Re: End of Life Discussions

[lmunchkin]

My wife is letting me respond to this particular situation, as I too have decided to stop dialysis in the near future. I have a couple of things I need to do and family members I need to see before going to be with my Lord & Savior. I understand totally that it means I will die when I stop. The dying I can handle its the loved ones that make it sooo hard to leave.
My children from a previous marraige are not for this at all.  One says he is totally not going to accept it, the other says its sucide and another who doesnt want me to go. I got the response I exspected.
My second wife of 17 years is with me through thick & thin. They are making this hard on her because she is in the middle of it all.  The thing is Iam ready. Im tired of life connnected to a machine, but thankful for it nonetheless. Iam not eligible for a transplant because of so many other health issues. I cant drive. I have to depend on wife to get me where I need to go.  I have a below knee amputation & amputation of foot on other leg. I just want others who are reading this to understand that this is not living for me. Before I was diagnosed with this our life was great. We did everything together. We had motorcycles and traveled everywhere we wanted. We love each other unconditionally. She has been there with me through all of this, how can I continue to put my spouse through this.  I love her and I do not want her to tie her down to my disease.
Does she want me to go, ABSOLUTELY NOT, and has been the one to keep me going when I get down & out. But when is enough, enough? I have been doing this for 7 years now, and I am tired of being sick & tired.  Iam secure in the fact of where iam going when I die. My wife, though she is not happy about this, wants to honor my wishes. She deserves better than this and I can not continue to put my selfishness before her. I know there are people who may disagree with this and that is fine! What happened to people with this disease before "dialysis" ever existed? They died. So did they commit suicide, no they didnt. I thank God that Dialysis has afforded me my time with my wife and my family. It has been wonderful, sincerely, but I want to know something, why are people fighting to live here on earth, when knowing they can be in Heaven with Jesus? Do we not know that we are actually dead when living then we die and are alive!  My daughter told my wife that I was giving up hope & commiting suicide. Upseting my wife bringing her to tears.
I love my children alot, but it is not right of them to make or blame her for anything! She has been here for me and dialysing me at home since 2004. Iam a quite man and I try to hold my tongue alot, but they only come around when it is convenient for them. They call when it is convenient for them.  I dont ask much from them as not to bother them in any way. I love them, but to put this on my wife when she has bent over backwards to maintain my sickness as best she can, I dont take likely.
Sorry bout my rambling! I just want to say to the woman who wanted to stop or has actually stopped, I understand completely and will see you soon in Glory.  You have a good man to take care of you through out and he will miss you terribly! Sir, Im sorry for your loss it has to be hard for you but you were right to honor her wishes. Dont let anyone tell you otherwise


Edited: Moved posts, changed subject line - okarol/admin

[MooseMom]

This is a thread started on behalf of our member, lmunchkin, and her husband who is the one on dialysis.

This isn't really meant to be a discussion about death.  It is meant to be a discussion of what goes into making the choice between staying on dialysis and stopping treatment.  This is to be a safe place to discuss not only how these choices affect us but also how they affect the people we love and love us in return.  The intent is not to judge or be judged.

[boswife]

Wondering if the post from lmunchkin could be moved here to start it off?? 

and...... wow...  what a hard topic but beautiful and necessary...   It's eve right now here and im not good with emotions at night.  I pray for all who are dealing with it now wheather they wish to or not    

[lmunchkin]

Well said MM, but how do I get his thoughts & desires on this page?  I knew I should have paid more attention in school!  lol

[willowtreewren]

PKD is a legacy in my husband's family. When my father-in-law was diagnosed many years ago after suffering a heart attack, we watched him go from a vibrant, robust man to a shadow. He began with PD and attacked it like a new adventure that would have minimal impact on his life. But PD didn't work and he ended doing in-center hemo. My MIL, a very social creature, would sit in the waiting room and make friends.

But this larger than life man continued to shrink, but physically and mentally. In the end we sat with him while he hallucinated from the toxins building in his body.

I share this background because during this time my husband and his sister were tested and sadly, they were both diagnosed with PKD. But how differently they reacted. My husband immediately changed his diet to lower protein and low sodium. He regularly monitored his BP and started seeing a nephrologist annually. We knew from that point that it was only a matter of time before dialysis would be part of our lives.

