I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Goofy on September 29, 2009, 05:15:46 PM
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My hands are shaking while I'm writing this e-mail. I received the results from my blood test and my kidney function has declined to 6%. I know in my mind what the right thing to do is but I still don’t want to start dialysis. I almost picked up the phone and made an appointment with the surgeon to get my PD access brought out from under my skin, but I just can’t do it.
I don’t know what is wrong with me. I say I’m not in denial, but it sure sounds like I am. I just can’t do it. I just can’t change my life. I don’t want to live on a machine the rest of my life. I was just thinking this morning while I was getting ready for work. I was thinking how horrid it would be to have to do all the dialysis crap in the morning in addition to just normally getting ready.
And just last night when I went to bed, I thought how awful it would be to have to hook myself up every night to a machine. I was thinking about how I fall asleep on the couch and when I wake up, I just go right upstairs to bed. I won’t be able to do that anymore.
Just say I went out on a Saturday and got home at midnight, no matter how tired I was, I’d have to get myself hooked up. Then I’d have to lay in bed until I do the total hours required. Then if I had to do an exchange at work, I would have to be in a sterile room. I know some people say their workplace will accommodate them with a “private” room, but if they can't, I'd have to use the "general" washroom. Would you want someone at work filling their stomach with fluid and then dumping it in the same washroom you use? I know I wouldn’t like it. I believe a lot of people would look at me and treat me like you have some kind of contagious disease.
Although I keep saying I’m not in denial, I still can’t believe this is happening to me. Things like this only happen to other people. I knew my results would not be good because for about 2 weeks now, I’ve had a really strong urine/ammonia taste in my mouth and I know that is not a good sign. And I’ve been having a lot of muscle twitching which is not good either.
My doctor wants to see me tomorrow. I didn't want to tell my husband but he overheard me talking to the doctor. Now my husband is insisting on going with me. I really don't want him to. I don't want to be bombarded by him, the doctor and the nurse telling me what I have to do.
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I'm sorry your so stressed out, and I hope you can find some peace to do the things you need to. :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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I understand. And I feel for you.
I had the same fear and trepidation.
But I knew what would happen if I refused to start dialysis: My body would make the decision for me. That is, sooner or later I would get a crisis: Violent illness, call 911, sudden frightening trip to the Emergency Room by ambulance.
I resolved to start dialysis at a time of my choosing, rather than when my body forced the issue.
You can wait--but you'll just get sicker.
Listen to your body and what it's telling you. It's asking you for help.
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Goofy if you don't start dialysis you are headed for major problems!! You will become terribly sick if your kidneys totally shut down you are going to be VERY sick!! When hubby had to start dialysis he asked the neph if he had a choice . She said sure you do - dialysis or death!! Not much of a choice but he chose to live!!! Goofy, dialysis is not as bad as you think. The hooking up and disconnected will just become a normal part of your nightly and morning routine. Hubby says the thoughts of dialysis is much worse than the actual dialysis.
Goofy it is your choice if you start dialysis or not but just know that things can get really bad very quickly!!! Take care!!
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Goofy,
I so feel for you. You are going through real grief. It is grief for the life you are losing. But what you are having trouble realizing is that that you will still be alive. Dialysis certainly changes life, but it also gives you life. Without it you face certain death.
As hard as it may seem, it is important for you to try to reframe what you are thinking about dialysis. Right now you are seeing only the things that you may not be able to do because of dialysis. But you are forgetting to consider all the things you WILL be able to do. You will be able to live a long an full life. You will be able to work if you want, to laugh, to love, to see the beauty of the world around you and feel the warm kisses from your husband and family.
You will be there to receive the love of those who love you now.
Please don't put this off so long that your health and life are jeopardized. You have so much to lose. And so does your family.
With caring,
Aleta
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Goofy..... I just started dialysis and Yes its scary and I sure did not want to do it.... I wish I could of done PD..... but I had to do hemo.... Dont worry about your feelings they are normal.... you will get past all of this and move on with your life.... There are so many supportive people here... Some of us like Aleta who are caretakers that are here daliy and understand what you are feeling..... its ok.... we all understand..... been there down that stuff.....
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I understand that you are scared and well remember that feeling. I will have been on PD a year on the 20th of October. Yes, some things have changed in my life but for the most part my life is the same, I just feel a lot better now. Only you can make this decision but for me PD is not that big of a deal. If you choose the cycler you will be asleep for most of it.
I hope you will be able to make the best decision for you. I feel for you and wish I had the words to make you understand that is really will be ok.
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Aleta has it nailed! You so rock (why are the awesome women all taken???? :rofl;)
Goofy I won't sit here and write stuff that sounds like "I told you so" because that's just plain rude.. but I am also not surprised at these results. You have told us about some of the symptoms you are having and they are all classic signs of ESRD. Now you are there. You can't hide!! You have a GFR of 6. That's what mine was when I started. Most people start at GFR 10, or higher.. you have done much much better than a lot of people - and that's fantastic... but now it's time to start.
It is scary, and your life WILl change.. but you should NOT focus on the negatives or potential negatives!! Look at regulars here like Zach, or KitKatz and many others who do dialysis and live real full lives!!! Yes, you need to adjust, but it's just to a different stage of your life. Doesn't mean life is over or that you can't continue to enjoy living life - that's what dialysis is there to help you keep doing!!!
Try and focus on the potential GOOD things about starting - like feeling more clear headed, and having a bit more energy and stuff.
I am sure you will be surprised once you start that it's not as bad as you thought, and it's worthwhile you started.
This is important. Please do not put it off any longer - you're only putting YOURSELF at further risk...
:grouphug; :grouphug; :grouphug;
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I agree with RicardMEl. You need to take care of yourself. YOU are the only YOU we have here!
