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

[nanadar]

First let me state that I realy don't expect anyone to responde to this and if you do please don't judge me. I really just need someplace to vent because I have no one to talk to. my friends and family say " don't talk that way, it's silly, you should feel blessed that you get the chance to live"
Blessed are you frikkin kidding me Before I started dialysis I had a life, I could go camping and travel and enjoy life to the fullest. I had a great job with people I loved to work with. Then my kidneys started to fail, my health went into the toilet. I was puking for 3-4 hours a day every day. I had to change my work to 1/2 days because I was too tired and too pukey to work a full 8 hours.  Everyone assured me that "Wait till you get on dialysis, things will get better" My first initial reaction was to refuse dialysis and just let life take it's natural course. I believe that there is "life after life" so I am not opposed to dieing, leaving my earthly body behind. I have already endured watching my mom and my uncle go through 15 years of dialysis so I knew what to expect. But for the "good of my family"  I agreed to be hooked up. And now I have to wonder if that was really the right decission for me?  I've only been hooked up for 5 weeks and in that time I have had an endless amount of trips to the Dr., er dept, and my pd nurse for "complications" I am in pain daily to the point that it is hard to breath, and I can hardly get out of bed so I take huge amounts of Narcotic pain killers ( peracets) which only puts poison in my body ( in my opnion ) and lulls me into a drug enduced sleep to escape the pain. I am but a prisioner in my own house because i can hardly manage the stairs without passing out let alone thinking of going outside and driving someplace. I have had to go on "short term disability" as the neuphrologist says I'll be off work for at least another 2 -3 months. I take so many pills that i have to write on the bottles what they are for because I can't remember them all. My family dosen't want to come and see me because they can't bear seeing me in pain and not being able to do anything about it. My pain episodes also include gasping for air which scares the hell out of my small grandchildren who are not old enough to understand what's going on with nana.  I cry a lot because of the pain and because I really don't see an end in site. No one seems to know why I'm in pain. I've had CT scans, altrasounds, x-rays and been poked and proded by almost evert Neuphrologist in this city. There is no end in sight.  So I have to ask myself... Is this really worth it? Why am I putting my husband ( and family ) through this pain of them watching me suffer and then them being helpless ?  I really think I should never have made that pact with my husband that I would do this for at least 2 years. I think I've just comdemed myself to 24 months of suffering ( I wonder if he will give me an early pardon..... even inmates get out after 10 months of good behaviour LOL )  Right now I just want to die. No this is not depression talking... I can't be depressed I'm taking 3 pills a day for that !  Ok I'm done venting ....  thanks for giving me a place to do this without fear, cause my family just cranks on me big time if i even mention what my true feelings are.

Blessed be
Nana dar

[del]

It sounds like PD is not working for you. It doesn't work for everybody.  What are your clearances???  Have your doctors suggested hemo? 

[Brightsky69]

I am sorry this has been really difficult for you. I wish there was something I could say to help you feel a bit better. Your not alone. 

[Jonndad]

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.

[Joe]

I had a real tough time getting started on PD. I started out being dehydrated which led to the puking and passing out. I didn't have the pain you seem to be experiencing, but it certainly wasn't a walk in the park. Now, after 11 months, I'm into the routine, my meds are balanced, mostly, and I'm feeling much better. What I'm saying is that it gets better as you go on, don't give up just yet. I know it sucks, but it should settle down.  Good luck.

[jbeany]

nana, we don't call this site "I Hate Dialysis" because we all think that being on D is a wonderful life with hearts and flowers every minute.  Very, very few of our regular members are going to have anything to judge you for - most of us have had the same thoughts at some time.

I made it through the worst by remembering that I DID have a choice, and I had chosen dialysis.  And believe me, the first couple of months are usually the worst for most patients.  Knowing that I could quit is what kept me going.  Your husband making you promise to stick to it for two years bothers me.  He's taken away that choice for you.  Being forced to endure pain when you don't want to is harder than knowing you are fighting through because you decided you wanted to. 

I'm glad you are already on anti-depressants.  That's always the first thing I suggest for people who want to quit.  It's good to make sure it's not the depression talking.  The next part is to find someone to talk to about this - you have by posting on here, but is there someone nearby you can discuss this with as well?  Is the social worker at your unit of any use?  (Some of them are just wasting space and air, but not all of them.)  A pastor, a mental health professional, even a GP who isn't tied into the idea of dialysis as much as some of the nephs are?

For that matter, are you telling the nephs you are seeing that if they can't come up with a solution to the pain, you want to stop treatment?  Incentive never hurt - demand some results from them!  Have you asked - or better yet, demanded- to see a pain management specialist?  If they can't stop it, they should be doing what they can to treat it.   Making you live with the pain should not be an option.