His sister, on the other hand, said flatly that she would never go on dialysis and would, "go out in the field and die alone." She continued to eat a high sodium diet and commonly ignored her nephrologist. She did not monitor her blood pressure. Her kidneys became so enlarged with cysts that they were both the size of footballs. And she went into kidney failure. By this time she had married husband #4. And this man is a gem...worth living for and with.

Even so, she continued to bend the protocols - cutting treatments short (she didn't like being on the machine more than 2 hours), skipping treatments (she would not hook up the phone line to her NxStage machine for fear of getting caught), refusing to take her Sensipar (it upset her stomach). It bacame harder for her to walk as the calcium was leached from her bones. She insisted that she would be the first person to be able to cure kidney failure through Eastern exercise.

Fast forward....

She is in a serious car accident that caused her enlarged kidneys to bleed, necessitating their removal. Her nephrologist recommends a parathyroidechtomy but she is convinced that she will be getting a transplant any day (although she is not even listed), so she refuses to have the surgery.

This is a woman in her fifties who needs a scooter to get around because her bones are so fragile, who STILL insists on cutting treatments short and skipping as many as possible. then her heart becomes enlarged and the fluid build up causes extreme shortness of breath. She finally realizes that she needs daily treatments. And with her husband's help she starts this new regimen.

Seven weeks ago she fell off her chair and broke both hips and several other bones, one day before the scheduled (finally) parathyroidechtomy. She told family that she would not pursue further treatment. Her oldest child rushed to her side….

I don’t know what transpired within her family, but she changed her mind, had both hips replaced and is now in rehab (with in-room dialysis). She is still hoping for a transplant (and has been listed for about 18 months).

I tell this story, because I think it is incredibly difficult to know what we will do in any situation. As long as there is hope, I believe there is a strong internal urge to live. Hope is the fuel that powers it.

Without hope, life becomes untenable.

That point, where hope for the future becomes too weak to sustain life, will be different for each of us, I believe. It is personal. Quality of life and impact on others factors into the equation.

I remember when my mother told me that she would not pursue additional treatment for her lung cancer. At that time I begged her to reconsider. But I realized that it was MY desire not to lose her that prompted me. Then I was able to let go and help her live those last weeks peacefully.

It was not easy for me, but it was best for her.

To anyone contemplating the end of life, for whatever reason, my heart goes out to you. But I understand.

 

Aleta

 

[MooseMom]

My wife is letting me respond to this particular situation, as I too have decided to stop dialysis in the near future. I have a couple of things I need to do and family members I need to see before going to be with my Lord & Savior. I understand totally that it means I will die when I stop. The dying I can handle its the loved ones that make it sooo hard to leave.
My children from a previous marraige are not for this at all.  One says he is totally not going to accept it, the other says its sucide and another who doesnt want me to go. I got the response I exspected.
My second wife of 17 years is with me through thick & thin. They are making this hard on her because she is in the middle of it all.  The thing is Iam ready. Im tired of life connnected to a machine, but thankful for it nonetheless. Iam not eligible for a transplant because of so many other health issues. I cant drive. I have to depend on wife to get me where I need to go.  I have a below knee amputation & amputation of foot on other leg. I just want others who are reading this to understand that this is not living for me. Before I was diagnosed with this our life was great. We did everything together. We had motorcycles and traveled everywhere we wanted. We love each other unconditionally. She has been there with me through all of this, how can I continue to put my spouse through this.  I love her and I do not want her to tie her down to my disease.
Does she want me to go, ABSOLUTELY NOT, and has been the one to keep me going when I get down & out. But when is enough, enough? I have been doing this for 7 years now, and I am tired of being sick & tired.  Iam secure in the fact of where iam going when I die. My wife, though she is not happy about this, wants to honor my wishes. She deserves better than this and I can not continue to put my selfishness before her. I know there are people who may disagree with this and that is fine! What happened to people with this disease before "dialysis" ever existed? They died. So did they commit suicide, no they didnt. I thank God that Dialysis has afforded me my time with my wife and my family. It has been wonderful, sincerely, but I want to know something, why are people fighting to live here on earth, when knowing they can be in Heaven with Jesus? Do we not know that we are actually dead when living then we die and are alive!  My daughter told my wife that I was giving up hope & commiting suicide. Upseting my wife bringing her to tears.
I love my children alot, but it is not right of them to make or blame her for anything! She has been here for me and dialysing me at home since 2004. Iam a quite man and I try to hold my tongue alot, but they only come around when it is convenient for them. They call when it is convenient for them.  I dont ask much from them as not to bother them in any way. I love them, but to put this on my wife when she has bent over backwards to maintain my sickness as best she can, I dont take likely.
Sorry bout my rambling! I just want to say to the woman who wanted to stop or has actually stopped, I understand completely and will see you soon in Glory.  You have a good man to take care of you through out and he will miss you terribly! Sir, Im sorry for your loss it has to be hard for you but you were right to honor her wishes. Dont let anyone tell you otherwise