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Goofy you sound like me. I wasn't scared of the "unknown" I was scared of the KNOWN. I Knew my life would change. I knew I'd probably have to go on disability and become a loser. I knew I'd have to move back home to be closer to family. I went down kicking and screaming too. Remember you can come here and kick and scream everyday. We will be here for you. I remember praying for the Lord to just take me before I had to start dialysis. I really know how you feel. But, there is a tiny will to live that you need to listen to.
:flower;
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Goofy, We have all been there, trust us you will be fine. None of us chose to have this shit, but you will get through it. We are all here for you.
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Hey Goofy - don't fret about whether or not you are in denial ... you ARE in denial. but you know what? None of us blame you in the slightest! We sooooo understand how you feel. Does it help to think of it as inevitable, and not something you have any control over? You HAVE to do it - and soon. I take it you are lucky enough to be going straight to a cycler? If so, there's no time taken in the morning. It takes about 10 seconds to unhook and off you go. If you've gone to bed a bit late, you can get dressed while the last drain/fill is happening. Yes, it's bloody awful getting used to being hooked up to a machine, and you need to think about the 9 hour thing - but you (and I) have no choice so you do what you gotta do. Please feel free to PM me if you have other questions - or give me your phone number and I'll ring you and chat through it if you like.
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I have 8% function and dialysis saved my life. The alternative, pulmonary failure and cardiac arrest. Once you've had that you'll appreciate your dialysis :pray;
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Im sorry but its no good patting you on the back and going there , there. You say how awful it will be to fall asleep on the sofa , then wake up and have to hook up to THAT machine , well think how awful it would be to fall asleep and NEVER wake up again ! Im sorry if im being hard on you , but you have to realise its LIFE or DEATH there is no inbetween. Before i got the the stage of having to do dialysis i said NO WAY am i spending my life hooked up to a machine , my life was outdoors, my life was horses and i could see it all ending. But the time did come and i thought hell do i want to die or just spend 20-30 mins a day doing something that will keep me alive and do you know ..PD is a breeze! Its no harder than stopping for breakfast, dinner, tea and supper ,the things we do every day without even thinking about it and thats how it becomes !. Again i have just had to face a crisis of going on to hemo , my biggest nightmare ever , my biggest fear and i swore i would never do it , but here i am one month in and i didnt have the easiest start believe me. But i cant give up life either ! Please think seriously , i promise you once you step onto that dialysis road , you will wonder what all the fuss was about , you've had the hardest part done of putting in your cath ! You will feel more alive and brighter than you have felt for ages ,honestly !
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I know this post was not meant for me but THANK YOU!
I really like the "Yes, you need to adjust, but it's just to a different stage of your life. Doesn't mean life is over or that you can't continue to enjoy living life " (thanks richardmel my new hero)
Goofy, I am thinking of you and I send lots of love and love and love.......
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When my grandson was ten months old, he picked up my hubsands bongos and carried them to the couch where my husband was sitting. He handed them to my husband, pulled himself up onto the couch, and kissed my husband on the cheek. It was the most precious thing I'd seen and one my husband wouldn't have experienced if he had not chosen dialysis.
Life brings change to all of us. Some need machines to keep them alive. Others need canes or wheelchairs to get around. Sometimes we get soaked in a rainstorm. Other times, we feel the intense heat of the sun. Some experience poverty, others experience abundance. Whatever our experience, it's all a part of being alive.
You wanted a miracle Goofy. You have one. It's called dialysis. It's time to choose and I hope you choose life.
:cuddle;
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apologies in advance for being brutal, but goofy my friend you have 2 choices.
1. leave things as they are and suffer the end result of this.
2. embrace the next chapter of your life and adjust to it as best you can.
please do not hesitate to include your husband in this as its his journey as much as yours
i wish you all the best for the future
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Good advice in these previous posts, I say start dialysis. You WILL feel better for it.
I felt like I was ready to die when I started, swollen ankles, shortness of breath and blurred vision. Just wanted to curl up and sleep.
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Part of life is change....it is up to us to adjust to the change. We can make it a positive experince or negative. I know when there is a BIG change just thinking about it is scary and you hope it just goes away but once you actually accept the change and start living it you find it wasn't as bad as you thought it would be.
Knowledge is key factor. Learn about your condition and the treatments you will be invovled in. This gives you power over the situation.
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Also embrace all the support you can recieve from family and friends. Don't try going through this journey by yourself.
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:cuddle; Hugs to you Goofy
I also have PKD and have just received a transplant. I was on PD for just over four years. Manual exchanges and APD.
I was dragged kicking and screaming onto dialysis.... it was not something I was ever going to be ready to do. But like my friends above have posted, in the end your body decides and you have to just give in.
You will start to feel better and after a period of adjustment, dialysis will just become part of your daily routine. I am still not use to NOT doing my exchanges! You are lucky to be able to try PD. You will be able to fit into your day. Just a bit of forward planning and it will all be OK. There are many hints on here on traveling and doing exchanges while you are "out and about". I have done exchanges in some very strange places! If you have any questions you just need to ask!
I managed well on dialysis. I can't say I liked it..... but it kept me alive.
I am still here enjoying life, nagging my husband and yelling at my kids!!
You can do this. You have an inner strength and courage that you are not giving yourself credit. :grouphug;
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Hi Goofy,
Please start asap....you need to, for you and your hubby.
It will suck in the beginning, but I think it will suck more the longer you wait.
I felt the same as you in the beginning...and truthfully I was in denial for a long time even after I started. Sometimes I still lapse into denial that dialysis is a part of my life, but I am glad it is. If it wasn't, I wouldn't be here. It was really hard in the beginning, and tough to drive into treatments sometimes, but it was also EASIER than I thought it would be in many ways, so it was almost a relief just to start.
Talk to your hubby, and try to read the positives on this sight....we do vent about scary things, and you will to, but please don't let that stop you from saving your life, ok? We are all behind you 100%.
Good luck and keep us posted. I expect you to let us know how your first treatment goes very soon!
