help someone you've never met, with whom you have only a very passing acquaintance, and THAT's just through a computer screen, what do you do? Do you offer a sympathetic ear or do you try the "tough love" routine? How do you know what will work?
It would be far easier to not say anything at all. We are not trained to talk someone down off the proverbial ledge. But a lot of people came on to this thread and did the best they could. Some of the responses are from people who have come to terms with this fate, but some come from people who are still struggling, and their responses probably mirror what they themselves need to hear.
I hope you are successful in your attempts to reach out to beachbum; I hope he replies to you. Thank you for your kindness.
-
cuteangrylittle muppet- very heartfelt post- thankyou. No one here can really understand the reality of each others lives, while I hate to see anyone sucumbe to despair. I do hope Beachbum is still with us, and can get the help he needs to feel some hope, because just think how severly dying limits your options. Dont go quietly.
-
These posts....they make me very sad.
On many levels, tears have risen into my eyes...
Ive been on that ledge...long before dialysis i tried a few times to commit actual suicide. I sometimes wish I had succeeded BUT on another hand im soo glad that i didnt.
I wish I could hold u all and say it will get better, but I know that is probably not true for many people and it doesnt help...
i know my words arent very comforting, but I would like to offer up something i wrote today for a self-injuring group i belong to. (yes, i am a recovering self harmer)
Some of It may not apply, but it also has some good tips and tricks to have "feel better" moments.
http://mamadork.blogspot.com/2012/02/alternative-behavior-techniques-for.html
I only hope that one day all of this sadness and hardship will have been for something. I have faith that we go thru these hard times for a reason unforseen.
Much love to you my friends. :grouphug;
-
I don't mean to be the tough love type person when someone is talking about choosing to hold back dialysis and just die. It just makes me very sad to know someone's life is that bad. I've known three people that were loved ones of people that choose to die.
I talked on the phone the other day with a friend I haven't seen in over 30 years. She said her husband lost a leg in a motorcycle accident and she has Parkinson's disease. Talk about someone sounding extremely depressed.
I don't know but there must be someway to hate dialysis but not hate living. With all the depression and stuff going on here I'm amazed that anyone is sane. This is a hard place to be for someone that hasn't started dialysis. I was scared before and this place is making me think why continue living since it's only gonna be hell from now on.
-
I don't know but there must be someway to hate dialysis but not hate living. With all the depression and stuff going on here I'm amazed that anyone is sane. This is a hard place to be for someone that hasn't started dialysis. I was scared before and this place is making me think why continue living since it's only gonna be hell from now on.
River, that's just it. For some, dialysis hardly slows them down. That was how my husband saw it.... Sure, it was inconvenient. But the time that he was NOT on dialysis was LIFE!
You have no idea how your body will react to dialysis until you get there. Please don't waste the beauty of life BEFORE dialysis by making yourself miserable thinking about how bad it could be when you need to go on dialysis. Instead of focusing on those who don't do well, look through these forums at all those who are living full lives despite dialysis.
Aleta
-
Very well said Aleta!
River, it just affects people differently. Some can mentally & physically handle it yet some don't. We are all in this together and show support where necessary. Just because someone wants to stop does not mean people are happy about that fact, but that we understand why.
I know my J. has expressed stopping, but has not as of this moment. I do dread the day he is serious about it, but I will honor his wishes. Since starting NxStage, he hasnt said anything about it. I believe this modality has really helped him immensly, NO, I know it has helped him!
He has been through alot in over 7 years, but he hasn't given up. He is a fighter! I will fight with him, with every fiber in me and He knows it!
Its just some handle things better than others. We all have them days, thoughts, ect.... This most likely is where Beachbum is at. I hope not, but if it is, then I will totally understand his wishes!
God Bless,
lmunchkin
:kickstart;
-
Thank you to everyone who has reached out both privately and publicly. :bandance; :grouphug;
River-
I really don't want to cause you to fear what is happening. I would judge that since you have already found this forum you have taken the first steps of addressing your fears and asking for support (a huge leap in the right direction). I fail miserably in that arena. I've always tried to be tough and keep up the "nothing in wrong with me facade". I won't lie, my situation has been hard but it caught me completely by surprise, I got no transition. It won't happen like that for you. You'll go to the doctor and they will discuss your options (at length) with you and you will choose your modality. I would highly suggest PD to avoid the hemo centers completely if possible or start the process towards home hemodialysis another fantastic option.
And those days that everybody pisses you off or you have an idiot tech or nurse, come here scream at the top of your lungs. Blow off some steam, we'll be here.
So is any dark moment you will never have to suffer alone; that's why I'm here. :cuddle;
-
River it is scary, but you wont know how you feel until you do it. Everyone is different.
it could be a huge relief to someone who is very sick before starting, where it may be hell for another.
This thread IS depressing, but its a part of life. Not just life on dialysis, but life in general.
-
First of all; no one ever accused me of being sane!
The best attitude about dialysis is that it is inconvenient. I grumble and complain but I’m usually searching for information. The more I know about renal failure the better I understand it, the better I tolerate it.
About beachbum; if the Dude wants to off himself, then he should. We have all had an opportunity to communicate our feelings in the hope of persuading him to take another course of action, and that is all we can do. If I were sitting next to him now, I’d drag him out to some place where life is abundant and active, and I’d make him participate – like a topless beer joint. But I am not there and he has gone silent.
Let him rest.
gerald
-
I'm concerned that if he did end his life with a gun that his family will come looking for answers HERE. I'm not sure all of our words were kind and encouraging. I didn't know what to say to him because I've felt the same way before. But, the bridge between dispare and hope is a good night sleep. Maybe I should have said that.
Let's go on with this thread with what we "should " have said.... ???
-
Not to say that this is the case this time, but it has been my experience that if someone is truely considering actually killing themselves, not stopping dialysis,but actually actively killing themselves, the dont broadcast it. it would be rather pointless, dont you think? too many people could stop the act. If someone truly wanted to harm themselves, the would not tell anyone, and they would just do it. its a "selfish" act and nobody who wants to do that wants to feel others concern.
ive dealt with many people who have tried, or wanted to, and i myself have tried.
if he did, it was not anyone here's fault. He made his choice, I hope it wasnt that one, but reality is we may never know, But next time someone presents with this, words of care, rather than tough love, would be encouraged...
Tough love never helps a damn thing when dealing with this...
-
The owners of IHD have no liability regardless of what was said or by who said it. This forum solicits opinion and in America that is held sacred by the First Amendment. For those who wish to argue the point; nobody shouted the equivalent of “fire in a crowded theatre.”
Regarding beachbum; my experience with renal failure and no dialysis tells me he has about a month to six weeks. I had a partially functioning kidney and it took about six months before I was rendered unconscious with two weeks to live (per the Doctors). He will feel so miserable that just dropping dialysis that his opinion might be changed. He may be hospitalized in any case as a “5150” – a danger to himself and others. “Tis the law in California.
However, I suspect we may never hear about him again and we will all wonder about him.
I never considered suicide. I asked about it, or, rather I asked how long it would take to croak without dialysis. I live for information. For me, that helps.
As for the criticism about “tough love”; I have lost my oldest daughter, my grandson and others to tragedy. Perhaps I have emptied my grief cup and there is nothing left.
-
I am very concerned that Tommy “beachbum” did end his life with a gun at a vulnerable moment
when no one of his family was around to talk him out of it.
It seems the only communication he had was IHD via a computer.
He made very clear that he felt IHD members did not comprehend
what he was really going through.
He had no hope. He was too deeply steeped in his desperate situation.
He had lost all hope to find a way out and he must have researched on the Internet
a secure way to commit suicide because the Internet recommends using a gun.
It has been said it “was his choice” to end his life.
Was he not too much overcrowded to make a choice ?
I would not be surprised if he never came back again, even if he is still alive.
We can’t really expect him to “entertain” us further with his despair
and this thoughts about throwing away his life?
It does not help him if our failing is due to the fact that
we “have emptied our own grief cup” and the “if’s” and “should’s”.
It concerns me how Tommy was treated in his total despair, turmoil and isolation.
