I just need to vent... is Dialysis really worth it ?

[Desert Dancer]

The pain is just under the rib cage , from the centre to the right side. 

nanadar, I had pain similar to this for almost a year, day in and day out. I could not even sit down to eat because of it. We called it my 'mystery pain'. Turned out it was bone pain from my PTH level being too high (clastomas, or 'brown tumors' on my ribs) and within two days of my doctor doubling my Sensipar dosage it disappeared. It might be worth looking into.

Jonndad, not all of us are at death's door. Dialysis may suck but you can still have some semblance of a normal life. Honestly, I don't post here very much unless I am having issues but that doesn't mean that's all of my life on dialysis. (It isn't.) It's just that this is the place for doing that. It's an outlet. Why would someone like nanadar want to post her troubles here if everyone were all 'suzy sunshine' and pollyanna-ish about what life on dialysis is really like? Perhaps she'd refrain because she'd fear not being understood here, or being attacked for being 'too negative'. You can get that on the DaVita boards. If you stick around long enough you will see the positives. Maybe not the positives of dialysis but certainly the positives of this forum and the people who make it what it is. I've never found myself surrounded by more positivity and hope than here.

[stringbandbeth]

A Healing Prayer

Oh Great Goddess
Mother of Mercy and Healing

Send the energy of Hygeia
to nourish from Her Sacred Bowl

Send the energy of Brigid
to heal with waters of Her Sacred Well

Send the energy of Demeter
to restore life to withering cells

Send the energy of Quan Yin
to bless the healing with peace

Send Your healing wisdom to the body
to restore its sacred balance
Thank You Great Goddess
Mother of All Life

~ Abby Willowroot © 1999


Blessed Be !

[Grumpy-1]

Nanadar

There have been a lot of interesting posts here.  I think I can say that everyone on dialysis has at one time thought "what the heck" and wanted to quit.  I'm one, it comes and goes.  Some mornings I just don't want to go on.  I too am not afraid of dying.  I've lived a good life, have wonderful daughter's and a wonderful wife.  Those alone are worth living for.  BUT there are the times where I want to quit - I'm just plain tired of this life (or life style)   Why I haven't quit dialysis I don't know.  It seems that everytime I decide that I will quit tomorrow - tomorrow is better and I continue on.

Nanadar - play this game with me please.  "what if"

what if you find the problems with the pain - and you began to feel better.
what if you are feeling better and there is one more child that needs your love, care, and guidance (and you are not here to give it)
What if you quit without trying all the alternatives
What if there is someone in the world that needs what you can give and you are not there.

You don't know what tomorrow will bring - it maybe good, maybe bad, but unless you live to get there you will never know. 

Finally, if you decide to quit dialysis and let nature take it's course, none of here will think less of you.  Your family will grieve, but life will go on.

Grumpy

[lmunchkin]

Very well said Grumpy and excellent reasons too!

God Bless,
lmunchkin

[justjen321]

I'll preface this with the fact that my husband is the patient, I am the caregiver. We did PD for a year, and have switched to home hemo in March of this year.

@Nanadar - Your story made me sad for you. It's my belief, and opinion, that no one can tell you that you have to go on. What I -do- hope is that you are able to 'tough it out' long enough to see what your life CAN be like once you move past the beginning phases, which are hard, and suck. I was glad to read further down the thread that your family is being more supportive, because I think that's a huge help in healing and dealing. You've found the right place for the venting and spewing that we all need to do from time to time.

You mentioned fear of judgement. Just for today, don't fear judgement. Anyone else's judgement is made without living in your skin, walking in your shoes, etc etc, and therefore, is pretty invalid. Carry on, grab your bootstraps, and you WILL have a moment when you know what the right path is for YOU. I highly encourage you to explore hemo (home) dialysis. We found, for US, it was the better modality.