Honestly, dialysis is life support.  It's NOT suicide to refuse treatment for organ failure.  You are allowed to stop it, no matter how much your family hates the thought.  Them wanting things not to change doesn't stop it from happening, and their guilt at not being able to help shouldn't stop you from making the choice that is right for you.

I love life, and I'm glad I fought through the pain and survived, but that was MY choice.  There's no shame in making your own choice.   I'd like to hope that you chose to fight, but I won't judge anyone who doesn't. 

[jeannea]

I had lots of nausea on PD. Ask for Zofran ODT which you can take when needed. Next are you doing manuals or the cycler? Where is the pain? Air bubbles can give you pain in your shoulders. If the pain is worst during fills you may need to try a lower volume til you get used to it. None of this is easy and it takes a while to adjust to dialysis. Don't be hard on yourself about not being able to work. You're going through a lot right now.

I hope you can find a therapist or pastor or someone to talk to. It feels really good to have someone who listens to you. Then if you decide to quit, you will have worked through your thoughts and feelings.

[MooseMom]

I hear you brother.  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.

This really upsets me.  I would be horrified to know that your experience here on IHD makes you want to die!  We DO want to be uplifting, but we also don't want to dismiss the difficulties that ESRD will pose.  Knowledge is power, but knowledge can also lead to fear and loathing.  The truth in ESRD is that ignorance can be bliss, but it can also kill you.

Please don't make any decisions just yet.

[MooseMom]

Nanadar, jbeany pretty much said it all.

I am appalled that your family chooses to stay away because of their own discomfort.  That is cowardly, and I cannot forgive that.  I am very sorry.

People who dare to tell us how we "should" feel really piss me off.

No one here is going to judge you, but if they do, ignore them.  ESRD is a personally unique experience, and not everyone does well.  But you deserve to give yourself a chance.  Five weeks is still pretty early, but it does sound like it has been a horrific 5 weeks.  I hope you will find the strength to demand relief from your physical symptoms.  No one should suffer like this.

[Jonndad]

I hear you brother.  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.

This really upsets me.  I would be horrified to know that your experience here on IHD makes you want to die!  We DO want to be uplifting, but we also don't want to dismiss the difficulties that ESRD will pose.  Knowledge is power, but knowledge can also lead to fear and loathing.  The truth in ESRD is that ignorance can be bliss, but it can also kill you.

Please don't make any decisions just yet.

I'm so depressed.  It seems like it's just one horror story after another on this site.  I don't know where you find your inner strength.  I'm your basic coward when it comes to medical stuff and now I'm backed in a corner with no way out.  Why would all of you put yourselves through this torture 24 hours a day seven days a week?  I am not understanding this.  There is no quality of life it seems.  Only fear and pain. 






Edited:  Fixed quote tag error - jbeany, Moderator

[MooseMom]

Oh Jonndad, please believe me when I know exactly how you feel.  I'm sure you would just LOVE to go back and read all six thousand of my posts because if you did, you would see how fear enveloped me.  I have been at DEFCON 1 for 8 years since I learned how severe my CKD was.  My mother went through dialysis, so I saw for myself how awful it could be.  And there were so many times when just when I thought I could do this, I'd learn some other awful nugget of information that sent me into freefall.

I wish I could tell you how to overcome the fear, but I don't know you well so can't say what would work for you.  The idea of not being in control of what my body was doing to me drove me mad, so I learned everything I possibly could, strictly followed my diet, was extraordinarily compliant with my meds and appointments, and I did everything necessary to get on the transplant list as soon as my egfr hit the 20 mark.  I wrestled control out of the hands of Fate whenever I could.  I became very much my own best self-advocate.  I worked hard to stay off dialysis, but in the end, my kidneys were going to give out no matter what I did...I think I was just able to prolong the deterioration.

People find their strength from different sources.  Some are born with it while some are given it by loved ones.  But no one is "strong" all the time.  I have had many sobbing jags at 3AM, wondering if I would ever have a future at all, and if I did, would it be filled with nothing but suffering?  I personally do not think that suffering makes me a better, more enlightened person.  It just makes me angry and resentful.  Not a nice thing to say about myself, but it's the truth, and I won't apologize for it.

I'm very well versed in that feeling of being backed in a corner with no way out.  But the truth is that there ARE many people who do just fine on dialysis.  I know it is hard to believe, but it is true.  It's never easy, but I've personally met people who lead vital and interesting lives despite dialysis, and many of them post right here on IHD.  Meeting these people in Las Vegas last year forced me to see that while dialysis is daunting, it CAN still provide the opportunity to have a good life.