He came to IHD for help and we failed him terribly. He was left on his own.
It concerns me further because I am pre-dialysis and I have not experienced dialysis yet.
I feel now that if I have any problems concerning my survival
I could not communicate my thoughts with IHD members.
I do not comprehend how terribly we failed him.
Do I by any chance misinterpret what was going on?
I am still very confused about it.
Thank you from Kristina.
-
I don't think "we" the IHD family have failed beachbum by our comments. We have expressed our thoughts on what he posted and maybe we didn't say what a professional Councillor would have said but this is a forum of people that have CKD or caregivers of people with CKD. I mean duh.
When I first read his post I had the feeling he was in a major depression but was just pissed he wasn't getting his way with the transplant business. I felt he was just venting and making it a super drama like the kid that doesn't get his way and takes his ball home so others can't play. I know I could have misread what he was saying and I'm sorry if I made his life worse with my comments. I don't want to be the straw that broke the camels back by pushing him over the edge. etc....
I'm here for support and to vent and that's what I've been trying to do. I hope that when I get a response from someone it's from their heart and that's all I want. No psycho babble just heart felt thoughts.
I want to thank you that have responded about my fears. It has helped a bit.
-
What follows is totally my own personal opinion.
I have finally had a chance to catch up with this thread.
SOme posts here have really pleased me, and some others have disappointed me.
I can understand what some have been trying to do - to almost use a bit of reverse psychology or similar to snap beachbum out of it. Maybe it worked, maybe it didn't. I also think GLM had a very good point that most people who really do consider and follow through with suicide do it quietly.. saying you'll do it is a clear call for help.
Some here have responsed, some have contacted the admin team with concern, others have attempted to contact beachbum privately I know.
There are no right answers I think. I would olike to think each and every person here who read the OP wanted to support someone clearly sending out a signal. Is it seeking attention? Of course it is - in any way you look at it - but isn'tit better to seek some kind of help, even if it is in this kind of way, than just silently go off and nobody has any idea of what or why?
Personlly I feel sad that beachbum, at the young age of 38, feels (or felt?) so frustrated with his situation that he felt the only solution was to end it. I'm not much older and while I do have the wonderful gift of a transplant, I don't have many friends and well 1/3 of my close family currently refuses to talk to me. Yeah. I've lost the sign in one eye.. it's not all rosy but it's life, and I'll take it with its ups and downs. I can still do a hell of a lot and experience a lot. I'm sure more crap will happen to me.. but again that's part of life. I can't pretend to know what it's like to be in beachbum's shoes but I've been depressed before - sometimes with kidney disease other times with life in general. It's not easy. I wish, wherever he is now, he does have some peace and if he's still with uis, maybe reading still, I hope you find a way through to a place YOU are happy with.
My own mother decided to end treatment when she had a DVT related pulmanary embolism and basically was in a catch-22 situation where her organs were being killed by the drugs she was on to kill the pneumonia which was killing her. She saw no option but to go out on her terms with some dignity. So I have seen that myself. I saw how at peace she was with her decision and the final few weeks we had her were some of the better ones because of that - so from that point of view I can totally understand where bb was coming from with his thought processes. In a way I was able to cope better with my mother's passing because I knew SHE was at peace with her choice and went on her terms and had the chance to say goodbye to us in her own way. I am not saying the situation is the same at all, but I do have some empathy for that way of thinking.
I hope if bb is out there still and reading... however attacked or upset you feel about some opinions posted here hopefully you take from this that everyone who bothered to post something actually did so because they cared enough to post.
-
Beachbum hasn't logged back in since the middle of the night when he made his last post. His decision makes me sad and a bit scared for my own future. If he did commit suicide that night, I'm thankful that he came to tell us goodbye first. If his goal was to ask us for help, I'm sorry we let him down. Whatever his decision, I hope he finds peace. I remember the despair, rage, and frustration I felt when my first transplant center didn't work out. I was afraid it meant I wouldn't be able to be transplanted at all, not because I'm a poor candidate, but because of their politics. From that regard, I can understand a bit of what Tommy is saying.
-
I've watched this thread and resisted the urge to jump in - I think I don't do spontaneous well, and was thinking those who can relate more were handling it very well.
I will say I've had relatives who have gone through some severe depression, one described as being hit by a truck and having people standing around you telling you to get up! -kind of hard. Through the grace of God and some support they got through it - and if BeachBum is still out there, all I can say is give it some time, take care of yourself as much as you can, find somebody or people to lean on: someone close, someone spiritual maybe, possibly someone professional - or all three! I've heard depression described as anger turned inward.
-
when i was working the rig with dh, we would get calls that were horrendous. we'd get to the scene and jump like lemurs trying every intervention we had. sometimes it worked, sometimes it didn't. my dh said to me on one particular bad call, that when the tones went off, we'd go and work like mad to do what we could. but if it were that persons time to go, it was already decided before we ever got there.
Gerald and Richard and others..love you..
BeachBum: i hope your getting some help and decide to live. if not, i hope your in a peaceful place and your wife is surrounded by those who can help her too.
i don't think there are many here who can't relate to this..be it patient or caregiver. and no one can know what they will do until they are in that situation. much prayers brother.
to the transplant team: go to the administrator of the hospital. never forget to remind those that are making these decisions to: "smile, your on youtube"..
-
I have been so upset at some of these responses that it is difficult for me to write about it. Richard, as usual you have this remarkable and very nearly magical ability to make me feel better, even though I cannot pinpoint exactly what it is you said. Must be the accent. :laugh:
Thank you, GLM, for saying so much of what I wanted to say. And CALM (I love that your screenname reduces to a soothing acronym) that was such a generous gesture, I really hope that Tommy takes you up on it one day because it sounds like the two of you could really help each other.
I do want to correct the common misconception that people who talk about suicide never do it. That is the myth that nearly brought down my marriage. It simply isn't true. Much as people seem hell bent on believing it despite all evidence to the contrary, I will say over and over that it is FLAT OUT FALSE. If you are American and think about the legacy of suicide that runs through certain families, you probably will all come up with the same name: Hemmingway. Ernest Hemmingway wrote a Nobel Prize winning cannon of work, these were books he knew the world would read, and he included discussion of suicide. He contracted with his then-8-year-old son that neither one of them would kill themselves. It's a hell of a way for a child to learn that contracts don't generally work. Anyhow, I once asked a psychiatrist to comment on this belief and he immediately said 'Oh, no. Quite the opposite. Most people who kill themselves will talk about it first.'
Can't you see the problem with setting up this test where you are essentially saying 'the only way to prove to us that you are serious is to kill yourself'. It's a hateful message. What does a little compassion cost any of us? If it bothers you so much, just don't respond, this is not the time for speeches about how we have it worse than he does. Comparing suffering - oh, how I hate it.
I personally did not think Rerun was alluding to a legal consequence if his family comes here for answers, they will be looking to answer the question why. I would be shocked if they ever were to post, but if his wife were to come on here, for example, would we want her to read our responses? This is not a question of legality but humanity. Who we want to be as a support forum.
I find it hard to believe that there is a single person on here who has not experienced depression on some level, but for that rare soul, let me try to explain. The bad ones feel like you are drowning, literally like you are not sure you have the will to breathe in the next moment. You are drowning and you cannot find the words to explain to anyone that it obviously does not look like you are drowning, but you are. Trying to convey anything coherent in that moment is well nigh impossible, but people do and not surprisingly it doesn't always make perfect sense or sound like it is any impossibly huge obstacle if you are not sat right in the middle of it living it. When you are drowning, often all you can think to shout is 'hey, help, I'm drowning' and then to be subjected to an argument about whether you are really, truly drowning or not, it makes me sad and frustrated for Tommy.
Anyhow, in the end, if he did kill himself, I agree, no one here is to blame. I truly believe that.
-
I have searched through the Boston Herald. I have looked through all the local stories and the obituaries and do not see anything about a 38 year old man or anyone named Tommy, Thomas or Tom. I hope that is a good thing and he is just taking time off from this site and is getting better.