@Jonndad - I'm so saddened by your post. Others have stated it here, but the reality is, we are all far more likely to come here to vent, share fears, concerns, etc, than we are to say 'Holy crap! Home hemo is kick ass, we've got it under control, and we've taken our lives back!!'. Because... when you take your life back, you don't spend as much time here. We went though the icky times, the scary times, the times when my husband felt like he just couldn't go on like this. Fortunately, we've come to a place where we've altered our lives to fit dialysis, we've educated ourselves enough to know how to handle issues and problems, and honestly, aside from the time factor, it's not the huge mountain we felt like it once was.

Just know that people reach out more when they are hurting, scared, needy, angry... etc. That's a big part of why you see this here. They need that space, and that comfort of other people who can say 'Been there. Done that. It DOES get better.'

It's a lot like my husbands moods while he was doing in center dialysis. He struggled because he felt like he was seeing his future every day in the sickest people. At home, things are much more happy and laid back.

[Jonndad]

I wanted to apologize to the entire group here for hijacking this thread to an extent and butting in.  I was in an emotional state at the time and certainly regret saying what I said.  I apologize to the OP.  I also am sorry I said what I did as this is a group for people to vent about dialysis and people need to do that.  Thank you for your support and kind words. 

[amanda100wilson]

Jonndad,  I am sure that no-one was upset by what you posted.  I can fully understand where you were coming from as I have felt that way myself.  I hope that you can come to realise that life is worth living despite ESRD and dialysis.  Come here and vent! It does help.

[jbeany]

Jonn, I didn't think you hijacked the thread.  You responded to it honestly and were posting about the same feelings that Nanadar had.  Our founder started this site because his posts on "support group" sites run by the major dialysis companies were deleted whenever he raised any negative points.  Nanadar's post might have been deleted on a corporate site.  Here, we do post the scary stories - because we can, and because people should know that it's not all hearts and flowers.  I find it reassuring to know that other people have struggled with the same demons I've faced down. 

There's nothing scarier than thinking you are alone.

[flanbyjan]

love your choice of graphics.  that pretty much says it all.

[lmunchkin]

Jonn, I didn't think you hijacked the thread.  You responded to it honestly and were posting about the same feelings that Nanadar had.  Our founder started this site because his posts on "support group" sites run by the major dialysis companies were deleted whenever he raised any negative points.  Nanadar's post might have been deleted on a corporate site.  Here, we do post the scary stories - because we can, and because people should know that it's not all hearts and flowers.  I find it reassuring to know that other people have struggled with the same demons I've faced down. 

There's nothing scarier than thinking you are alone.

Ditto.......

[Gerald Lively]

Nandar:

I am the court jester here.  That doesn’t mean I don’t understand your pain.  I have been there, done that.  I represent the statistic that is one-one hundredth of one percent – those who survive renal failure without a transplant.

I came here a ruined person.  My kidneys failed at the exact same time Lymphoma was discovered and I am 74 years old – not much chance of making it out alive.  My life crashed around me, no one wanted to be around lest they catch whatever kooties I had.  I live 35 miles from the RAI (Frenius) poke you in the chest dialysis center – yep, just as gas prices were going up.  So, I parked my 20 gallons to the mile pickup truck and sold my Harley which was new, paid for and had only 3,000 miles on it.   

Life was over. 

It was a year ago that I was wheeled into the hospital, hallucinating with a creatinine count of 17 and the opinion of a Nephrologist that I’d never recover. Well, Nandar, most of the time that might have been a different story. After a week I woke up to see this scruffy Dude reading a Good Housekeeping magazine while a rusty looking refrigerator was hooked up to my chest. 

I did two things that might help you, it helped me: I took charge of my own healthcare, I developed a new circle of friends.

I wanted to know everything about dialysis. I read the internet, I read messages here, I questioned the people at RAI.  I discovered they were taking out far too much water and the argument ensued.  But it worked.  I felt better and my numbers began to improve until one day I told the Doc I wanted out.  We retested and I escaped. 

Also, everytime I showed up for dialysis I made the rounds of all twenty dialysis positions and talk to each patients, asking how they were and could I raise some hell on their behalf.  This brought me into contact with the administrators who really didn’t have much choice.  Yep, I threatened to go to DaVita but at the last minutes they changed their mind. I will be seeing all of those patients next week when I go back for another $67 visit with the Doc.