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well, she hasn't been around for a few days now, so i'm hopefully anticipating news that she has been initiated into the fold and is feeling better about it all....
:flower;
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...or shes just burying her head in the sand ? Either way i hope its not illness keeping her away .
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if illness is keeping her away, i'm sure when things level off for her that illness will also bring her back here.
to tell the truth, if i had found and read what is on this site before i had to go on dialysis, i would have been more fearful of the whole process. as it was, dialysis just 'crept up on me' before i even knew what it was.... strangely, after the fact, i do find this site comforting, now that i have been on dialysis for more than 2 years...maybe that's not so strange. i don't see how anyone that is not on dialysis could comprehend the actuality of the process and what goes on within us all...
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I still can't believe its happening to me, at times.
On the rare occasion I don't do my pd or fall asleep with out starting my treatment, I have phantom tubing that I am still looking out for.
I went through a period of time that I thought I started too early (15% but more symptoms than you). Make peace with starting and that will help. That can sometimes be harder than actual dialysis.
PD preserves kidney function, and that makes a big difference... possibly less meds and less of the ones you have to take, and most definitely less fluid restriction
Good luck and lots of love
Girl
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Good advice in these previous posts, I say start dialysis. You WILL feel better for it.
I felt like I was ready to die when I started, swollen ankles, shortness of breath and blurred vision. Just wanted to curl up and sleep.
For me, the most frightening symptoms were mental: Inability to concentrate; loss of short-term memory; loss of initiative; short-tempered and irritable; unable to sleep. If I didn't know my kidneys were failing, I would have thought I was getting Alzheimer's Disease.
It's truly remarkable how a year of dialysis has ended all those symptoms.
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I'm still here. I've been in a "mental" prison the last few days. I have decided not to start dialysis at this time. I've been waiting to post because I'm afraid people are going to give me a hard time for not starting.
I REALLY DO respect everyone's opinion. I know most of you understand what I'm going through; you've been there before. Before my doc visit the other day, as usual, I went back and forth in my mind.....yes, no, yes, no....... I thought I finally felt I was ready to say yes and as soon as I walked in my doc's office the first thing he asked was "are you ready to start" and for some reason the word "no" came out of my mouth. I talked with my doctor for over an hour and he still couldn't convince me. My husband came with and I was so surprised he didn't "gang" up on me in the office. I even got physically sick because I was so upset about having to make a decision.
I can't even do any tasks at work because all I do is sit there and look kidney stuff up on the internet. I think I'm looking for some magic mathematical equation that will give me my answer. Of course I can't find one.
Just a few weeks ago before I left for vacation (From all your input) I sent my neph an e-mail telling him I would start as soon as I got back. So of course he brought that up at my appointment.
You guys may think that I'm not listening to what you are trying to tell me but you seriously are helping me. Before I came to this board, in my mind, dialysis was not even an option. But with all your support, I think I'm finally coming to terms with it. In my appointment the other day, I was asking my doctor a lot of questions about PD. By the end of the conversation, I told him I think I'm almost ready and if I could just wait for "one more blood test". He was disappointed but said yes.
My CO2 level was very low in my last blood test so my doctor said I need to start taking sodium bicarbonate. I looked it up on the internet and it says its supposed to help slow down the progression of kidney disease. So I'm going to start taking it and see if my numbers look better in my next blood test.
With all your support, I've gotten a little closer to saying yes. I've actually have gone so fas as to tell my manager I may be starting soon. And I'm even I'm starting to get my room ready for all the supplies. So please bear with me. I am making progress.
Thanks again for sharing your experiences with me and for all your support.
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Goofy — I'm sure, if you had the choice, you would remain in your mother's womb. You are that sort of person. Others strive for change whereas you are the opposite. We are all different. You sound as though you are beginning to accept your lot and will, in time, make the change, dragged screaming into a new world.
Like you and all other pre-dialysis patients, I have to prepare myself mentally for the change. I've now gotten to the stage where I'm getting impatient to get the change over and done with. Try to welcome change. It might help you if you can think through and get the right mental attitude to accept the inevitable.
Brings to mind the advice given by mothers to their virgin daughters who are about to be married: "Lay back and think of England".
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I could be harsh , but its not my nature, I honestly think the only way you are going to start it when you dont have a say in it anymore , when you are fighting for breath from being fluid overloaded and cant put one foot in front of the other is the day you WILL have to start. You will end up going in as an emergency , everything will be done fast and furious , you wont get a choice , you wont get any time .. et voila ..you will be on dialysis !
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I understand how you feel and
I do hope you will find your way.
Hopefully you will come through alright.
I wish you all the best from Kristina.
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when you are fighting for breath from being fluid overloaded and cant put one foot in front of the other is the day you WILL have to start. You will end up going in as an emergency , everything will be done fast and furious , you wont get a choice , you wont get any time .. et voila ..you will be on dialysis !
That was me. Had no idea what dialysis was really. At least you know what you're in for Goofy.
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I have to say when I read the first line of your latest post Goofy I sighed deeply and felt "oh no."
I'm not even sure why this is upsetting me so much - it's not my life and you're not really someone I know except for words on a forum.
I do worry though.
Clearly your doctor worries.
Clearly it is your perrogative and your decision for your life. Just remember that decisions you make affect others in your life - like your friends and family - as well as you.
The other thing that worries me is that while it's great you went to the internet to search out information to guide you - afterall that's obviously how you found this very site which you have used to reach out - and that's a positive thing... I worry that a little too much "research" is just fueling your delaying. For example youve written that you'll see how the sodium bicarbonate affects your labs and decide. i get the feeling that if you see even the slightest increase in a lab value you'll take that as a sign that the extra med is extending your kidney function and you'll be fine.
I'm with your doctor - I'm disappointed. You already went back on your word - you went on your vacation and you said you'd start when you got back.. now you won't.