-
hey
has anyone have "beachbum" on Facebook? I have a few people who are on here who are also on Facebook. Maybe if he has not been on IHD, maybe he might of been on facebook.
I feel bad for him. Because Ihave been where he is at. LikeI have posted the thread "I wish someone would kill me and put me out of my misery". To me usually, I think this is the ultimate nightmare. I just wanted to let him know it is not alone.
Noone has mentioned this, but at some point, if you believe in it, you have to give it up to God.
Lisa
-
I have searched through the Boston Herald. I have looked through all the local stories and the obituaries and do not see anything about a 38 year old man or anyone named Tommy, Thomas or Tom. I hope that is a good thing and he is just taking time off from this site and is getting better.
Thank you, YLGuy for searching through the Boston Herald
and looking through all the local obituaries, stories etc.
I am so relieved you could not find anything about Tommy.
I very much appreciate that you took the time to do that.
Thanks again and kind regards from Kristina.
-
There could be many things unbeknownst to us that have converged to make beachbum's life so miserable at this particular moment. I don't think that a disagreement with a transplant center is enough in and of itself to cause someone to want to end his life. There must be much more to this story that he has not shared with us, and this is why it is so very hard to find just the right words, especially over a computer screen.
There have been four pages of responses; that, to me, shows a lot of care and attention. Some might feel that not everyone had the "right" words, but how much worse would it have been had no one responded at all?
-
I've read through this whole thread though I have no comments regarding beachbum out of very sad, these types of discussion often make me wonder.
Think about it for those on here who are or have been on dialysis. If we were born say 100 years ago none of us would be here. So is stopping treatment really a form of suicide or just letting nature take its course. On the flip side if we were born 100 years from now maybe they could grow a healthy kidney from our stem cells and transplant that and never have a problem with rejection.
Why us? Why now? Why do we seem to be stuck in the middle of no cure and a full cure?
Something to think about.
Bill
-
There could be many things unbeknownst to us that have converged to make beachbum's life so miserable at this particular moment. I don't think that a disagreement with a transplant center is enough in and of itself to cause someone to want to end his life.
I disagree with that last bit. There is no such thing as enough or not enough - we are talking about major depression and that is always enough. Kurt Cobain killed himself, Freddie Prinze killed himself. These were people who on the surface had everything and I have no doubt were told by well-meaning but misguided individuals in life that their problems were not enough reason to kill themselves. All that does in the end is minimize the person's despair and pile on guilt that you should be happy but you're not. That is my general feeling on the topic of why people choose to kill themselves.
My specific feeling about Tommy is that he had a close friend complete suicide (red flag) he was traumatized by a war experience (red flag) he feels isolated from his family (red flag) and has just been told that he cannot have a transplant not just at that centre but anywhere because he failed some secret test. Now, I have no doubt that he could overcome all of this and anything else that has gone wrong in his life, but that takes time and I can only hope that he will give himself that time. Honestly, those eval people should be imprisoned in my opinion, but they can rest easy in the knowledge that no one ever listens to me.
-
My specific feeling about Tommy is that he had a close friend complete suicide (red flag) he was traumatized by a war experience (red flag) he feels isolated from his family (red flag) and has just been told that he cannot have a transplant not just at that centre but anywhere because he failed some secret test.
Uh, I think you just proved my point.
-
My specific feeling about Tommy is that he had a close friend complete suicide (red flag) he was traumatized by a war experience (red flag) he feels isolated from his family (red flag) and has just been told that he cannot have a transplant not just at that centre but anywhere because he failed some secret test.
Uh, I think you just proved my point.
He told us these things, so it is not unbeknownst to us.
That is why I broke it down into the general and specific. Specifically, he does seem to have a lot going on. Generally, it is always enough if the person perceives it as enough. It is a mistake to dismiss anyone's struggles as not enough to be feeling suicidal.
-
Okay, you're right again.
-
Okay, let me thoughtless and insensitive here!
What is my responsibility to beachbum?
gl
-
Okay, let me thoughtless and insensitive here!
What is my responsibility to beachbum?
gl
None, in my view.
-
Okay, let me thoughtless and insensitive here!
What is my responsibility to beachbum?
None, in my view.
Only the responsibility we have to each other as fellow human beings. I suppose everyone interprets that responsibility differently, but it is there nonetheless.
-
I would prefer to think of it as having compassion. To say that Gerald has some responsibility to a young man he's never met is placing an enormous burden on him, and I don't think that is fair.
I think about all of the times I've come onto IHD and spilled my guts in my deepest, darkest moments, and NEVER did it occur to me that any of you had any responsibility for me. That would imply that all of those IHD members who didn't reply to me somehow failed me, and I don't think that is true.
Just my 2 cents.
-
The very nature of catharsis is to share the burden with someone. Beachbum was seemed to be seeking some way to unload his burden. What has engaged me is that beachbum’s experience is not that much different than just about any other member here. I offered words of support and help but he disappeared. Absent the establishment of a trust, I have no emotional obligation to him – nor do I wish to share his burden.
Personally, I see the exercise of focusing on ones burden as depressing in and of itself. Life is to live and that is exactly what I told Mr. Beachbum. Sitting here and reading posts on this forum is uniquely depressing, and in doing that I am reading about other individuals problems, which is cathartic for them. That is why people post here.
Listen, I am going to die someday, probably soon. So are all of you. In my case it is likely to be a result of something related to kidney failure. I wish to learn more, so I seek out the educational aspects of various threads. In that way I can ease the emotional strain I do undertake. In Mr. Beachbum’s case; different strokes for different folks. If he were emotionally stronger, he would not have written what he did.
Who is responsible for contributing to his character makeup?
gerald
-
"If he were emotionally stronger, he would not have written what he did."
I disagree. He told us about a lot of crap that he has been through. We do not know what else he has been through. I do not believe we can make that determination.
-
Our character is determined by many experiences, none of which happened on I hate Dialysis for Beachbum.
-
Okay, let me thoughtless and insensitive here!
What is my responsibility to beachbum?
None, in my view.
Only the responsibility we have to each other as fellow human beings. I suppose everyone interprets that responsibility differently, but it is there nonetheless.
I think you are both right. No responsibility whatsoever, but if you come onto a support forum and choose to respond to a post written by someone in despair, you have a responsibility to be compassionate.
-
Oh I totally do agree SOME people do commit suicide and talk about it first, its just typically the opposite. They arent going to say "im going to do it" then at that moment actually do it, you would have the opportunity to stop it. I know some people try anything to reach out before actually doing it. Even I did, just not with words.
Requardless if this was for some kind of attention, and in a way all of our posts are, its completely baffling to me why you wouldnt offer a kind word, or just not say anything at all.
sometimes in the grand scheme all we need is someone to say we understand, even if they dont really want to hear that, or believe it, its better than an attack or simply acting like u dont care.
I dont understand people, i never will. I dont think i want to...
lately, ive lost my faith in humanity, it was pretty slim before, now its... nonexistent
IHD is for support, isnt it?? why come here if you dont want to be supportive and understanding? Why waste time typing anything if you feel you have no ties to that person?
-
Cariad:
I think you have misread what I posted - or, that my intentions did not come through.
We all issued notes of support and compassion, including myself. That the man cut himself off from communications here, is an entirely different question. Some have tried to find him, others tried to search him out. All efforts have failed. Now what?
-
I did misunderstand what question it was that you were trying to ask, but my answer is still the same. You have no responsibility to do anything further. In fact, giving him the option to contact one of us or searching news stories in Boston are great ideas, but I don't think anyone on here should attempt to track him down in order to try to intervene in his life somehow. That crosses a privacy line, at least it would for me.
Must leave this discussion for now. Late.
-
Gerald - I think I get where you were coming from. Ya know...I was raised in a family that believed sh*t happens, you pick your self up by the booth straps and move on, keep going.