I am here to lighten you load, to refocus your outlook on the absurd and the obvious change of the subject.  You can find be being a butt here and there and on the political discussion page.

I posted a book for you to read.  I will do whatever it takes.

[gothiclovemonkey]

IF it makes you feel any better, ive been doing this for over 5 years now, and there are still days i wonder the same thing....
Part of me does feel that this is a good thing, its keeping my alive for my child, and for myself to learn things... but then the other half says wow this is a miserable way to "live" especially if you believe in Quality over Quantity... and if you believe that death is not the end, but a new beginning, id pressume it would be alot harder to bare this burden.
Taking one day at a time helps.
Perhaps PD isnt the type of D you should be doing. I tried it, twice, and both times it ended badly. So im back on hemo.
I hope things turn out as well as possible for you.
Stay strong as you can and remember we are only human
 

[rfranzi]

I feel compelled to respond to your post. And believe me, NO judgement. I have been on dialysis for 8 weeks. Right around where you are, I had to tell my son that I might need to opt out if things did not improve. I never thought I would say that to him, but I was there. It was the option to opt out and trying to hang in there for my son that kept me going this long. I had surgery for both the fistula and a catheter at once. It happened fast for me, so I needed the emergency access. I had the labored breathing, and many other awful symptoms. Very scary and yes, it is natural to feel like not wanting to live this way. I was so sick, this is the first time I've spoken of it on here. And I am vocal. It was just too bad to even articulate, I literally felt the strength and energy to live leaving my body. I can only speak for myself, but I made secret milestones for myself in order not to quit.

One was waking up from surgery (which I secretly hoped I wouldn't). I asked for valium and slept as much as I could to get "through it" the frirst month especially. I also took pain killers if I needed them. I made a deal with myself at that time to at least give it until the chest catheter came out before I decided to quit. Quitting is so final. 8-14 days or so, and its over. Whereas, you never know how different things could be in a month. Luckily, I didn't have anyone holding me to a timeframe (did that mean they don't love me enough? - See? Can't win).. I still have the catheter in my chest. I have gone from being unable to feed myself, never mind cook or clean to driving myself to dialysis, cooking, and I recently ran some errrands and washed some dishes. I went from sleeping all day to waking up by 9 or 10 am and staying up, even if I am still largely sedentary. I feel like I have literally been brought back from the brink of life and I suppose I have. In fact, I have been wrapping my head around the idea that this machine is actually keeping me alive, love it or hate it.

I do know and have learned it is important to tell the techs how you are feeling, because there is much they can do right there to help with much of it. For instance, I was losing weight and had to have them lower my dry weight. It helped with the nausea. They were giving me IV iron, as dialysis often causes anemia. They were supposed to meter it oiut, pushing in a fourth of the dose each hour. The techs got lazy and pushed it all in at the end. It kept me up all night. After this happened twice, I was able to identify why. I asked them to put it in the beginning. Since then, I have been able to sleep.

As I am starting to wake up, I am learning about dialysis itself and how to work with the techs to improve my experience. I have crashed and nearly passed out a couple of times. I was very nauseas, even in the chair, in the beginning. I have much to learn, but given that, and in spite of myself and some incompetent techs, I have gone from suicidal to hopeful. and from feeling as though I were dying to feeling a little reborn.

I am still the reluctant patient, part of me wishing I had just died of complications during fistula surgery, so I wouldn't have to drag my son through a long, terminal, rare disease (or, to be honest, that I wouldn't end up this way). My lifestyle was very spontaneous and free. It was the core of who I was. This is a devastating change for me.

But, after having faced the abyss, I feel there may be a purpose in my existence. And further, I owe it to myself to learn about dialysis and to work with the staff to get it right, even if it means complaining. I still have the catheter in ny chest/neck, so the deal I made with myself aboiut hanging in there is still on. I have just switched to needles this past week and just did two for the fist time yesterday. I hope to have this catheter out in 3-4 weeks.