The other thing is in your very message - you're teaing yourself internally over this decision it's consuming your every waking moment(or so it seems) and making you ill to contemplate. Putting stress on yourself, which WILL raise your blood pressure, is dead set 100% BAD for your kidneys!!!!! You're absolutely doing yourself no favours - physically or emotionally - by not starting.
I really wish you would reconsider.
Still it's your decision. Good luck.
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well goofy, i guess you have chosen the right screen name, at least. you are being very selfish and childish, as far as i can see, just like i was even before i was diagnosed. i lay in bed for about 6 months, filling up with fluid and barely able to crawl -sometimes literally crawl - to the bathroom.
i refused to go to the hospital, believing that the hospital would kill me, like they do to so many.
it wasn't until i had gone thru the process of diagnosis and treatment (dialysis) that i realised what a foolish, selfish, immature burden i had been. fear of death makes people very, very stupid.
maybe you think you're 'special' and a miracle will save your kidneys from failure.
maybe you're just one of those freaks that gets their kicks from pretending to be sick so they can hang out with the real sick people and feel like they belong. i don't know. what i do know is that the evolutionary process weeds out the weak and the stupid quite effectively, and often, we support that process with our ignorance. good goin!
:waving;
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LL - I'm sorry but I don't think your comment is very constructive or helpful to Goofy.
I understand your point to an extent, but this site should be here to support people going through tough times rather than ridicule or put them down. As everyone knows and I just posted I myself am disappointed with Goofy's decision - and while I said as much I don't feel it is right to go on about it or try to make someone feel horrible for the choices they make.
In the end it is Goofy's life and hers to do with as she pleases - even if those of us out here reading her posts feel she is making unwise decisions for herself (right now anyway) I don't think it's right to make the kinds of comments you have done.
You're entitled to your opinion, though. This is mine.
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Goofy, girl, all I can do is send caring thoughts and prayers your way. When my doctor told me that I would need dialysis, my brain screamed. My brother had died just 10 months before after spending 10 years on dialysis. But I knew I had to have the dialysis - I wanted to live to see my grandson grow up.
Sure, dialysis has messed up my life (had to stop teaching and travelling as I used to), but just feeling better and continuing to be part of my grandson's (and daughter's)life is all I can ask.
I am trusting you to do the right thing,.
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As long as we are alive, we have free will. Sometimes control over our treatment is the only control we have (which isn't really true).
PKD is insidious. You can be diagnosed early and you have to watch and look for the signs that your kidneys are failing. Knowing the final outcome sucks. Dealing with that knowledge sucks. Realizing that you can't change much (best case scenario, you can stave off for a few years - I stayed at 15% for years - or if you are lucky, you can get a preemptive transplant) ultimately, you just sit and watch as the time clicks away and your body falls apart.
Goofy, the fact is that right now you have a choice. One day, your potassium will get so high that you won't have a choice. Unless you have advanced directives in place (a legal document that outlines your wishes re: medical treatment or NO medical treatment) and a Living Will, when the time comes that your muscles weaken and you collapse, or you can't get out of bed - the ambulance will be called, and medical professionals will do what they need to do to keep you alive.
For many members here, they came to dialysis suddenly - they had no choice. You have the burden of choice.
Also, please see that everyone is projecting when they write about your dilemma. Everyone here at IHD has a dialysis story and are alive to write about it. Those aren't here anymore have left their words for others to learn from. It is a great legacy.
I feel your pain. I put off dialysis for as long as possible. (I even was late for my first appointment, because I insisted on getting my dry cleaning first).
This has been covered in a lot of posts, and please forgive me for being lazy and not linking to those posts, but you need to grieve the loss of your kidney function. You are in the bargaining stage of grief. It is a process.
The five stages of grief http://www.cancersurvivors.org/Coping/end%20term/stages.htm (http://www.cancersurvivors.org/Coping/end%20term/stages.htm):
The stages Kubler-Ross identified are:
* Denial (this isn't happening to me!)
* Anger (why is this happening to me?)
* Bargaining (I promise I'll be a better person if...)
* Depression (I don't care anymore)
* Acceptance (I'm ready for whatever comes)
I would just advise you to stop obsessing, find a quiet place and clear your mind.
Think about you, how you feel, and how you want your life to be (realistically). It is possible to live on dialysis. So much of this disease is mental, you feel sick, your mind can be foggy, everyone has an opinion, but it really is out of your control. The damage is done. It is a huge adjustment, let the surviving and living begin or make peace with the fact that your days are numbered, and enjoy them as Art Buchwald did.
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When some people see another about to cross a street into traffic, they scream out. Others sit back and observe, watching to see what is going to take place or say nothing because they don't want to come across as rude. And others jump into the traffic to try to save another person's life.
Goofy, the decision is yours. If you want to live, you'll take the appropriate action and if you want to die, then you will continue on the path you're on.
Good luck.
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WOW, LightLizard, your words were pretty harsh. I'm somewhat taking offense to it but on the other hand, I'm not. Well actually, I having a hard time NOT taking offense.
I think I'd have the same attitude you have toward someone like me but I don't think I'd go as far as to say someone is "pretending to be sick" just so have "something to belong to" and feel a need to "fit in". I have a very supportive family, group of friends and coworkers. I don't have the need to "feel like I fit in somewhere". I came here looking for support from people who are or have been in my place. Who better to get information from then someone who is going through it themselves.
I'm not sure if your attitude toward me is "directed" to me or if that is just your way of telling someone to "sh** or get off the pot"?
I've mentioned before that I do hospice volunteer work. The reason I do it is because I have compassion for people. We all know death is inevitable but that doesn't make it easier to deal with. Everyone accepts and grieves in different ways. Again, I don't want to judge you based on the things you've said to me but through this board, you only see "part"of me. You have labeled me as "selfish". You can ask anyone around me, I am the LEAST selfish person they know.
Can you answer a question......why am "I" being selfish by struggling with my decision? Why can't it be my family and friends that are selfish for pushing me toward dialysis? I can understand why they want me to start. Maybe they are being selfish by wanting me here. They don't have to go through it. Its always easier to tell someone else what to do.