I have been thru some crap in my life aside from all the kidney problems and transplants. It never occured to me to take my own life. However, I did think often of "getting rid" of the people that were causing me all the grief. ;D Of course it was nothing like :Kit n Stik; physically getting rid of them. ;) I basically cut them out of my life. No contact. And it was amazing how much better I felt after that.
as I said, I was raised to pull my self up by the boot straps. My first transplant, I was living with my father at the time. My step mother is the devil period. So two weeks before my 1st transplant I moved out on my own. And went back to my own apartment to recover from the transplant in peace on my own (alone).
Beachbum (hopefully he is still out there) was/is dealing with more on his plate than he seemed to be able to handle at the time. I hope he did seek out some treatment. I trust he is ok and still holding onto some hope from somewhere.
-
OK I have some further thoughts.
No I do not think we have any direct responsibility to others emotional states or indeed what they choose to do - of course not. I do feel though that if we take the time to respond to someone's clear cry for help to perhaps consider the kind of mindset they would be in and how our responses may be taken (and I think that kind of idea also lies at the heart of ReRun's original question regarding what if his family come here seeking answers and see some responses). Of course this is a community made up of many varied people, experiences and opinions and I wouldn't want to be seen to stifle that in any way... I do think that there are times where some discretion can go a long way, or tact if you will. Please do not take this to mean I am suggesting any particular person or post didn't have that - this is a general comment.
We can argue back and forward what we think beachbum's motivations are/were in posting. The real fact is that we just don't know much more than the sum total of what he's posted on here. Is it fair to judge a person's situation, experiences and mindset based on that? No of course it isn't - even though we all do this kind of thing with almost every post we read from someone on an intenet board, unless we know them more personally. It's kind of like GL wrote that he's spent time in the military and other stuff and seen and done things none of us could imagine - by the same token we can't know or imagine everything for bb's life or experiences and frustrations bar what we read on here. Same goes for any of us.
It's often easy to sit back behind our computers and make judgements/assumptions about a post we read online. It's also easy to make a flippant response... what's not easy is that we don't know how what we write could be taken by anyone reading. In situations like this where we are a support community for a very serious range of conditions that do have life changing/ending outcomes I do think we need to consider how our posts may be taken by the audience, and with sensitive topic areas like this one I think that while there may not be a responsibility per se (as in, if I write something that offends someone else, I'm not responsible for that person's actions leading from that) but as someone else, perhaps Cariad or MM wrote - it's because we all have a measure of compassion and at times empathy for those suffering through what we're all going through.
At the end of the day though, whatever beachbum's decisions and actions were or are, of course, his choice and his responsibility as our all of ours.
-
I for one am glad BeachBum asked the question. It is a valid question. I would have asked it myself if i wasn't so worried about being judged.
I have weighed two options since euthanasia isn't legal 1. Stopping dialysis and let nature takes its course 2. Gun shot
Natural course: will get very very sick (puking and diarrhea), start to experience dementia, no real expected expiration time, people will have a chance to save you, you may get locked up under suicidal watch and unable to try again, could risk having a stroke and end up in worse condition
Gun Shot: messy, grousome, can be horrific to those who find you, no open casket, may not be eligible for insurance claims, will go to hell if you believe in that place, it would only be ideal if you were taking a bullet to stop a bank robbery or something like that
-
All there late criticisms made me go back and reread my initial response. I certainly didn't mean to sound like I had it worse than anyone, I simply expressed my experience with the same statement that Tommy made and offered a possible solution. I apologise if my post was misunderstood.
-
BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
I borrowed that from Richard for a few moments. Nice, isn't it?
And isn't that what I have been saying?
After re-reading this thread several phrases came to mind:
1. We are all individuals, therefore we all are different.
2. Men are from Mars, Women are from Venus.
3. I want to be understood, failing that I will be silent.
4. I don't know what else to say.
-
I still refuse to read Men Are From Mars and Women Are From Venus. Instructor couldn't get me to read either for class, not my type of book. :boxing; :P
-
I think we all could agree that if Beachbum is alive that hopefully someday when he is in a better state of mind that he will do at least one last post so we can put to rest in our minds that he's still alive.
He has if nothing else taught me and maybe others a lesson on two sides of the story and maybe a little compassion thrown in there too.
Myself I have trust issues since my life fell apart in Sept. I guess I'm skeptical more then I should be now.
The good thing Is hearing different thoughts on this ending treatment thread. I love you all xoxo
-
BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
I borrowed that from Richard for a few moments. Nice, isn't it?
And isn't that what I have been saying?
Gerald, I feel the same and have a similar tagline on my post as well.
I had a talk with two of my dialysis friends from my unit who were considering stopping treatments. One had extreme calcification of the heart vessels and needed heart surgery. I remember that afternoon well. We were all on for our afternoon dialysis and then after I got settled in for a nap, his nurse wheeled him in beside my chair. I asked him why he was not on yet and he told me that he was stopping treatment. He got frustrated, his needling didn't go well. He wasn't going to have the surgery and they told him while it was risky having it, not having it would be equally bad. Anyway, we talked for a while and then he said he'd let them try his needles once more. His nurse got them in no problem. He even decided to go for the surgery. Unfortunately, he passed before his surgery date. My other friend is still on dialysis today and is feeling very positive these days. His main complaint was that he felt useless and a burden to his wife. He always said that he "should have died 5 years ago" and that if he died now would be happy for the extra 5 years he got to be with his family. I told him that 5 years is fine but it's the past now, and your new goal is the next 5 years, and after you achieve that then the next 5 years again.
I can't blame anybody for feeling down, but nobody can say we don't know their situation. We're all on a shorter time table than the general population. Life is 10% about what happens to you and 90% about how you deal with it.
-
BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
I borrowed that from Richard for a few moments. Nice, isn't it?
And isn't that what I have been saying?
Do you really believe that's what you've been saying? Can you honestly reread what you wrote in that first page of replies - the ones that we know he read - and tell me or anyone else that you were trying to be encouraging?
I am actually trained, quite extensively, to perform crisis intervention and talk to suicidal people. Most of it is intuitive anyhow, which is why there are many examples of people like GLM and DesertDancer who seem to know exactly the sort of thing to say and I assume were never formally trained. I can think of several times in my life where I let my personal feelings get the better of me and did not say what I should have said and all I can do is admit that to myself and move on. CebuShan, I thought what you said was lovely by the way, but this shouldn't be about what I think, it should be about Tommy.
I also think that RichardMel's signature is wonderful and very much 'him' but is not appropriate as a response here, which is probably why Richard did not just say 'hey, read my signature'. Tommy had just been told that he would never get a transplant, maybe he could see his way clear in time and come to realise what a brazen lie that hospital was telling, but he was reaching out to us in the irrational shock phase. I have dealt with one hospital in Boston and this led me to nickname one of their doctor's The Wicked Witch of The East. She was the most humorless, angry, unfeeling doctor I've ever had the misfortune to speak to, and that is saying A LOT. Those doctors who know precisely how to make clear that they could not possibly care any less about your suffering, your despair, or even your life, are out there, and at least one of them lives in Boston. If I had the means and the time I would fly out to Boston and advocate for Tommy. I would delight at the opportunity.
-
One thing I wish I wouldhave thought to tell him, when i messaged him privately, was that I was told by my neph that I would never ever get a transplant, id never be able to lose the weight needed for one, and that no one will ever list me. That was in 2007, i believed it. But fast forward to 2011, and guess what? Not only did I lose that weight on my own, but I got myself listed, without any help from that jerk off doc. (can u tell i like proving jerks wrong??) And the first center I went to actually denied me, but the second one approved me...
Anywho, I decided to say it here, just in case he can see it, and just not replying.
-
Im just curious has anyone heard from him??
Has anyone have him on like, a Facebook? Has he been on any social websites like Facebook recently? Is he still alive??
Lisa
-
Cariad:
If you wish to wave credentials around, then I should tell you that I was the Executive Director Community Action Agency and that included a crisis lifeline operations before I was recruited to work in County Administration back in 1975. I am educated in behavioral science – small group dynamics and studied organizational behavior as a grad student. My wife is a career Social Worker and I was the Budget Director over her operation for twelve years.
This means I do have experience in cases like Beachbum’s. I also had two personal cases almost exactly like Beachbums – both survived. And, I was told I could never have a kidney transplant (due to cancer).