The above is a post from lmunchkin's husband copied from another discussion.  Lmunchkin, I hope you don't mind me taking the liberty in copying it over on your behalf.

This discussion is for caregivers, too.  It's not limited to only those who are affected by ESRD or any other chronic disease.  We recognize that our loved ones are deeply touched by our disease and by how we choose to treat it.
 
 

[tyefly]

To difficult for me... to think about end of life....  and I have a hard time understanding why we would even think about the choice of staying on dialysis or stopping dialysis.....   I am thinking that if dialysis is not working then maybe a person needs more dialysis.... maybe its because I dont feel sick anymore....  I think we think different when we are sick...   I have such a will to live...   To think positive....  to find a way .....

Sorry  I just hate the dying thing.....  I am in such denial..... I dont like death and I cant understand why anyone would choose death....  but then I dont feel sick anymore.... so I dont think that way.......

[MooseMom]

tyefly, you've hit the nail on the head.  You don't feel sick anymore, so you don't think about dying.  That's about as good an endorsement of "optimal dialysis" that we're going to get!

lmunchkin's hubby, I know you love your children, but in my world, the fact that they have given your lovely wife such a hard time while abdicating their own duties means that they don't have a say in this.  This is really between you and lmunchkin.

Saying that, though, if you are thinking about quitting dialysis just so as to unburden your wife, well, I'm not sure that's gonna fly.  How would lmunchkin live with herself if she knew that you quit living because you didn't want to be a "burden" to her?  I don't think she minds driving you around.  That's a small price to pay to keep you alive and happy.  If you stopped dialysis solely because you want to "free" your wife, sure, that might ease the practical burdens, but it might create an emotional burden that would be far more destructive.  I don't think I could ever look at myself in the mirror if I thought my spouse stopped live-saving treatment just so that I could be "untied" from his disease.

If your physical suffering is so intense that your quality of life is down to zero, then stopping dialysis and concentrating on pallitive or hospice care is certainly something to think about.

Just my very humble thoughts that are really irrelevant in the grand scheme of things!

PS...this is a very emotional and very personal discussion we are having with people we don't know well.  We all care about each other, but in truth, we don't know each other on that personal level.  So if anything is said here accidently causes offense, please be assured that's NOT the intention.  It's hard to have this sort of conversation on a computer with people you've never met.

[willowtreewren]

PS...this is a very emotional and very personal discussion we are having with people we don't know well.  We all care about each other, but in truth, we don't know each other on that personal level.  So if anything is said here accidently causes offense, please be assured that's NOT the intention.  It's hard to have this sort of conversation on a computer with people you've never met.

So true, Moosemom, so true.

[lmunchkin]

Thank you so much MM for coping his posts. He will appreciate it as well as I.  He is sleeping right now and I will tell him what you did in the am.  I appreciate you so much, and must say Ihave read alot of your posts. You got Spunk & Grit little lady, and those are very Admirable traits. Your thoughts are Honest and to the point.  I don't take any thing (I dont think I do) said on this site personally.  If I do, then thats my problem.  I Love you MM and hope to get to know you better as you are very accommadating not just to us, but alot of others on this site. Well I really must get my "Beauty" sleep. See yall tomorrow.
 

[gothiclovemonkey]

I cant say that I would continue dialysis, if I didnt have my son. Hes the only reason I endure it. My quality of life isnt that great, but I am still young, and my son needs me. I dont feel like anyone could handle him but me. I was blessed with an amazing son, but he does require alot of attention and a ton of patience. TON. (i often hear, how do u do it? how can u be so calm with him!?) Uh because I love him, and hes a good kid, just a little... excited lol
Life is hard, nothing worth it is ever easy, but I can completely understand not wanting to continue this way.