Sadly, there ARE a lot of very ill people on dialysis who will never recover and will always be a prisoner to their treatment.  Dialysis for these people can be torture and continuation of it should be questioned. 

Maybe someone should start a thread about what dialysis has given to them instead of what it has taken away.  We don't tend to post about all of the wonderful aspects of CKD/ESRD because we come here to discuss problems a lot of the time.

[jbeany]

Jonn, as MM says, you have to remember that people are more likely to come here to talk when they are having problems.  When it's all going well, they are often to busy to post about - and sometimes, just superstitious enough to think that mentioning that it is going well is a bad idea. 

I did, eventually, do pretty well on dialysis.  It was a hard fight, and it was never easy, but I do think it was worth the effort.  I learned as much as I could and took control of my health.  You do have to fight - the stress, the pain, the anger, and sometimes the medical staff.  Knowing as much as I could about what was happening helped me take control and demand the best treatment I could get.  It gave me a better quality of life.  It was never the same as when I was healthy, but it was good enough in the good times to make the bad times worth fighting for.

Once the worst of the side effects are worked out, it's not 24/7.  It's still a huge chunk of your life, but it depends on your own value system if you feel that the parts you have that aren't about dialysis are worth doing dialysis.

And there are plenty of non-horror stories on here, too.  Read about Bill Peckham traveling the world while on dialysis.  Read about Zach starting his own production company and directing movies that have appeared on PBS while on dialysis for what, 30 years now, give or take?  Read any of the posts about how to best visit Disney while on dialysis.  Read the tips for camping while on D.  Read about the advantages of NxStage and how much better people feel on it.  Read the list of those who got transplants and note how many are doing well with them. 

Heck, read my story. (I'll toot my own horn here a minute.)  I started dialysis with a husband who ran to his mistress as soon as the doctor told me I needed to go on dialysis.  I fought long and hard to convince my center to start using NxStage, and used it successfully.  I went from passing out every time I saw a needle coming out of my arm to sticking my own graft.  I survived a divorce and being so broke for several years that I often lived on less than $20 a month for food.  I nearly died with my transplant, had to relearn to walk, wasn't allowed to eat or drink anything for 4 months straight, and was still undergoing surgical repairs two years later.  In the middle of recovering, I dealt with my grandmother on hospice, cleared her hoarded estate, went back to school, graduated with a paralegal degree, and bought a house I'm now fixing up on my own.  Lots of what I went through sounds pretty horrific at times - and yes, it felt that way, too.  But I CHOSE to fight through and I've come out the other side in wonderful shape with hopes for a fabulous future.  I fought those battles one day at a time. I certainly didn't expect to find myself where I'm at now, but it was worth it.

Hey, I jumped out of a plane while I was on D.  It was amazing.  When else was I going to do that?  I wanted to remember that I wasn't just a patient - I was a human being with a need to live, and I planned to do it while I could.

I won't judge anyone who doesn't have the strength to fight, but don't think because we talk about the fighting parts on here so much that there aren't good times in there that are worth the fight. 

[ChrisEtc]

Heck, read my story. (I'll toot my own horn here a minute.)  I started dialysis with a husband who ran to his mistress as soon as the doctor told me I needed to go on dialysis.  I fought long and hard to convince my center to start using NxStage, and used it successfully.  I went from passing out every time I saw a needle coming out of my arm to sticking my own graft.  I survived a divorce and being so broke for several years that I often lived on less than $20 a month for food.  I nearly died with my transplant, had to relearn to walk, wasn't allowed to eat or drink anything for 4 months straight, and was still undergoing surgical repairs two years later.  In the middle of recovering, I dealt with my grandmother on hospice, cleared her hoarded estate, went back to school, graduated with a paralegal degree, and bought a house I'm now fixing up on my own.  Lots of what I went through sounds pretty horrific at times - and yes, it felt that way, too.  But I CHOSE to fight through and I've come out the other side in wonderful shape with hopes for a fabulous future.  I fought those battles one day at a time. I certainly didn't expect to find myself where I'm at now, but it was worth it.

Hey, I jumped out of a plane while I was on D.  It was amazing.  When else was I going to do that?  I wanted to remember that I wasn't just a patient - I was a human being with a need to live, and I planned to do it while I could.

I won't judge anyone who doesn't have the strength to fight, but don't think because we talk about the fighting parts on here so much that there aren't good times in there that are worth the fight.

That's very inspiring!