Since I've joined this board, I've never said that I was not going to start dialysis and just let myself die. I just know what is ahead of me. This will be for the rest of my life. I came here to look for support. Maybe I haven't made myself clear, since I've joined this board, I have come a lot closer in accepting it.
I've also mentioned here that I'm highly-sensitized and the chances of getting a transplant are pretty slim. I am 100% sensitized. Do you think I don't care about myself? Why did I recently travel 2000 miles to and from my home state to Cedars-Sinai Hospital to find out about programs for people like me? I do care about myself. Sometimes it takes people longer than others to feel like they are making the correct decision.
I know I do a lot of research on the internet regarding my situation. Its my life, my disease and I want to be informed to make the best decisions. Do I do too much research, well, maybe, but knowledge is power.
You, yourself, said you went kicking and screaming. You even waited until you had fluid overload. Do you see me in that position? No. Am I going to let myself get that bad? No. I know some people may say I will if I don't start, but I'm not going to wait until I'm at death's door step to start.
You also said your "fear of death" stopped you from going to the hospital. Well, that's where we are REALLY DIFFERENT. I have no fear of death. Do I want to die today? Will I not start dialysis so I can have control over my death? The answer to both questions NO.
You also mentioned you were immature and a burden. I, on the other hand am not a burden on anyone. I want to take care of myself and I do. I don't sit at home and tell my husband and children, "oh, I'm so sick". "what am I to do". If anything, they all know what is going on but I don't necessarily want them to have to "struggle" with me to make a decision. That's why I came here.
So next time you judge someone, make sure you think twice before you tell them how ignorant they are. And heed your own words............ "i don't know. what i do know is that the evolutionary process weeds out the weak and the stupid quite effectively, and often, we support that process with our ignorance. good goin!"
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Thanks every for being so understanding. I hope I've never posted anything that was offensive to anyone. My goal is not to judge who is right or wrong, my goal is to be informed.
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LightLizard, Do you remember when you sent me an e-mail on September 20, stating the following:
"hi. just a heads up, someone may have mentioned this before, but the name you have chosen was used not too long ago by a woman that was well-loved and on the board from the beginning.('Goofy Nina') she passed away not too long ago, so i thought you might want to know that your name might bring up mixed feelings in some.
and i don't mean to scae you, but with a kidney function less that 10 percent, you won't last long. you'd best get pushy with your doctor, and very soon!"
good luck
LL
(wayne)
When you mentioned in your last posting that I "have chosen the right screen name", I started to wonder if that is why you were so insensitive. I sent you a reply but never heard back from you. I just looked in my sent box and I don't see my response. Perhaps you didn't receive it either.
I said after I joined, I saw the similar name and I didn't want to upset anyone. I also asked if it would be best to change it and then send an e-mail stating I had changed my screen name. Since I didn't hear back, I figured it was OK to leave it.
Have a nice day!
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Sorry for all the replies I just sent, but I felt I had to stick up for myself!!
So thats it for me. Originally I was just about to start packing things from my closet to make room for the PD supplies (that will eventually come) and I thought I'd just check the message board.
Now that I've wasted an hour thinking on how to respond to LightLizard, I'm now going upstairs and start packing!!
Again, I can't thank you enough for your support!!
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Again, I can't thank you enough for your support!!
You are so welcome! :cuddle; That is exactly what we are here for. :grouphug;
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Goofy, whatever you do is your decision and your choice. My husband put off dialysis as long as he could 12 years ago but back then we had no information on what could happen. You can get sick very quickly when your kidneys fail!! Hubby got really sick when PD stopped working for him 7 years ago. Fluid overload can come upon you so quickly you don't even realize it was happening. he had no swelling at all but the fluid was in his blood vessels and his lungs!! He had 25 lbs of fluid and didn't even know it!! I know LL words were very harsh but most people here just want the best for you and don't want you to get sick. I have never had kidney failure but I have been with my husband every step of the way and believe me it is not easy for the patient or their family.. As for it changing your life, like I said before it has not changed our lives all that much . It many ways it has made life better!!! :cuddle;
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Its worth a shot guy dialysis is here to improve your quality of life.
But you have the right to choose not to do dialysis.
Try and make your choice on facts and information instead of fear though.
When we are afraid of a thing sometimes we cant think too clearly and later regret our decisions.
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Goofy, Please take care of yourself. It is really scary starting diaysis, but you are one of the lucky ones. Many of us had to start dialysis in our 20's or earlier. Think of how long you have had been able to live without diaysis. You have been blessed to also live in a country where dialysis is avalilable for whoever wants and needs it.
It sucks to have to go on dialysis, but at least you have a chance to live. And you have us, no matter what. I
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Goofy , im not going to lecture or advise but would you mind me asking ..what exactly is it you are afraid of , that stops you from starting dialysis before the choice is taken out of your hands (well you still have the choice to refuse it ) but i mean if you do intend to go ahead with dialysis. Is it a change of lifestyle? Is it you would feel inadequate in some way ? Is it you dont want to be labelled? Whats the thing that is stopping you ? I did PD for nearly 5 years and thought i would hate it , im an outdoor girl , had horses, those and my dogs were my life ! I have never had a holiday or been abroad because of my animals , yet all through PD i rode daily , i still have my dogs and i always said if pd stops working thats it ! NO more , no way will i spend all that time tied to a chair with tubes coming out of me to make me live and yet strangely here i am , 2 months into hemo , trying to figure out how and what way i can get back on a horse !!! Dont mistake me , im still angry , still bitter ,even after all these years but i know i have it to do. Whatever your demons are , i hope you find the strength to face them.