My experience says my judgment here was correct. Instead of talking glorious flowers and good will, show the individual that they belong among those who live life. Jolt them into reality if you must. Be a companion in life until they are improved. Show them a better way. If all we do is soothe a furrowed brow, your hand will be easily removed by the subject.
What you disagree with is a judgment call. As I said, “I want to be understood, failing that I will be silent.”
-
Cariad:
If you wish to wave credentials around, then I should tell you that I was the Executive Director Community Action Agency and that included a crisis lifeline operations before I was recruited to work in County Administration back in 1975. I am educated in behavioral science – small group dynamics and studied organizational behavior as a grad student. My wife is a career Social Worker and I was the Budget Director over her operation for twelve years.
This means I do have experience in cases like Beachbum’s. I also had two personal cases almost exactly like Beachbums – both survived. And, I was told I could never have a kidney transplant (due to cancer).
My experience says my judgment here was correct. Instead of talking glorious flowers and good will, show the individual that they belong among those who live life. Jolt them into reality if you must. Be a companion in life until they are improved. Show them a better way. If all we do is soothe a furrowed brow, your hand will be easily removed by the subject.
What you disagree with is a judgment call. As I said, “I want to be understood, failing that I will be silent.”
Oh, for flips sake. Feel better now that that's out of your system?
You completely missed the point of what I was saying in bringing in my 'credentials' as you insist on labeling it. MM had said none of us were trained to talk some one off the ledge. I have been specifically trained to talk someone off the ledge, but was trying to demonstrate that all the training in the world does not really matter as some people have a flair for this and some don't. I did not really need to know about your budgetary experience, or really any of your experience, but there it is.
You asked a question and don't like my answer, which is, no. I do not think you've been saying anything inspirational and Tommy was telling you outright that you were angering him. It is not about you. It is not about me. Maybe in 1975 they were suggesting that you tell someone that you would love to be able to 'kick their ass' in the midst of their suicidal ideation, but I can promise you that is not how they are doing it now.
-
there was a debate on tv with doctors for euthanasia and doctors against it. in the end it wasn't a moral issue, these patients weren't depressed or having moments of self pity. they were patients living with severe pain where everthing that was tried to help only made things worse. theres no talking them off a ledge. or even stopping them from walking into on coming traffic. its more like they were already hit by a bus and the bus was dragging them along the road for miles. so wouldn't it best to put them out of their misery?
-
you can try to help. you can try also to kick their arse..
in the end they must make a choice. or someone must make it for them (commitment to facility)
i'm a drunk. i went to many rehabs. was in/out the program longer than i could count.
when i got sober, it was between me and God only.
by the grace of God, if i make it another 2 weeks, i will have 12 years clean and sober.
by the grace of God, either Beachbum will have gotten help, or the alternative. i hope its the help part.
but as we say in the program, if you can't help them up, help them down..hit bottom faster.
if he was writing these things on here, a public forum the whole world can read, most likely he was also talking/telling to someone in his private life, and they took steps to intervene.
implied consent is one which means that if a person were in their "right mind", they would choose help and life.
i don't know where the line gets crossed and suspect it is an individual choice, right mind or not.
-
GL - thank you for the compliment regarding my signature...
:shy;
-
Well, I've read the entire thread as well, and avoided commenting, but I haven't seen anyone else say this, so I will.
His comments read like a drug reaction to me.
I've been through a lot with DH, and he's been on and off some very weird drugs. And there have been times when he started a new drug that he would become angry and abusive out of proportion to whatever situation was occurring. And heaven forbid I suggest at the time that he was reacting to the new med - when I tried that once or twice, he calmly explained to me how it had nothing to do with the drugs - everything he was saying was perfectly true and logical and he was only saying it because I suck so badly in ways he would carefully enumerate to me.
I'll tell ya, once or twice it nearly had an effect on his lifespan.
I've asked him about these conversations a few months later, and he's never remembered them. And once or twice he's said things like "Wow, if I actually did say that, I'm sorry. But I don't remember anything like that."
So, just sayin', while everyone's here psychoanalyzing him, it might not be "him" talking at all. It could be the chemicals you were chatting with.
- rocker
-
Very interesting thoughts about drug reaction & drug intolerance, rocker.
I do hope Tommy is getting help and support
to locate a helpful transplant centre and continue the transplant process.
I keep my fingers crossed and wish him good luck,
Kristina. :grouphug;
-
Beachbum, I hope you haven't given up on yourself. I know things look hopeless. But there is hope. In every good story there is a moment we storytellers call "Apparent Death" or the dark moment. It looks like curtains for the hero. But then things turn around, or what we call a reversal. The hero figures out a clever way to kill the beast. Sure, you might lose the battle, but if you fight, you might win, so give it a go. If you give up you don't have a chance. Fight your depression, and win, and at the end I'll buy you a root beer. :beer1;
-
Just wanted to update my status real quick. I haven't been online in a little over a week. I haven't even looked at the posts here but I see that its 6 pages long so I owe you guys an update.
I did stop D for a couple of days. Nothing really happened. I actually feel better when I'm not doing exchanges. I took a long drive to Maine. It was nice not having to worry about doing an exchange every 4 hours or so but it sucked to have to worry so much about what I could and couldn't eat. I still produce urine so I didn't gain a lot of fluid. I actually think i lost some weight because the treatments have caused me to gain almost 15lbs.
A friend of mine is visting Boston and attending the Sweet 16 at the Boston Garden in March. I have his tickets and was worried about making sure he got his tickets. I explained to him what was going on. He had no idea about me being on PD. I don't tell a lot of people anymore. In a strange twist he wrote me back and told me his dad is on PD and that he had just started almost at the exact same time I did. It was one of those moments that made me think.
Bottom line is I really lost it for a few days. But like anything in life if you are really going to get through it you have to accept the circumstances. I'm still pissed at MGH. I have a great PCP that I don't want to lose but everyone else sucks. I know how much these treatments cost my insurance and I don't want to give MGH another dime! There are several hospitals in the area so i'm going to see about starting the process over with one of them. I have no idea how to go about it. Like do I walk into their PD clinic and say, "Hey I want to be a patient here." The entire thing is still overwhelming. I'm looking into some counseling to help me deal with everything. All I can do at this point is take everything one day at a time.
I can't say I won't fall into this dark hole again. But I'm going to do everything I can to take back control of my life. At least do what I can.
-
You have no idea what a relief it is to hear from you, Tommy! One day at a time, sometimes, one minute at a time...all of us here will try to give you support the best way we know how, each according to his/her temperament and experience. So glad you're back and wishing you all the best!
-
The very nature of catharsis is to share the burden with someone. Beachbum was seemed to be seeking some way to unload his burden. What has engaged me is that beachbum’s experience is not that much different than just about any other member here. I offered words of support and help but he disappeared. Absent the establishment of a trust, I have no emotional obligation to him – nor do I wish to share his burden.
Personally, I see the exercise of focusing on ones burden as depressing in and of itself. Life is to live and that is exactly what I told Mr. Beachbum. Sitting here and reading posts on this forum is uniquely depressing, and in doing that I am reading about other individuals problems, which is cathartic for them. That is why people post here.
Listen, I am going to die someday, probably soon. So are all of you. In my case it is likely to be a result of something related to kidney failure. I wish to learn more, so I seek out the educational aspects of various threads. In that way I can ease the emotional strain I do undertake. In Mr. Beachbum’s case; different strokes for different folks. If he were emotionally stronger, he would not have written what he did.
Who is responsible for contributing to his character makeup?
gerald
I'm not sure how I'm supposed to take your post. To answer your question though, I am responsible for my character makeup. But do you know my character just from a few posts you have read here?
I regret posting here in the first place. But if you want to know why I did I think there are two main reasons. In my personal life I only have one "friend" that is also a kidney patient. I just recently met him and he has his own things going on right now. He just received his second kidney last month and not everything has gone as smoothly as everyone had hoped. I don't want to bombard him with my problems. I posted here because maybe someone else could relate and because I really wanted to know what would happen if I stopped D. My own doctors refuse to give me any advice on the subject.
