I'm Ending Treatment

[Gerald Lively]

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

[kristina]

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.

[Riverwhispering]

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.


 

[jbeany]

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.

[Riverwhispering]

Jbeany thank you for the post.  guess i wasn't thinking it thru.   I just don't want him to die

[boswife]

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.

[Gerald Lively]

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

[Chris]

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


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!


Where there is a will, there is a way to cope

[boswife]

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      

[bansix]

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?

[fearless]

beachbum, I'm really looking forward to hearing something from you.

[amanda100wilson]

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.

[Riverwhispering]

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.

[YLGuy]

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.

[del]

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!!

[CebuShan]

Okarol, didn't you pm him? Did he ever reply?

[amanda100wilson]

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.

[gothiclovemonkey]

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....

[kristina]

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.

[lmunchkin]

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
 

[cuteangrylittlemuppet]

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.

[MooseMom]

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.

[glitter]

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.

[gothiclovemonkey]

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. 

[Riverwhispering]

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.