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We don't all agree with LL's way of trying to get you to see sense Goofy - please don't take it to heart. Read some of his other posts and you will see it's not personal. But I know I am just worried that you will suddenly go downhill, and end up way sicker than you think. And, I'm sure it's so much easier to talk about dialysis when you're already doing it! But I guess that's our point. I think everyone's trying to point out that it really won't be that bad! I really meant it when I said I'd call you if you wanted to talk in real time. Also, I love that you're called Goofy. I didn't know Goofynina, but everyone always talks about her humour and wickedness, and your name reminds me of her.
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Goofy our neph always says he likes people to go on dialysis whilst they are still "well". It works you, stand a better chance of getting on with it. Go for it now while you are still relatively well.
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Goofy the name is fine. Although we all adored Goofynina (Susie) and we will never forget her, life goes on and I think LL was bang out of order saying what he said in his email. Don't worry it wasn't personal he has been in the past sometimes quite abrasive in his comments to people.
Going back to the main topic. Do you have conscious symptoms of kidney failure. I had no conscoius symptoms at all. I went onto dialysis kicking and screeming because I felt very well indeed with a full time job and not debilitated in any way. it was the blood lab tests which showed my slow kidney decline over the years had finally got to diaysis point.
If this is the case with you I can quite understand why you are finding it extra difficult to come to terms with it because in most cases patients are feeling quite sick when the need arises for dialysis and therefore are probably more mentally prepared.
Could I survive without dialysis? I'll never know because even though I was in complete denial, I felt I couldn't affort to take the risk. Make the decision Goofy, make the right one, Start dialysis now. Just come to this forum as often as you like and we are here to give you all the love and support that you need :grouphug;
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Goofy, if i didn't care, i wouldn't say anything. it should be obvious by now that i am not a fan of the 'politically correct' sickness. too many hide their true feelings for fear of being offensive and thus, isolated. i don't mind being isolated at all, in fact, most of the time i prefer it. nothing challenges my love of humanity more than people. ;)
my words may have seemed harsh, but they are only words. what you are actively doing to yourself and your family (and others that care for you) is much worse than 'harsh'.
may you find peace that is true.
LL
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Goofy....whew...I don't know how you can handle it. I was at less than 10% function when i went on dialysis for the FIRST time. I felt like death warmed over. I had fluid in my lungs and would vomit all the time. And when there was nothing left to vomit I would vomit some more.
And the SECOND time I had to go on dialysis....same thing. I felt like death warmed over. I've been on dialysis (PD) for about a year now. I know it's scary. When my doctor told me I had to go back on dialysis for the 2nd time, I made it to my car before I completely broke down. I sat there for about 45 minutes before I calmed down enough to drive myself home.
Goofy...you ain't seen sick like when your kidneys give out on you. I seriously felt like I was dieing....and I basically was. I wouldn't want anyone to feel like that. It horrible. Don't wait until it's too late.
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Almost every time I post in one of these areas I get into trouble with the "rude patrol". Since LL has pretty much eaten his lunch already, I'm going to try one more time:
I think it is great that everyone share their experience with Goofy. I do wish, however, that people would always be aware that your experience is not the same as mine and not the same as Goofy's (nor is mine). We never hear from those who made the oppositive decision because (oh well, I shouldn't go there). This a major decision and she is working on it. We don't know all her special feelings, special fears and special needs. You know, there are things worse that death about illnesses. I see them every day that I go to the clinic. I constantly remind people that the law says I can stop dialysis at MY will. The fact that that law exists reminds us that there are things about it worse than death.
Goofy feels well. I hope she will make the same decision that you are all hoping for. But it is her decision. She is informed. She has been warned and chastized and, from all accounts, is an intelligent human being. It is, I repeat, her decision and people should not come down on her (even as they shouldn't harass people with depression (LL)...
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Goofy, every day when I come on to IHD, I look for your post and read all the replies. I am still praying that you will make the right decision for you and do it quickly.
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Beings I was a caregiver in our dialysis experince I can't say I know what you are feeling and wouldn't even dare to. I was hoping though that you will give dialysis a chance and then if you decide it's not what you want to do you can discontinue.
Whatever you decide I will support you and we as a group will continue to help you through your journey.
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Well said Pam, and Dan makes a good point (and not rude at all mate! :2thumbsup;) - everyone's experiences are different and situations are unique. I think though the main point many of us are trying to get across is that there's a common outcome for EVERYONE with a low eGFR - and that is one of two outcomes - both beginning with the letter "D."
I thought about something last night while I was trying to get to sleep. Goofy said in one post above that she's not affecting anyone else with her decision because she's looking after herself and all that. But that's absolutely not true. Put aside all the people here on IHD that Goofy doesn't really know who care and want her to do the right thing for her (btw when I say "the right thing" I mean whatever is Right for Goofy - even if that means not starting and ending up with the other D - that is her choice) - but she talks about her husband(and I am not sure if they have kids or not) but hubby definitely and her extended family *are* affected by this decision if she likes it or not. If she gets even more ill from the symptoms of ESRD then he/they will certainly be affected with worry, stress, anxiety etc... potentially rushing to the ER, sitting with her for hours, worrying, wondering etc... and even if not, certainly they know what is going on and probably have been encouraging her to start along with the doc and everyone else - and that in of itself is a strain and worry and effect on them because they want you to be healthy(well as healthy as possible) and still functioning, not on your death bed.
Again it is Goofy's decision to make and I know the vast majority of IHD members will be there to support her with whatever she decides - and that's what we are here for. Those of us that say "start now!" only suggest it because we don't want you suffering from fluid overload/high K/anything else that can happen without dialysis at this stage that will make you wish you'd started and avoided all that. We only push through good intentions. However - it IS your decision and whatever you do, we hope it's the RIGHT choice for you.
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What I know is that when I was trying to make that same decision that if RichardMel and Zach had said those things to me rather than be an example that I probably would not have started. Some people, when pushed too far, will go the opposite direction on purpose. People calling it "cutting off your nose to spite your face". lol It is not totally a rationall experience or decision.