I also agree that, before dialysis, people just died, so i dont think its suicide either. Some people disagree... Ever person has their own opinion. My family has told me they too think its suicidal, but I like to bring up the fact its really no more suicidal than that cigarette they are puffing away on (other things, like alcohol... drugs... processed food... ohhh ya...) lol im kind of a smart ass

[okarol]

Ok I split the post started by lmunckin and somehow renamed the thread the same as the other - ugh - this is what I get for trying to merge when I am tired.
I am going to try to fix it, please forgive me if it's not what you had intended MM.

okarol/admin

[Hazmat35]

I have only been on D for a year now, and my health has deteriorated bad.  I was once STRONG AS A BULL, now, not so much. 

I too think think that I would give up hope, if it wasn't for my G/F.  We have been together for 11 years, and she has been by my side every day.  I think the same things, that I am such a burden on her, and I really am.  It is awful how she "takes care of me", and I mean that in a good way.  I don't want for anything. 

She knows more about me and my illness than I do!!!!  But I hate to see her so tired and exhausted from taking care of me, but she gets so ANGRY  when I talk about cashing in my chips! 

Please, give it some more thought!  I would love to go to heaven and be with my mom, my dad, my sisters, my brother, aunts, uncles, and grand parents.  But, God created man, who created Dialysis, so in sense, God has given us Dialysis so we can sustain life and continue on and not just die because of this horrible disease. 

[tyefly]

I have only been on D for a year now, and my health has deteriorated bad.  I was once STRONG AS A BULL, now, not so much. 

I think this is what this disease presents all of us... we use to be this and that  and now   we hang on the strings...   
   I just want to know from the peope who have had a transplant..... does it get better  ...do we get healthier..do we go back to what we were after the transplant..... 

[MooseMom]

I agree.  This is such a struggle, and when we start looking at our past selves, it makes things so much harder and so much sadder.  It makes me feel like I've been robbed of my future.  And it instills fear in me.  It makes me think, "Well, if this horrible thing has happened to me, what's to say that something worse isn't going to happen tomorrow or next year?"

I don't dare hope for a transplant.  I just don't ever let my mind go there.  I am not wired to live in hope.  Miracles are what happen to other people.  Does anyone ever notice who does and who does not reply to the "I'm getting a transplant!" threads on the transplant forum?  It's like, "Oh, that's wonderful for you!!!", but then this little creepy voice whispers to you, "Don't let yourself imagine that one day that might be you!" 

The will to keep on living waxes and wanes.  But this life is all we have.  I don't know if I'm going to see my mom and dad in heaven because that seems awfully far away.  I feel their absence every day, but I cannot claim that since their deaths, I still feel their presence.  I cannot lie.

[noahvale]

**

[lmunchkin]