Someone posted a link in this thread that scared the daylights out of me. There was another man that may have ended his life by stopping D. Not only did that scare me but in that thread someone else posted about what they experienced after they stopped D for 2 months. I read on the internet that dying from kidney failure was peaceful but what this guy wrote really scared me. He talked of having to sleep sitting up because he gained 40lbs of extra fluid. How his feet started to bleed and fluid leaked out of his legs. He ended up in the ER. It didn't sound peaceful at all.
You are right, we are all going to die. That we all have in common. Some of us will have to suffer, while some of us will die fast and peaceful. I'm not going to put myself through dying from kidney failure. At least not if I can help it. I know what it's like to be sick as hell. When I was 8 years old I was nearly put on D because my kidney had shut down. Thank God they were able to restore most of its function at the time.
I appologize for scaring anyone. That wasn't my intention. I really didn't come back here because I just needed time to think. I didn't even think I mattered to anyone. The fact that total stranger care at all about me is overwhelming to me. My own family could careless if I live or die. That's just the cards I was dealt. They are horrible people. I can't relate to most people here. I'm honestly a big wimp. I haven't went through a fraction of what most of you have been through medically. For that I am very lucky. I hate needles and medical stuff. Nothing scares me more. I was born to a really screwed up family. The stuff they put in my head growing up is stuff I can never over completely. They are heartless and cold. In the end it's all relative. We are all lucky in some ways and unlucky in some ways. We all suffer in different ways. I just have to figure out how to heal emotionally. I haven't figured it out in 38 years. I avoided it most of my life. I always ran from my problems. I can't run anymore. If I could I would.
I don't know if any of that made any sense. I didn't sleep well last night. That's another thing that plagues me. I get really bad insomnia where I don't sleep for days and then I start losing it. I just breakdown. Anyone that suffered from lack of sleep understands. At this point I'm just loopy. Hopefully I will sleep tonight before I start to get overwhelmed again. And the cycle repeats... Welcome to my life.
-
I don't post in these kinds of threads. I don't have communication skills a lot of people do. But I wanted to let you know I am glad you are trying to sort things out.Enjoy the sunrise, relax at sunset and hopefully tomorrow Will be a better day.
Pa,
-
Beachbum glad you're back with us. Of course I don't know you from Adam but I feel your pain in many ways and my heart is with you. Yes you did scare the heck out of me but I learned a great lesson in life from this thread.
take care and post often
-
Welcome back Beachbum! I'm glad to see you. :flower;
-
Beachbum,
Welcome back! :welcomesign; If I could hug you right now, I would! :cuddle;
I've been thinking about you and checking back here every day to see if you posted. I'm glad you are still with us!
Thank you for posting.
Best wishes,
Kevin's Wife
-
Thanks for posting, Tommy, I am so glad you are still with us !
I keep my fingers crossed and hope you have good luck with a helpful transplant centre.
Best wishes from Kristina. :grouphug;
-
I am so glad that you didn't do anything drastic. I know what you mean by a dysfunctional family. My mom is someone who everything is about her. When I was three years old she attempted suicide, and the ironical part is that she needed dialysis to save her. When I got ill I thought that it may jolt her into reality that all was not bad in her own life. No. Instead she harped on about how she was happy until I got ill. Really? I still interact with her, shes's my mom and life is too short anyway, to cut myself off from her. She's 70 now, so not so young and I would feel bad if she died and I was estranged from her. The point that I am trying to make is, could you try building bridges with your family? Try not to expect much from them, no-one who isn't going through this personally doesn't truly understand. Direct family members living with someone on dialysis probably have the most understanding but at the end od the day, even they are not in the skin of someone who is on dialysis. Would be great if we could swap bodies with a healthy person for a while just to give them a taste of the reality of what we have to deal with, but hey, I'm not sure that I would want to give that body back at the end of the day. :urcrazy;
-
You know,,,, just glad to see ya !!! :waving;
-
Oh, Tommy, I am SO relieved you are okay. We've all been really worried about you. I've been checking in every five minutes to see if you've posted. This just made my day.
Nothing gets your head together like a nice long road trip. I'm so glad you gave yourself some space to think.
I know what you mean about family. I don't have anyone but Andy, myself. Seems like a lot of us here are in the same boat that way; you'll definitely get understanding on that point.
I also know what you mean about sleep. Just a few months of insomnia can make you crazy. Have you tried melatonin? It worked for me, at least most of the time.
-
Welcome back!
Ah, MGH. Say no more. That is the hospital that dangled a transplant in front of me and then told me to eff off. (Not really, but it felt that way.) Then the same thing happened to me AGAIN at another center a year later, and I had the exact same reaction as you - I was ready to be done and refuse all treatment. I did not share that with IHD, but did talk to my husband who wanted to go down to the second hospital and confront the surgeon. I told him he couldn't do that since one of us needed to stay alive and out of prison for our kids. Anyhow, like you are discovering, if you can get through the initial crisis, things do have a way of sorting out.
I know nothing about switching dialysis clinics but that seems to require a nephrologist's referral. Actually, our member Paul apparently did walk into a clinic and say he wanted dialysis and the clinic said no one had ever done that before and they all had a laugh about it for years. Sounds like it worked fine for him.
As for switching hospitals, did you read cuteangrylittlemuppet's story on this thread? It sounds like she might be able to help you find a hospital with some humanity as she lives in your area. It will depend on your insurance, but for the most part, with transplant centers you do just call them up and say you want to be evaluated for a transplant. If there is something they require from you, like records, get those together and send them on. I would not worry about what your records say. Although, I requested all of my records to come to me, then withheld anything I did not think the transplant hospital needed to know. It really depends on your records how obvious it would be to them that you are keeping something from them.
Good luck and thanks for updating. It's great to hear you are in a better place.
-
Great to see you back! When I switched centers that is exactly what I did. I just walked into the center and asked if I could switch to that unit. It just so happen that my neph also serviced that center. If he did not they said I would of had to change my neph.
-
Beachbum glad you okay. If I read you post correctly you basically worked out your problem youself.
This thread kind of reminds me of the Woody Allen movie Annie Hall. Woody Allen (Arny) and Annie is standing in line for a movie and the guy behind his is going on on about the director (I forget his name). He's taking about the director's work and what he meant by this movie and that movie. Finally Woody Allen gets sick of it and tells the guy he doesn't know what he's talking about. The guy goes on about what an expert on this director and he even teaches a class about his work. The guy says if the director were here he set the director straight. So Woody says I happen to have right here. The actual director comes over had tells the guy "You don't know nothing of my work. And how you got to teach a class in anything I'll never know.
Bill
-
:cuddle;
Thank you, thank you for posting! I, too, have been worried about you.
Despite my current optimistic nature, there was a very dark time in my life that I now know was related to the meds I was taking. Each day was a struggle to keep thoughts of suicide at bay. This lasted for nearly two years and I often wonder how I survived that period. Now that I know how susceptible I am to medications, I watch carefully for any mental changes when I start something new. I can say almost certainly that I would not be here today if it weren't for a loving and understanding husband.
Tommy, I hope that you can work through this....where there is life there is still hope for things to get better.
:cuddle;
Aleta
-
Hey beachbum, loving that you came back to us!
*huggles*
(And for what it's worth, I don't think you're a wimp.)
-
Jesus! You don't know how happy we are to see you again! I can relate to the insomnia, I go through bouts too. The last one was about a week before the last state hearing we did here in Colorado. My mind was racing and I would either not sleep at night or wake up in middle night thinking about things - so when you mentioned loopy, yeah that describes it.
What broke the dam for me was remembering a post from years ago and the words: "My Angel got her wings". It was from the parent of dead child. I would like to say it was primal scream therapy after that, but no, I cried like a baby. - but boy did I sleep the next night.
-
This thread has really got to me, I cried whilst reading a lot of the comments. Like everyone here I am relieved and happy to see you are back with us Tommy. Take one day at a time and don't forget you DO have friends on IHD.