I keep focusing on how great that will feel, but even further, I have decided to be trained for home hemo, to release those in-center chains and take control of my schedule. If I can make it this far, I can stick myself. I don't want to do PD, for several reasons, including the ability to swim and take bubble baths. So, having an image of 3 months from now being a lot different. I have decided that, even if I am never restored to 100% of my 25 year old self, if I have 60 or 70%, I wiill try to put it to good use.

So, all I have to share is my personal experience and hope. Yoiu never know, you can turn a corner and wake up one day and realize, hey, I didn't reach for my nausea medication this morning! Or, I didn't throw up this morning! Or, I have some energy today! I feel human again!

Feelings are powerful, and I have noticed that the worse I am feeling physically, my emotions tend to follow. Just remember, feelings are fleeting and change with each passing day, while quitting is a final decision. Personally, had I not improved, (and believe me I am not my old self yet if I ever will be), I am not certain I would be able to stick it out no matter how much I loved my loved ones. Everyone has a limit to how much pain and suffering they can tolerate. But, if you're at all like me, you are driving down a road and there is a corner up ahead, with some relief once the corner is turned. Hang in there, my friend. I wish you much relief and recovery. You are definitely not alone.

[Wildrose]

I asked this same question a few months back and got 'yelled at' in forum (ok perhaps not yelled at but the responses weren't all very nice, lol). Glad you are getting a lot nicer responses.    I understand your feelings completely and wish you the best.  Dialysis is tough and I'm having a hard go of it at the moment so I can't say much to encourage other than ... life is precious and yes dialysis makes it sooo much harder than it is normally, don't make any hasty decisions please. I hope the best for you and will be praying that your pain and discomfort lessons. No judgement here, no matter what you choose in the future. *hugs* 

[rfranzi]

I hear you.  I came to this board hoping to be uplifted and find the strength to go on dialysis.  Instead I just want to die now.  I'm not blaming anyone but myself for not controlling my diabetes.  The more I read here the more I know I just can't put myself through this.  It's time to die I guess.

I was feeling somewhat like yourself not too long ago. I felt like I knew what it meant to stare into the abyss. I didn't see an end in sight, and when you think about it all at once, it can be quite overwhelming. I was in a dank windowless apartment to boot and had lost my job due to this disease and was feeling quite grim indeed. I looked for another apartment, but without my former job, well, rents were not affordable anymore, not for anything decent. I was deeply depressed and while I was seeing a counselor, I could not take SSRIs (anti-depressants) as I have bad side effects with them. I was about to go on or had just started dialysis, was sick as a dog, and felt quite alone. And just when it seemed the darkest, I made a simple phone call to my landlord and long story short, I got a great two bedroom apartment on the top floor with a view of downtown Bellevue and Mt. Ranier (on a clear day) - with open windows and a balcony. In other words, a much more healing environment with sun and air. Further, my landlord decided to keep my rent the same. She said she wanted to help me out, she knew I was going through a rough time. It restored my faith in people, and I felt like someone or something wanted me to stick around. Maybe, I thought, I could even help others.

After three months of dialysis I started to feel better. Amazingly so. I am battling some new issues and have had some minor setbacks, and I am just hoping that it smooths out, but the thing that strikes me most is, 1. I almost gave up right before something got better, and 2. We have this one life, and choosing to end it is so final, whereas a rough patch may feel like forever, but is in fact temporary and there is generally always hope, even if it sometimes comes from the strangest places. So, hang in there, it takes a while but you can feel better. I wish you all the best and keep writing! How you feel is very normal for this situation. But feelings are one thing, and actions are hopefully well thought out and not simply based on a fleeting feeling, however powerful or real. Take good care.

[slipkid]

When I was diagnosed with renal failure, it cut me at the knees.

My five brothers and sisters turned their back on me when I got sick ten years ago, and this hurts deeply, very deeply, made ever so more painful with the loss of my mother 6 weeks ago.  I have been "kicked out of port" but they will not win.