Well, hubby started this, but is unwilling to post cause his eyes are blurred. This is another part of this disease that has taken his sight, not fully, but will eventually.  Diabetes & high B/P robbed him of his kidneys, thus ESRD. As a man suffering this disease I believe it may be harder for them, now that doesnt mean it is any less for a woman. Biblicly speaking, (I do Believe in very much so) he looks at it from a man who is head of his household. He is to love his wife as Christ loves the Church. To provide, protect and honor her and the children.  Yes even to die for it as Christ did for all of us! 
MM, I cant speak for him, but as much as it pains me to let him go, I do know he will be free from all of his suffering. I have watched him suffer in hospital for 11 weeks with them tring to save his toes. They would hopefully amputate a few at a time. The kids & I both telling him give it a try dad, you will never know if you have them amputated. Then 2weeks in and they couldnt save his toes. Then he would get these infections in the bones that they couldnt release him because of it. He couldnt even go to the clinic if he could, cause they were not equipt to handle, VRE. Dont ask me what that is, all I know it was a horrible infection in his bones in the foot area.
This was 8/2008 to 12/23/2008, yea, what a Christmas. The only way they released him then was I had agreed to PD on him at home until he was over this infection. Whenever I was around him at home or even in hospital (Was there the whole 11 wks, never left his side except to go home and shower) I had to dress in a gown, mask & gloves. Everything had to be washed and cleaned. I do mean everything he touched! But I was just so glad to have him home for Christmas, what an awesome gift!
We got rid of the VRE in Feb 2009, his other toes that were "saved" got gangrene and just was so awful and humilated him. He didnt want his family members to see it, it was an awful thing for him. So he went to wound care center to try and treat them and, once again, possibly save them! Kuddos to that wound care center, they gave it there best. Great bunch of nurses and Drs there. He went several sessions in a Hyperbarack Chamber. They did pretty good, but not enough.
They put him back in hospital  6/2009 for amputation of his left leg, but his kids (They are adults by the way, they were adults when we got married) they didnt want it to happen and I was beginning to realize that this may be best if he had it amputated, but his vascular surgeon (He is an excellent surgeon) gave us another obtion, a vein bypass. So we tried that and Hey it really worked out fine. No problems to date, & they did take the rest of his toes on his left. He has half a foot I quess you could say.
Then one morning He woke me up to come look at his PD fluid, and sure enough, he got his second bout of peritonitis. So admitted him in hospital 9/2009 to remove cath in belly and insert a temp cath in shoulder. Yeap, after almost 5 years of PD, he was introduced to Hemo.
Then when he was released he went in-center, and things really seemed to be getting better or at least for me they were. Im not going to put these centers down, because they have alot to deal with themselves, but I had to rely on my husband to tell me who, when & why & what, and he would be sooooo wiped out.  It was awful for him, but he continued to go.
Then all of a sudden, on top of all his other issues with Diabetic Retinopathy of his eyes (That is a whole other issue in itself), his right foot, which had a couple toes remaining, got gangerine and I mean aggressively spreading. Took him to Dr. and they immediately put him back in and gave him the bad news. On 2/12/10 they amputated his right leg, thank God, below his knee.
I really believe in my heart of hearts, that did it for him! Not that that was the first time he considered ending dialysis, but actually voiced his desire to.  But he had it done and went to an excellent rehab facility. I did not want a nursing home facility cause they would barely work him more that 2 hours. I told his Dr. & he agreed and knew of an excellent facility. He went there 2 days after the surgery and they had him up early in the am to 8pm. They were AWESOME! After 2 weeks he was out and had learn to do alot for himself.  He told me that my decision to do that for him gave him some independence that he missed for so long. Hey, he is my man, and I know what he needs.  SOME SELF DIGNITY!!!!!
Any rate, (here Iam with another novel) he went home and we had to make everything wheell chair accessible. Took him to Center to dialysis and even though he was feeling a little independent, he just lost hope of ever doing things he used to do, although, I tried to take him places other than appointments, but I believe, he wants to be Whole again.
His in center just became a burden to him, and he had made many comments to me about how he wished he could do PD again at home. It wasnt necessarily PD he wanted, it was being at home was all he wanted. He really didnt care what kind of dialysis he was doing, as long as he was in our home. The comforts of home has a big impact on people. Its the place where we can feel and express and do what ever we want. Just a pure sense of FREEDOM!
Then his Neph. approached me one day about my husband.  She has always been so concerned for her patients and wants to please them and get the right therapy for them! She is not only a great doctor, but a loving caring person! We text each other all the time,SERIOUSLY!!!   Well she approached me about doing hemo at home, cause he wants to be home ever since he stopped PD. I was shocked! I didnt know that option existed.  WELL DAH! I told her, well Sign me Up!  Anything for my hubby.  If that is what he wants then that is what I will do! 
In 6/2010 learned Nxstage and never looked back.  Iam very comfortable doing it all! Not saying it has always been easy to learn, but I know the signs and all to look for, and have gotten very comfortable in my decision making. But my husband can not see anything getting better in his health.  His eyesight and his memory at times is failing him. I truly believe he wants to end things now before he losses something else. He depends on me solely, which I have no problem with. That is in our Vows. If I didnt want to honor our vows, than I would not have married this Wonderful man.  He is so quite yet so strong in his gentleness. Me, Iam more annimated & vocal than him. Its what he fell in love with me for and I fell in love with him over! But we both have strong believes in a Loving God, who will see us through all things.
Even though I dont want to loss him because of the love, but I sincerely, do not want to put him through any more suffering. This is a very hard decision for him and me too, but I will honor his final decision when it comes. I pray continously for the Lords guidance in our situation. He is Just & Righteous and He is with not just us, but all of us. Whether you believe in the Lord or not, that doesnt change the fact that He is there with us at all times!
Sorry, guys, through my tears , I have managed another book!

lmunchkin

[willowtreewren]

He is so quite yet so strong in his gentleness.

This brought tears to my eyes....