I think everyone goes through times when they wonder if its all worth it.  For me every once in a while I'll have one of those days where I feel almost normal and my body is fresh and my mind is sharp.  Those days keep me going, they remind me how awesome it is to be alive.  I live for those days and I savor them.

[nanadar]

OMG, I had no idea that I would get such an outpouring of support from you guys.  I have really been feeling alone in this.  The pain is just under the rib cage , from the centre to the right side.  I've kept a "pain diary" daily / hourly as to pain level, gasping spells , when I do PD,how warm my fluid is, when and what I eat, fainting spells, activities I was doing at the time..... all in an effort to see if I can find anything that ties it all together and what brings it on. It does seem to be worse at night when I try to lay down.  And yes they are thinking of switching me to Hemo. but only after they do more tests next week. My hubby thinks it's Gaul stones which are being aggravated by the PD fluid. .... but he's a chef not a doctor LOL
Unfortunately I do not have a pastor to talk to because I am Pagan, and I'm one of the "elders" in the community, and I do not belong to any particular coven .... others come to me for direction LOL  I will talk to my social worker and see what she has to say. I really hope you are right that there is a light at the end of the tunnel cause right now all I see is a very long dark tunnel.  jbeany you are an amazing person to have gone through what you did and come out on top. I applaud you for it. I just wish my quality of life would get better cause right now I am not living, I'm just existing.  My hubby says I need to make a "bucket list" to give me something to look forward to achieving... but really there is nothing I want to do... I've pretty much done everything I ever wanted to do. It's been a great life, I've done more in my life than most people get the chance to do. I've traveled and I've rode the world's tallest roller coaster. I've made a huge difference in 100's of people's lives as a leader of an inner city children's group... hell I started that group as the first ever in Canada. I have awards out the wazoo for it. I've taken in foster children and touched their lives and watched them grow into responsible, caring adults with families of their own. I never want to be dependant on a " machine " ( even if it is just manual ) in order to live. For 20 years I've said... If I ever have to have outside support systems to live... just pull the plug.  I think my family is spooked because I'm not afraid of dying. I just see it as the natural order of things... the wheel of the year turning... birth, life, death and rebirth. Thankyou for your words of support, I hear you all and you have certainly given me something to think about and pray on.
blessed be

[Deanne]

Your CKD experiences sound horrific. Your life experiences though.... Something you haven't done yet that we need you for: You haven't let us get to know you. I admire everything you've done so far and it sounds like you'll continue helping the world as long as you're in it. I'd never judge you for your decision to discontinue dialysis, but I hope you're able to hold out a bit longer to see if things improve.

[Barry]

I was in this spot a few weeks ago I had actualy stopped going to dialysis for 2 weeks . I am tired of not doing what I used to do I am not working living on disability my girlfriend of 4 years could no longer take watching me like this and sent me a text to break up with me etc. This shit does suck I have returned to going to dialysis reluctantly they even had the cops come find as i just refused to go . not sure why i returned to be honest and not sure how long i will continue I am looking into moving back to maine were I am from as I will be closer to friends and family.

[nanadar]

You need to get to know me ?// not much to know really. I lead a spiritual life with love for everyliving thing in the universe. I've been promoting taking care of the mother earth before recycling was comonplace. I am a 2nd degree Reiki practioner so I live by the "principals of Reiki" which are.....
Just for today... I will live the attitude of grattitude
just for today ... I will not worry
just for today... I will not anger
Just for today ... I will do my work honestly
just for today .. i will show love and respect for every living thing.

Yep that prettymuch sums it up for me. I tred lightly and harm none. ( people, animals,bugs, plants, the earth. )
I am a herbalist so I make potions and concoctions out of wild herbs. What others see as "weeds" I see as free food. LOL
I have a wicked sense of humour and play practical jokes on my hubby. ( he started it LOL)

I've traveled... been to Disney land twice and disney world once, Are you seeing a pattern here??? yes I am a big kid.?
I've been to Mexico, and England.... actually hubby and I eloped in England. got hitched by a very nice Druid Priest over there. Bought my wedding ring from a band of gypsies in Picadilly Circus in London. LOL

Have been a leader with Scouts Canada for 33 years. Donate my time and resources to " Alberta Learning and Literacy Day" because i believe that all children should embrace reading and learning.  I teach a session on "story telling" there every year for the past 10 years.
I love camping and the outdoors and hunting wild mushrooms. I own 380 acres of land out of the city that allows me to do this without the fear of pesticides. I have 6 lovely grandchildren by heart ( from my foster kids) aging in range from 2 years to 14 years old.
Thats about it. I'm a pretty simple person who lives modestly and helps others whenever i can. As most pagans we are not rich and we always share with whoever comes knocking at our door in need of a meal no matter how little we have in the house.
Blesses Be

[billybags]

nanadar, first of all welcome to the site.