Denise
-
Beachbum, first and foremost, like everyone else here, I'm glad you are OK. It was very thoughtful of you to return to IHD to let us know how you are faring.
I'd like to say a couple of things about insomnia. Several years ago for some reason that I have yet to ascertain, I endured a week of insomnia, and it was hell. I remember sitting on the side of the bed in the middle of the night, sobbing, with my husband standing next to me, unable to do anything more than pat my head. I don't know what caused it nor what ended it, but I'll never forget it.
Decades ago, my husband had a cousin who was a physician. He was diagnosed with a malignant, inoperable brain tumor. Being a doctor, he knew exactly what was in store for him, and he had a breakdown. He gave his partner permission to commit him to a mental facility, and the very first thing they did was to re-establish a normal sleep pattern. I assume they did this with drugs, I don't know. But my point is that insomnia and/or an irregular sleeping pattern really can drive you crazy. In my very humble opinion, this is an issue you need to immediately address with your doctor, if you haven't already. When you are exhausted, life is very, very dark.
Since you predict that you may well have another such dark period, I hope that next time, you will again come to IHD and let us give you what imperfect support we can offer. I regret that YOU regret posting here in the first place, but I hope you will step back and recognize that there were a LOT of people who jumped to assist you, even if it was just to read what you had to say. Apart from a few members who have remarked that they are trained in this sort of thing, we, like you, are just muddling along, trying to cope with a horrible disease. We are here to at least TRY to support each other, and I hope that you see this. If we do not always have the perfect words or if our magic wands are not working that day, I hope you will forgive us. We do care, otherwise we would not bother trying to tackle such a difficult and personal dilemma.
A lot of IHD members seem to have really crappy families, and I've noticed that this puts these members at a distinct disadvantage. My own husband's family are snivelling cowards, and he doesn't have ESRD, yet I can see the damage done to him all these years later. I'm so sorry that your family has been so awful, but perhaps we can be a sort of cyberfamily for you from time to time, as you need us.
-
I know nothing about switching dialysis clinics but that seems to require a nephrologist's referral. Actually, our member Paul apparently did walk into a clinic and say he wanted dialysis and the clinic said no one had ever done that before and they all had a laugh about it for years. Sounds like it worked fine for him.
Referral, schmeferral. I didn't ask anyone's permission to switch clinics. I just phoned up the clinic I wanted to train in, waited till they had an opening and then told my then-current clinic not to expect me on Tuesday. Easy peasy.
-
You have no idea how glad we are to hear from you! Thank God and Bless you for posting that you are still amoung us! So very glad to see your post, Tommy!
God Bless,
lmunchkin
-
Hi, I am so glad you are back. I feel like I have been holding my breath this whole time.
I have to take a Tylenol PM each D night. I have to take an anti depressant to combat the down times. It is ok. It is a normal thing I think for a lot of us. I have an extremely small family and not a lot of support. I do work full time and that seems to be where I get most of it.
I am so happy to hear that you are trying. Please don't give up. You may not think you are worth anything to your family, but here you are worth A LOT!
Tracy :grouphug;
-
Beachbum;
The post you are puzzled about was written for someone who was posting on this thread. Were I to write those thoughts directly to you, the words would be vastly different. Don’t let it bother you.
Everyone here had the same goal, to save a human being – that being you. We are most certainly pleased that you came back and began communicating. The relief everyone has demonstrated shows how much this group shared your emotional burden (catharsis).
When faced with your original comments, there existed but one means of communication for us readers; talk to you here. We were limited and were impotent. Somewhere in the morass of words, I suggested several avenues of action that meant you needed to be in the company of another. Live life, get out and see what others are doing to live life. Your bullshit detector probably wouldn’t have accepted anything but obvious honest solutions.
That is step two, assuming you were serious in doing yourself in. Without step two, we were dead in the water. You left us to find your own solution and that is, actually, the best course of action for you. This time.
I am perfectly aware that I am not emotional in such situations and I expected and got criticism for that. I will say this: when the bad is happening, I am the person you want to be with. Typically, my emotional reaction comes up days later. That is why I didn’t mind being shot at during my term in the military, and that is why those several shooters are dead. My Therapist, yes I have one, says this is a survival mechanism learned from a nasty childhood. That is merely an explanation.
I wish you well, and you can stop scaring the crap out of us at any time.
gerald
-
BeachBum
i am relieved you came back. and i doubt there is anyone here who can NOT relate to all of what you said at one time or another.
i am the care partner and i have those times myself. the crappy family mostly on his side) is as MooseMom told me once, excise them, don't need toxic peeps in our lives, not with what we cope with. surround yourself with those who truly care.
as for clinics, i just called them up and said we want to switch. dh was too ill at that time to do anything but go along and i am glad we did because what we got with the 3rd clinic docs was way better and saved his life.
in the 2+ years i have been told by some that i can be a bi7ch..
well, if i weren't able to do so when needed, dh would probably be gone by now. and in his case, i would not lay him there and wallow. get yer butt up was my motto.
today he feels good doing home hemo. his labs are perfect and he is on a transplant list.
did i fight for him? yep. did i do things for him he could probably do for himself? yep.
today he is doing more and more on his own. but at one point when he was wallowing in the "why me" thing,
i said to him, "why not you?"..and.."we are all here having to deal with this and if i can't lay there and wallow then you can't either".
peeps never having gone through this have no clue. but there is plenty of us who DO.. :cuddle; :cuddle;
-
So you had a good 2 days break from every thing and it sounds like you got your head together, thank goodness for that, you had us all very worried. Beachbum there are going to be times when you get pis** off and depressed. If you can change things, like your clinic , do it. Please keep talking to us, see a canceller, at least now you know you need help. Be good to your self.
-
Please make an appt with your good PCP. He can give you advice on the sleep problem and maybe give you antidepressants. Almost all of us are on them. Then if the other clinic needs a referral he can help you. I'm glad you're ok. Dialysis can mess with you.
-
I agree with others about switching units. Just phone them up and find out if they are in network and also,if your nephrologist has admitting rights there. The latter should not be an issue if your nephrolgist is agreeable to getting admitting rights/privilages there. Mine wasn't and he did. All I had to do was sign some paperwork and it was all transferred for me. With respect to a transplant unit, You can get on a list anywhere in the country, it does not have to be local, although of course it is logistically and cost wise more complicated. The sooner you can get on a list, the sooner you can start accruing time.
-
Referral, schmeferral. I didn't ask anyone's permission to switch clinics. I just phoned up the clinic I wanted to train in, waited till they had an opening and then told my then-current clinic not to expect me on Tuesday. Easy peasy.
That's what I like to hear. (We are so alike it's quite spooky at times.)
You can get on a list anywhere in the country, it does not have to be local, although of course it is logistically and cost wise more complicated.
This is actually not true for everyone. If you only have Medicare/Medicaid or if you are in an HMO, you will probably struggle and may not be able to list outside of your state or outside of your immediate area. When i switched from PPO to HMO - same insurance, same employer, just a different plan - I suddenly needed to get a referral before they would pay for my eval, never mind that they had already paid for one eval and I was only trying to do a time transfer. I had to pay $20 to my GP to 'refer' me to a place that I had already referred myself. They also were not going to let me multiple-list or go out-of-area. They did approve it, but only on a technicality that is not worth getting into.
If your insurance won't cover it or you cannot prove to the transplant hospital that you have the means to get yourself to them on short notice and then stay for several months post-transplant, then they will not list you there. Many insurances will cover any transplant hospital in the country, but not all of them do.
-
Glad to have you back BeachBum! You had all of us in a tizzy there for a couple of days. God Bless you and keep you safe, Bill
-
I'm glad you're okay. relieved. Thank you for letting us know. :flower;
-
Thank you for letting us know you're getting better! I, too, am on an antidepressant and a non-narcotic sleeping pill. I had never suffered from either until D. Please keep us updated on how you are doing. We may not always have the right words BUT we do care about each other. And that does include YOU! :cuddle; :grouphug;
-
Beachbum. You SHIT! I'm so glad you came back to report in. So glad you took some time to figure stuff out.