Find an outlet for your wishes or your frustrations.  Don't give up.  Don't sacrifice your life to those who are only interested in the fees they get because of your pain.

Maybe you can find something different from your life's work to give you a new outlook on life.

[chiawana]

Nanadar, I'm my husband's care partner and while he has never said he will quit dialysis, he did ask me to kill him about a month ago when he was in the hospital. He had pneumonia and a heart attack, and was on a respirator. The day he came out of the sedation he wrote a me note that said "kill me." And he started to cry. That was probably the worst day of my life. If I had been given any reason to think that he would not or could not recover, I might have let them remove the respirator. But I also knew he was loaded up on fentanyl and midazolam, and he wasn't himself.  My husband is a Pagan sage, and I have no doubt that he has no fear of dying. With his lifelong health problems, I know that when it comes he will welcome it. He says he wants to rest in the arms of the Mother. But there are reasons he wants to stay, too.  He has no children, but feels compelled to pass along his vast knowledge to someone. Interestingly, after he was out of the hospital a longtime friend asked him to mentor her in her pagan studies. And he also says that I'm the biggest reason he is still here. We do hemodialysis at home and he says he will never go back to in-center. So we HAVE to make this work, and it's getting better each day. We've been doing it at home now for about 2 months; he started dialysis in February of this year.  He still feels restricted and bound by having to be hooked up to a machine but he is able to work two days a week and do things the rest of the time that he wants to do. I tell him it could always be worse but he thinks i'm minimizing what he has to deal with. And the truth is, there is no way I can know how awful it is for him.  I can only be here and love him and help him to the best of my ability.

[malaka]

I started in center dialysis 3 x per week in the middle of January, 2012.  So its been seven months, and I'm training to switch to home hemo.   That's the extent of my experience.  So, for what its worth....

There's lots of places I'd rather be that hooked up to dialysis.  I don't like the ups and downs physically and mentally, either.  If there were an alternative, I'd jump on it today.  Instead all I have is the years-away hope of transplant which isn't a cure all, either.

However, dialysis is less bad than I'd thought it would be.  Its not painful.  So all things considered, I'm exceedingly happy that its available and effective.  No "woe is me" attitude is ever going to make it better. 

[lmunchkin]

Well is "Dialysis Really worth it?".  I certainly think so!  I dialysis my husband at home, and it has kept him with me for 8 yrs now.  He will give it up one day, less the Lord bring him home earlier, but for now, he aint going NOWHERE!  We are doing this and still enjoying our lives.  I do my darndest to see that D is not in our way, period.  We go places when we feel like it and do things when we feel like it.  God has Blessed us and we dont want to throw those Blessings away.

So yes, Dialysis is Worth it!  It gives me longer time with the one I Love!

God Bless,
lmunchkin

[Leanne]

Well said jbeany...  my two cents are...look at how much you have already had to go through so maybe give it a little more time and see if it gets a bit better.  Dont feel bad forhow you feel.  We all have ups and downs because this is scarey and life changing.  Give life a chance.  I always tell myself this...this may not be the life i planned but it is the one i got and im going to try to live it.

[Whamo]

Dialysis is worth it?  Yes, the good times make it worth it.  But there are times when it seems like it isn't.  That's for sure.

[billybags]

Whamo , I completely agree. My husband has had a brillient 2 weeks of feeling quite good after feeling naff for so long. We have to cherish moments like these.

[billyM]

yes it is . i may need a few hours flat on my back afterwards , and i may give nurses dogs abuse when they hurt me with needles .

then my son appears with tea and toast and a smile , and it makes it all worthwhile .

life is what we make of it , and all we need to do is find the motivation to go on .

[Whamo]

   I had a fantastic day at Disneyland yesterday with my wife.  The crowds are the lightest of the year there this week.  I plan to go early Thursday morning as well because the park closes early for a Cast member function, and I figure people will stay away that day because of it.  I had my chest catheter taken out yesterday before I went.  Today I took the bandage off after asking my wife, a nurse, if it was okay.  It bled, so I put on another bandage.  Those catheters become part of your body if you leave them in too long.