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THANKS everyone for your support. I really take your advice to heart and that's why I'm confused. I really believe everything people are saying but I guess each day I get by, makes me think just one more day, one more day and then the days turn into months. And this may sound stupid, but feeling well doesn't help me. It just makes me think I'm still OK.
Please believe me that I don't have any intentions of not starting. I'm almost there. I know the consequences of not doing it. I have the room ready for supplies, told my kids over the weekend it may be soon and my husband is taking the carpeting out of the bathroom I will be using and is replacing it with ceramic tiles (just in case fluid spills anywhere).
With all your help and support, I've come a long way. Like RichardMel said, he doesn't know why this concerns him so much because we don't even know each other. I think its because we all share a common bond. Although our families and friends support us, it's really hard to understand ALL the aspects of dialysis for people who aren't actually doing it. I know it effects families and especially care takers, but I think "our" common bond gives us a different view.
Thanks again for caring!
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:cuddle;
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Hi Goofy. I am not on dialysis myself, so I can't give you advice about that. I was a caregiver though. I dont think you deserve to be belittled for your choices, and I dont think anyone here has an opinion about YOUR choice that matters too much. Yes- its nice that people care. But what about your husband? Maybe your deepest discussion should be with him- thats just my opinion, my husband was on D- I was very greatful he chose to try it, it humbled me, and the time it gave us was so very special. I wish we would have had more time, we didn't get but three extra years. Just saying. The way you talk about your husband- he seems to love you a whole bunch. :flower; :flower; :flower;
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Please no offense to anyone, but it is really really nice that most people have husbands and wicwa or children or moms and dads or basically another person to consider in this decision. Some people don't.
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So sorry to hear about this, take care of yourself!
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I have been thinking of you.....just want you to know. Having problems with the kidneys is such a life altering experince for all involved. Please keep us posted on how things are going.
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Goofy,
.
Thinking of you...
Hugs.
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I don 't get it. If you can fix it why leave it broke?
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I wouldn't call dialysis a "fix" though.. I call it a band-aid of sorts. Keeps you going but it's no fix. Even a transplant is just a better and way more secure band-aid. The magical fix.. well that's a medical miracle that's yet to come. Stem cells baby! STEM CELLS!!
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I've read through this whole post. I can identify.
It really got me thinking of what I will do when my time comes to start dialysis. My doctors tell me that at 6% GFR a person definitely needs to start dialysis (I am at 15%). Like you, I'll be fighting the whole way. The hard part will be knowing when to give up the fight to stay off dialysis and when to start the new fight to live well on dialysis. Like you, I figure I'm not feeling that lousy so why start Dialysis. But one has to remember that kidney disease is insidious and sneaky. Your body will adjust to everything thrown at it, and your mind tricks you in to thinking things are acceptable. It is very likely that once you start dialysis you will begin feeling so much better you will wonder how you ever tolerated the old life. At least, that's what I'm hoping.
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Goffy-
I am sitting in the public library crying.
I want to make a simple to the point post, but my brain and heart are on overload here.
Much as I imagine yours are.
:twocents; Flip a coin :twocents;
Heads---- I flip a coin before the next doc apt
Tails-------I get the ball rolling
It may give you new perspective. If it doesn't.... well your no worse off. And It only took up a small amount of your time. And its not legally binding.
I get it, I really do. :cuddle; I get it, I really do. :stressed; I get it, I really do. :pray; I get it, I really do :(
I am unclear, did you get your access put in? If not that may want to be something proactive you do, I had my pd access in for 4 months before I started doing pd. I know some doctors are not crazy about this, and you may have already thought about it. It is traumatic to go to the Dr or ER and have a cath put in your neck then strait to the dialsys chair. Then soon after for an access, and what ever work goes along with your new access.
Your forsight is remarkable, I believe most gifts are double edged swords. Who knows you may never have any fluid spillage, but if you do its gonna be a lot easier to clean up. No one knows.
No matter how much you prepare (and prepare away) DIALYSIS is an unknown for you. You have every right to be scared and every right to want to hold on to your current life. You know, I know, and everyone reading this knows your current life will change. Thats a Bitch!!!!
I commend you for doing any Hospis work, Hospis came and helped my family last year as my grandmother passed from lung/brain cancer. I am in awe of all who can do this work. I imagine you have seen alot, and that is fuel for your fears, your just fears.
Good luck!!!
Your family and friends will have to learn to accept your decisions what ever they may be, and remember the only one who has to be at peace with your choices is you.
All my love and prayers
Girl
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Girl, thanks for your words of encouragement. I like your idea of flipping a coin, but I know myself too well. Just say I would call heads I do, tails I don't. If heads came up, I'd keep flipping it until tails was the answer!
I've actually have had my PD cath for almost TWO YEARS; its buried under the skin. When its time to use it, all they have to do is make a small incision and pull out the tube. There have been a couple times that I've been close to getting it exposed, but then a wait a few days and I feel better.
Partly of why I've had it for so long is because when my kidney function would reach a point where the doctor said its time. I'd wait for my next blood test and there we no drastic changes. So I would wait for further decline before I started. That's why I've been holding out so long. In my case, my kidney function declined very slowly. Although it would appear that it was almost time, I would hold the same percentage of kidney function for months at a time.
Now according to my blood tests, it looks like I really need to start but its hard to justify when you feel good. I probably "think" I feel well because I've declined so slowly, I probably don't feel the difference. I know a lot of people have told me that is the case.
Yes, I'm scared. Not scared in the sense of fear of dying but some days its still hard to comprehend I will have to live on a machine the rest of my life. Before I had the problem with too many antibodies, I always felt in the back of my mind that the machine may not be forever; there was still the option of transplant. But at this time, I don't ever see a transplant in my future.