 

I don't dare hope for a transplant.  I just don't ever let my mind go there.  I am not wired to live in hope.  Miracles are what happen to other people.  Does anyone ever notice who does and who does not reply to the "I'm getting a transplant!" threads on the transplant forum?  It's like, "Oh, that's wonderful for you!!!", but then this little creepy voice whispers to you, "Don't let yourself imagine that one day that might be you!"

MM, when I first joined IHD I was trying to find answers for how to raise my GFR so I would be eligible to give my husband a kidney as I was a perfect match for him. Bill Peckham answered me (thank you Bill). But I found that there was so much information here that I stayed.

And while poking around in the forums I read one of those posts about someone getting the call and oh, I felt so bitter....

And the next time, I felt bitter, but less so....

But then, I realized that it really happened and, in fact, was happening with regularity. I turned a corner, and went from simply giving obligatory congratulations to feeling an immense sense of encouragement. And true joy for every single person who got "their" kidney.

Even those who were unlikely...our dear Paris, and Petey's Marvin. I mean deep, deep satisfaction because the miracle not only could happen, but it DID happen, right before my eyes.

We were in for the long haul. I did not count treatments or spend time wishing for a transplant. We made plans for fitting dialysis into our lives forever. When we looked at travel trailers for retirement, the most important criteria was where to put the machine.

But, Moosemom, our "plans" were disrupted by the call that came to us. We did not live in hope, but we worked hard at making dialysis work.

This kidney could fail at any time. I have to recognize that. But then, we could get run over by a semi on our way to work in the morning, too. In fact, we are going to die. I think that there is a great deal of dignity in being able to choose where, when and how in the event that life no longer offers any reason to continue.

Lmunchkin, I so understand about your hubby. My husband and I both feel that it would be far harder on either of us to lose the ability to care for ourselves, but still have the faculty to realize it. (The other way around is harder on those around you).

It may be hard to have discussions about the end of life, but it certainly makes it less scary.

Hugs.

Aleta

[lmunchkin]

It is so very hard indeed W, so very hard. It brings to mind when my brother was killed by a car when crossing the street in 83', it was so unexpected and we were all devasted and shocked. I never really understood the grief my parents had. It was a different kind of loss for them, they out lived a child of theirs. Yea me and my other siblings lost a brother, but they lost a child.  Does that make sense! No parent wants to out live a child. But sadly it does happen and we will never understand why. Quess its like I dont understand why bad things happen to good people! And yes sometimes I question God on these m
atters, but ultimately I do know that things happen for a reason, and maybe in time I will understand.
I also want people to understand, like others, my husband and I have been through alot together. A lot of Good and alot of Not So Good, but we somehow perservere and take on the next challenge. But I know he is tired and hurts so very badly inside, cause he remembers when he could do many, many things as a man, but now feels so helpless as a man! Im not a man but I totally understand that.  He knows he can count on me, there is no question in that, but in his mind, he remembers that not just I, but others counted on him and it is just not so anymore. It is a tough situation, but this too shall pass!  I just want to enjoy every moment with him whether he is sick or not. I want him to leave this world knowing that he is so very much loved and cherished by this woman.
I read some of these posts and I hear all this sad lonely people stories, and it literally breaks my heart!!!! I dont care if you are the biggest Ass in the world no one deserves to be treated as though they dont exist. I just dont understand that and quite frankly would not tolerate the presense of that kind of person around me or my family. Imperfection I understand, but down rite disrespectful towards others is totally unexceptable especially those with diseases! Lord, tone my tongue, please!!!!

[MooseMom]

Oh, lmunchkin, how much love you show your husband by trying to imagine what life must be like for him!  I don't know what decision he will end up making, but whatever he chooses to do, I know that he will have your loving support.  You have done so much for him, and should he ask God to gather him up into His arms, I know that God will do so and will look back down on Earth and see you, a true angel.

Thank you so much for taking the time to tell us more about you and your husband.  Anything that any of us can learn from each other goes such a long way to helping us understand different ways in which to try to cope with this horrible disease.