 I had tears in my eyes when I read your post. It is not an easy road to travel, you will often dis pear and question your decision to do this. I wont say it will get any easier but you will come to except it. give it time. Think of all the people that love you, think of all the things you have left undone.


I am a carer for my husband and it breaks my heart seeing him struggle, but to-morrow is another day and all could be well. You sound like you have lived a full life, doing good and helping others, its your turn to be helped now. Hope to-day you are feeling a lot better.

[cariad]

You need to get to know me ?// not much to know really. I lead a spiritual life with love for everyliving thing in the universe. I've been promoting taking care of the mother earth before recycling was comonplace. I am a 2nd degree Reiki practioner so I live by the "principals of Reiki" which are.....
Just for today... I will live the attitude of grattitude
just for today ... I will not worry
just for today... I will not anger
Just for today ... I will do my work honestly
just for today .. i will show love and respect for every living thing.

I love this and will have to try to adapt it to my own life.

I had a pagan friend once who signed notes 'Blessed Be' too. It's just so lyrical, I always loved it.

Your take on life is simply beautiful. I wish I were one of these low-key, live close to nature types, but I'm a dyed-in-the-wool highly strung urbanite. Perhaps I can use your mantra to begin my reform?

I agree with jbeany that your husband, probably with the best of intentions and a broken heart at the thought of losing you, still cannot expect you to keep to some pact. I truly hope that you get your pain addressed and will be able to stay with us, but if you just cannot, all of us understand and will wish you a peaceful passing.

John, it is often said here that the fear of dialysis is worse than the actual dialysis. Now, that is not going to be true across the board, but please understand that you won't know how this is going to affect you until you try it. It is most definitely not only horror stories here, but those do stand out. It is so normal to go through a period of depression, i know Bill Peckham talked about this on a video I saw about him once. Again, it's your choice whether you want to do this or not, but if you are going to refuse dialysis, I would say you must tell your children and give them the chance to say goodbye. It's not that this will make losing you any easier, but at least you will give them the opportunity to say or do any last things they want with you still here. I hope you can find adequate treatment for your depression and give dialysis a shot.

[nanadar]

today was a much better day . my PD Nurse made arrangements for me and some family members to talk to the special nurse who deals with " personal Directives" so we can put one in place and the family will understand better. That alone gives me a feeling of comfort. I actually did my first "away from home" dialysis exchange today. It went well except for the part that I forgot that I needed some way of making the bag be higher than I was so I sat and held the bag in the air for part of it LOL
My 3 yr old grand daughter thinks " nana is funny when she takes her medicine" seeing me sit there holding the bag over my head. LOL
It was a good day and I was surrounded by people who care about me... I am truly blessed.

[dialysisadvocate]

As one of the posters stated, PD does not work for everyone - has the doctor discussed other types of dialysis that might work better -- I am so very sorry you are having a hard time but do understand --- This group is a wonderful support group and you can lean on them for support ------ they are always here as I have seen - for one another
Roberta Mikles RN www.qualitysafepatientcare.com

[jbeany]

It was a good day and I was surrounded by people who care about me... I am truly blessed.

This is good to hear, even if the good day is "just for today."  Glad you are hanging in there. 

[lmunchkin]

Nanadar, people here understand fully what you are going through!  We all love you and will not judge you.  Dialysis is a Life Support for those with ESRD.  That is fact!  Sounds like you are at Peace with this decision and that is as it should be.  Although, selfish me, would like to have you around alot longer, but that is "selfish" me.

I won't let my husband go either!  So I understand where your husband is coming from.  He loves you.  He doesn't want you to leave and it WILL hurt! We are born, we live, then we will die!  But those left behind will Hurt & Grieve, as it should be.  That is life!  He will be at peace about it too, and when he is serious about it, as much as I hate it, I will honor his wishes.

No one here will judge you cause they know what it is about!

God Bless You,
lmunchkin

[kitkatz]

One day at a time.   The only way to survive while having ESRD and being on dialysis.  All I have to do is get through today, this hour, this minute, and some days this second!
Find something to do that is fun, even it is lying in bed with a book or TV.  I have taken up watching WWE wrestling matches this past year.  They are my crazy fun!
After thirteen and half years on hemodialysis, I have good days and bad days.  I still have days where I wonder is it ll worth it?  Other days are filled with joy and blessings.

 

[Whamo]

    This is how I feel while I am in the chair.
    This is how I feel the day AFTER dialysis.