:-* Here is a kiss. We all tried to help you in our own way. Some with kind words and some with tough love.
You are always welcome to come here and vent that is what this site is for.
:cheer:
-
I too am glad ur ok!
Insomnia can cause some serious emotional problems! I hope u can figure that out, i know when i go without sleep I get deeper emotional.
And, one thing said that makes me want to comment, something about not having half the issues, or whatever. One thing ive learned, one persons pain may be someone elses pleasure. What I mean by that, what bothers u may not be that big of a deal to someone else, but its huge to you. No one can understand fully the extent of your pain, because they arent you. When someone asks me if my guages in my ears hurt, i say, they probably would for a normal person, but i dont feel pain like most.... you see what im saying?
-
Referral, schmeferral. I didn't ask anyone's permission to switch clinics. I just phoned up the clinic I wanted to train in, waited till they had an opening and then told my then-current clinic not to expect me on Tuesday. Easy peasy.
That's what I like to hear. (We are so alike it's quite spooky at times.)
Heh. Gets you where you need to be in adulthood but doesn't make for a very smooth childhood. If our mothers only knew there were TWO of us in this world, I bet they'd be grateful they each only had ONE of us!
-
beachbum,
So very very very glad to hear from you. You generated an outpouring of love that I hope you can feel now. I'm still pretty new to this site and I'm thinking this is an incredible bunch of people. So glad to have found all of them and you too, because I can tell from the passion of your anger that you've got a lot to give.
I don't want to do the "who's had it the worst thing" - but I've noticed that a lot of people have spoken about their families, and that is a big source of pain for you too, and i just want you to know that I understand. There are lots of people in this world who have had brutal childhoods - some physically,, others emotionally, some both. i think the only thing I can offer is understanding.
I agree with those who talk about insomnia causing thinking problems. I was sick for a long time before i started D, and I was hardly sleeping (although exhausted) and I was insane. I wasn't thinking about killing myself - i thought i could just walk into an alternate plane of existence, and I used to think that was happening as I walked across the parking lot into work each day. I thought people would see that i was becoming transparent. I was in the ER a few days later. You definitely need to find a way to get some sleep! Even if it requires help from a doc. Some doc out there somewhere will be the good one for you. I pray you cross paths soon. I wish a bright future for you. Stay here with us!
-
Well that was certainly scary.....Beachbum, I'm so glad to hear you are still in this NOT A GAME life. We may have gotten the sticky end of things but the support and caring that has been spread around during this week makes me think maybe THAT is what life is all about. I have a 40 year old son with AIDS and Liver Cancer....I have to talk him away from the edge every day....it's when he tells me "Mom, even with the pain I know there is more good then bad in this world" that I feel like giving in to my tears. We need to be there for each other, give each other a hug or a laugh each day, and show others that we are there for them just as we hope they are there for us. If there are answers to all our problems and for all situations I did NOT get the memo. We do that best we can, and what works for one may not work for others....but I sure do believe in LOVE!!!! Beachbum, you must know that you are truly cared for!!!!
-
:flower; Good to "see" you again!!
-
Someone posted a link in this thread that scared the daylights out of me. There was another man that may have ended his life by stopping D. Not only did that scare me but in that thread someone else posted about what they experienced after they stopped D for 2 months. I read on the internet that dying from kidney failure was peaceful but what this guy wrote really scared me. He talked of having to sleep sitting up because he gained 40lbs of extra fluid. How his feet started to bleed and fluid leaked out of his legs. He ended up in the ER. It didn't sound peaceful at all.
Oh sh*! That was me. That was Noahvale's post. It's a hard read isn't it. I really really hope I didn't upset you, at the time I just wanted to answer your question. Oops.
I've been checking in ever since, hoping you were chilling out somewhere. And you were! Hooray!!!!!!!!!!!!!
:guitar:
Go you good thing, Mr Bum.
-
A few of you have given me advice about the sleep problem. I'm at my wits end with my doctors. They won't take it seriously. I can't get anxiety meds through my drs but I did get some through the ER and 30 pills lasted me over 6 months. Clearly I don't have issues with addiction. I only take them on the really bad nights. Lately I've had to resort to borrowing them from friends. I really don't understand how drugs addicts can get pills from drs like they are giving out candy but patients that are legit get the shaft.
Lately my internal clock is all messed up. I get tired during the day but at night my brain won't shut off and I'm wired all night. I stay away from caffeine. I try not to eat late. I do all the right things. Also, my wife has noticed that I stop breathing in my sleep throughout the night when I do sleep. This concerns me because I had an aunt that died in her sleep and they believe it was related to sleep apnea. Even I get scared because I wake up often gasping for air. It happened to me the other night, I jumped out of bed and my heart was racing. it took me a few minutes to catch my breath. My father and my uncle both have severe sleep apnea and are on the machine. I asked my dr to refer me to a sleep specialist and he just blew me off telling me that it's not dangerous. This is why I want out of MGH. The sleep apnea could be contributing to my high blood pressure. I know it's not good for the heart or any other organs.
I can't do a normal exchange at night. Anthing over 1000cc and I feel like I can't breath when I lay down so I stay at 1000 and 2000 the rest of the day.
I'm trying different things to change my clock. I finally slept throughout the night last night and got a good 6 hours of sleep. This is good for me! But again this morning I got real tired and took a nap and slept for another 2 hours. It doesn't help I'm not working right now. For now I will continue to push forward and try to sleep at night. My pattern lately has been little or no sleep for 3 days and then 1 or 2 days where I sleep and then back to the same broken record.
-
By what I've understood, sleep apnea + renal disease = higher risk of heart problems. I can't believe your doc would blow it off like this. In my very humble opinion, a referral to a sleep clinic might be the very best thing you could do for yourself. I really am shocked that any physician would ignore a patient's sleep problems.
Yes, your internal clock does need to be rest, but I don't know how to do that. I could use some advice in that regard myself. I've had a rotten cold for a week, and in that time, I have hardly slept at all. I think I might be hallucinating here....I see lots of little icons leaping about as I type this! OOOOOh, there's one playing a guitar! Ooooooh!
-
With your family history of sleep apnea, you really do need a sleep specialist to sort things out, Tommy. What doctor wouldn't realize that? I know you've said you like your PCP, but you need one who will give you a referral to the doctor who can help you. As always, wishing you all the best...
-
First off, you need a new PCP. Do you have to get a referral through him or are you in A position to circumvent him and get a self referral to a sleep specialist. Ypu most definately need a sleep study and your doctor should take it seriously. My cardiologist insisted on me having a sleep study because of the risks that sleep apnoea places on the heart and also the stroke risk. Even without your family history, kidney patients are more at risk of sleep apnoea. This could really be contributing to your insomnia, and your depression.
-
I just got on the board here and see your here and broke into tears.. You cant emagine the feeling of reliefe and joy in seeing this. I havent read anyone elses responces yet to your comming back, as i cant read through these tears. God bless you, keep you safe, and give you peace.., and i will read the rest of the posts real soon,,, Gotta clean up my eyes... Thank you for being brave and comming back to tell.
-
I too just came out of a dark hole although I didn't stop treatment, I just ate whatever the hell I want and didn't care, I hate feeling like crap as this did to me so I got some help and now back on the right track. This dark hole also put me on bp meds which I have never had to take for my 2 years of being on dialysis. I regret screwing with my diet, but what's done is done and I can't change it.
Beach bum, I'm glad you didn't end everything, I discovered it's really not worth it.
-
beachbum, have you made any progress on finding a new doc?
-
beachbum I'm a bit late to this party but I am SO glad you are OK and getting back on the treatment bandwagon - with all the ups and downs.
I feel like, or rather I wish I could, edit the subject lineo to make it say "I'm **NOT** Ending Treatment" because I was so pleased to read your post.
It's funny though when I started reading the post about your "clear the head" trip to Maine, and when I got to the part about worrying what you were eating and gaining fluid, I thought to myself "Well this is clearly a guy who does NOT want to pack it all in!" and I was just so glad!
I know it's not easy and it's a tough road, but I am very happy you are through this dark stage for now.
best wishes!