Aleta, I just want to make sure I've made myself very clear because a misunderstanding here could hurt a lot of people.  Looking at the transplant stories, I gradually noticed a pattern.  I noticed that the people who posted congratulatory messages were people who'd received a transplant or people who were caregivers.  They were rarely people who had been on D for years and were still waiting.  I began to wonder why, and I began to wonder why I gradually came to avoid those threads.  I was appalled by the suspicion that maybe I was merely jealous or mean.  But no, that wasn't it because I felt true joy for our members' great good fortune.  I thought about how they might have suffered on D and waited all those years for that new kidney, and I felt elated that there was a very good chance that the worst part of the nightmare might be finally over for them.  So no, it was never bitterness.  It was...fear.  Fear that I may not be so lucky.  Fear to hope and have to face disappointment.  Fear that time might run out for me.  And those are completely separate feelings of joy for someone else's new hope.  There is nothing unique about me, so I suspect that that others may feel the same joy juxtaposed with the same fear.

I hope all of this made some sense.  Lmunchkin's story has me rather shaken, and I am feeling rather fragile about everything at the moment.  I think about KICKSTART feeling that because she has no family she can trust, someone else would be better off with a new kidney.  I find this all quite soul-destroying, and I can't see the keyboard anymore.  I'm sorry.

[Jean]

lmunchkin, after reading all of these posts, both yours and others, my heart hurts. I am so very grateful that you have a strong faith in God, as do I. Whatever decision your hubby makes, will be the right one for you and for him. I am grateful to be able to read posts like this , as we are all in the same boat. No one should have to suffer the way he has been doing and I am amazed at his stamina. He must be a very strong man on the inside. God Bless both of you and you will be in my prayers tonight.

[lmunchkin]

Thank you, Jean, for your kind words! I mean that sincerely.
MM, I love you sooo much. You have no idea how much reading your posts (Ive been reading way before I came a member) have ministered not just to me but many others here! You speak from the HEART, whats not to Love about that, huh?  You, little lady, have been going through so many things (ALONE) with out help from others. You have a "Thick Skin" approach to life and I want a little of that, please!!!!!!!  You are the ANGEL here!
Let me explain to all, that I too was very much on my own! People did not like being around me for very good reasons that I will not post. I Deserved It. At that time, I didn,t want anyone around me!  How about them Apples! I was MEAN, HATEFUL, & FULL OF BITTERNESS & WAS A BITCH (there I said it. Forgive me Lord) to be around. I have no one to blame but myself.
Then when I hit rock bottom and found no way out of my miserable life, Jesus sent a little Angel, took me to church where I got on my hands and knees and asked him to take it all away, and HE did.  Ive never looked back (except to give example) and am soo thankful. Then 2 years later he sent a Wonderful loving man in my life and here we are!
I say that to make this point!  We all have felt alone at some point and time in our lives. Whether we choose to be that way or unfortunately, do not want to be alone, but are, it is totally up to us in how we handle it.
MM, you have loved ones, but because of circumstances, they are not able to help you, so you do it yourself. "THICK  SKIN"
KS, whom Idont know very well, has a different way of dealing with her loneliness. She is more revealing about hers! And I ache when I sense her loneliness and it reminds me of when I felt it too. Mine was by choice but hers may not be. Anyway, for whatever reason or not, it is all in how we react to situations in our lives that can make or break things along the way!
Does that make sense, or am I in NOVEL mode again!

[Mymothersdaughter]

I could really use your support and advice. My mom has been on and off dialysis for the past 30years. She had 3 kidney transplants during the first 10 years, with the last transplant lasting about 10years. She has been back on dialysis for the past 8-9 years. At first she was on PD at home and was able to maintain some quality of life. My husband and I and our 2 kids, now 8 and 5, moved 5 hours away almost 6 years ago. The first two years after we moved were fine, my mom even came to help when my son was born for 3-4 weeks and my parents would come visit in the summers. But 4 years ago, she got a serious infection and spent 5 weeks in hospital fighting for her life. By a miracle of God, she finally recovered. She had to go on Hemo though. It took about a year for her to regain her strength when she mildly fractured her pelvis. Two years ago, she started showing signs of short term memory loss. About the same time she had to have a stint put in for an artery blockage. Then in September, she fell and broke her hip, and required surgery. She seems to have recovered, and walks with a limp. Her dementia has progressed slightly, she sometimes forgets her pills, repeats lots of things, but is still mentally with it. She is still my mom, albeit a bit forgetful, repeating conversations, but she is still there mentally. She still lives at home with my dad, and spends lots of time on her own.

I was down to visit with my kids for a week over Spring Break, while my dad went on a field trip with the high school volleyball team he coaches to Hawaii (and a much needed break). At the end of my stay, my mom told me that she wants to stop dialysis. When I talked further with her, it sounded like she was talking about planning for when the dementia progresses. But last night she called me, and told me again that she wants to stop dialysis, and this time is seems to be sooner vs later.

Here is my concern, and where the dementia confuses things a bit. When I first arrived, my mom was up in arms about her family doctor putting the pressure on her to end dialysis. My dad, who was at that visit, maintains that the doctor was talking about the "if" situations ie. if she has a stroke. However, my mom kept saying that my dad doesn't hear things (and he is somewhat deaf). Of course, she has memory loss, and doesn't always remember things accurately. Although she is still fairly with it, one of the ways it has affected her is that she can become a bit obsessive about certain things. When she brought up ending dialysis the first time, she also talked about the nurses at dialysis putting "pressure" on her to end dialysis. I think it is quite possible that my mom is reading into conversations. She is saying that her reason for ending dialysis is that other people need it and there aren't enough spots. (we live in Canada).

I could understand her wanting to end dialysis with everything she has gone through healthwise over the past five years. As believers in Jesus, I can understand being done with this struggle and wanting to move on to the freedom in heaver. But to end dialysis because she feels that other people think she should is really upsetting me. What do I do?

[okarol]

If it were me I would get her permission to phone her doctor (you may have to have her mail or fax permission in a note, everyone seems so privacy-minded these days.) At least you'll know what his recommendation is for her, and the timing. As far as her taking a spot away from some other needy dialysis patient - I don't think this happens - at least not that I know of in the US and Canada - if you need it, it will be provided.
Your mom has been through a lot, and maybe to her the future does not look too rosey. She also may be a little depressed. My mom is having early dementia (after 4 years of treatment for lymphoma) and was very upset about her forgetfulness. They have started her on a low dose of Paxil and she seems so much better. These are things you could discuss with her doctor.
Sending you hugs! 

[lmunchkin]

I agree with Okarol, see what you may fing out from her doctors! With her permission to release info, they might can shed light on her situation. It may be something like Paxil or some other medicines that might can help her. Bless your heart, I know it takes courage on your part. 
But I must say 30 years is alot of fighting! What an amazing mother you have. I admire her tenacity! SO AMAZING!
Unfortunately, due to Dementia, she may see something coming her way that maybe Doc's, nurses, family and other loved ones may not see go on in her ALERT state of mind. Just saying!  What would you do if you were in her shoes? Think about that for a moment!
We might say, "Oh I would never put this burden on my loved ones" or would we say " Im going to fight till my last breath". It is easy to say what we would do, but in reality, we are not in their shoes! I don't have all the answers but I dont want to stand in someones way if they choose to end their PAIN.
Your mother has been through a whole lot that we may never fully understand what her life & pain has been, but MYMD, this Iam certain, "OUR FOOTSTEPS ARE CALLED BY GOD".
Let me let you in on a little secret. In 2004, when husband was diagnosed ESRD he did not ask for Dialysis then. It was told to him, yes, but he did not ask for it.  Quess who asked?
I sometimes wonder if for my own selfish reasons, cause I love him so much & maybe, just maybe God would have taken him then,  (Here I go with tears again) that at that time I didnt play like God and in my doing so, was just telling GOD, you cant take him now, I need him!  Some on this site especially those who are spouses and caregivers may not like this, but I really do believe that we play like little HOLY GODS, and think that we can heal these people with these chronically ill patients, especially those with vital organs.
Who are we to say who,when, how & what these people should or shouldnt do? Or tell them what is best for them when they are so twisted inside.  They don't need us who are healthy making live or die decisions for them. 
I know you love your mother very much.  It is evident by your post. Yes, please contact her Doctors and find out all you can, but if her desire is to stop, then her spouse should honor that wish. Im sure there is alot of her not wanting to put your Dad through anymore.  That has to be one of the reasons among others!  But should we, who are not in her shoes, not let her do what she wishes to do!!!  It's hard sweetie, so very hard!  I will be praying for you and her and all involved. Just remember to allow her to make her own decisions, SHE may have reasons that you may never understand.
Keep us posted & ask questions if you want.  You are going through alot & just take a moment and catch your breathe, it is not something that immediately has to happen! Right? Lifting you up NOW!!!!

lmunchkin