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Oh Goofy , its so sad to hear you say ..i will have to live on a machine , its so not true. PD is going to suit you i promise , you are so much like me before i started. If you do manuals (which most places insist on , so your covered in a power cut etc) it takes 20 mins , thats all once you get into it . Its no longer than sitting having a cup of coffee! (or tea) and thats got to be worth it to keep living. Please dont fear it , its not half as bad as you think , if you do APD (overnight) you go to bed and when you wake up its all done ..day free as usual ! Im mean what else do you do when in bed :oops; dont answer that ! . You seem to have had this pd cath in for an awful long time ? I wonder why? I think you may hold the record for being prepared ! :rofl; Half of peoples battle is coming to terms with the catheter and you are already there ! If its any comfort , i have had to give up what meant most to me in life (my horses) Oh and i love my dogs ! But hey im still going, i hate Hemo , but am scheming to find a way to get back on a horse ! Life does go on , just try and think of it as by the time ive drunk my coffee , ive saved my life for another day ! :2thumbsup;
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Kickstart is right Goofy. Being on the cycler is not the same as living on a machine. When people say they live on a machine they mean they're on it 24/7. I don't regard myself as someone who is on life support!!! Even though, I suppose, technically I am! If I go out somewhere no one has any idea that I am sick or need a machine. It's completely my choice whether or not I tell them.
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I agree with Ks and Hanify. It's not like being on a iron lung or something that you MUSt be connected on 24/7 to live or else. Even with the 15 hours a week I am on hemo and physically connected to a machine, I don't see it that way. I feel it is the machine's job to assist me, clean me out if you will, but allows me to get on with the job of living. When I'm at my job, or with my family, or cuddling my cat, or hopefully cuddling another sort of girl ( >:D) ... I almost never think about the machine! I get on with life and enjoy what I can.
Yes it means adjustments to your daily routine for sure, but like KS says.. an exchange is 20 minutes, or APD overnight... the rest of your time is yours, and in theory you'd have more energy and feel better to actually do what you enjoy.
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I don't know about you guys..........you're really getting me to start thinking more seriously about this whole dialysis thing. I really never thought I'd ever get this close to making a decision.
I had some friends over last night and they were all amazed how I was talking. They couldn't believe that I'm even talking about starting. They can't believe how far I've come!! They were also impressed that I'm starting to get my house ready for the dialysis supplies. They've never even hear me say that I was even "considering" dialysis and now to say I'm almost ready, really surprised them!
I have to give credit to this forum. Discussing dialysis with people who are living it, really helps you (well at least me) realize what its all about. Its so easy for someone who is not in this position to say "you're crazy. I'd start immediately; it can't be that bad".
I was really thinking about the particular comments of "having a machine to keep you alive". I always had a negative look on it but you guys make me realize that I will still have "freedom" being on dialysis. Although I still think (but not as negative) you are still depending on a machine, at least its not 24 hours a day.
The reason I still believe you are living on a machine is because without dialysis, you could not live. I know this comment I'm going to sound stupid to some but I fear that what if you were in a position that I couldn't have access to dialysis for some reason or another for a long period of time, you'd die. I guess that's why I still have a little sense that you need the machine to stay alive.
Thanks everyone for all your patients and understand!
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Goofy my husband does dialysis so he can live his life. He does not let dialysis control his life. He is lucky to be able to do nocturnal home hemo. He hooks up to the machine for 7 hours at a time but he is in bed sleeping during that time!!! Even when he was in center, dialysis was just an inconvenience in his life.
So glad you are starting to come to terms with it and feel better. A lot of it is fear of the unknown. Hubby was very stressed out before he started and therefore put it off as long as he could as well. He says now that the thoughts of having to do dialysis is much worse than actually being on dialysis. Take care. :cuddle;
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Goofy, The comment "I know this comment I'm going to sound stupid to some but I fear that what if you were in a position that I couldn't have access to dialysis for some reason or another for a long period of time, you'd die. I guess that's why I still have a little sense that you need the machine to stay alive."
This has gone through my head."What if I can not get my supplies" "What would happen". I think of natural disasters, hurricans and the like, how do they carry on. Your comment is not stupid it must have gone through all our heads at one time or another.We just have to Alwayes look on the bright side of life duddum.
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It's not a stupid comment at all and it is very valid.
I think the blessing we have though is that at least we have access to this sort of technology that DOES keep us alive. Other folks, like with serious heart conditions and the like, do not have this option.
And luckily, with the vast majority of members being in western countries where dialysis is available to us that we can keep going on (as opposed to some poorer countries who simply cannot afford to provide these services).
I love Del's comment that her husband does dialysis to live his life and not let it control him or his life. That is exactly the way I see it. I don't live for dialysis I dialyse for life.. If I didn't have it yes I wouldn't be here, but I do have it so I can keep annoying people and stay with my family, friends, do my job, watch my football team lose, etc etc....
if dialysis was all I had in life then yes, I might seriously reconsider things - but it's just a small part of it! When I leave I have so much else to think about and concentrate on... and that's why I have my sessions so I can do all that stuff...
and of course I have the hopeful option of a transplant at some point - while I wait for that dialysis keeps my body in a state to accept that gift!!!
When I wake up on non dialysis days I don't think about D. I think about going to work, or what will I do today(if it's a Sunday) and how will I spend my time enjoying my life and getting the most out of it I can. I don't sit there thinking about the next treatment, or even the last.. even if it was a difficult one.. it's in the past, I got through it and time to focus on what's important! :)
the focus is most definitely on life and living it - not sitting in a corner tied to a machine unable to do anything or enjoy life.
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well good for u. I still struggle with 'is this life support' every once in a while ..... But its just sugar water. I take take my daily pills, nightly expensive sugar water, and weekly shot. they are all supportive of my life! im proud of u. Happy to help or brain storm creative solutions or just listen.
girl
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Well Goofy you are one step closer :cuddle; I promise you if i can do dialysis (im the worlds worst , non compliant patient the unit has ever had!) :rofl; but i still go in. I think the nurse find me entertaining as i challenge their brain cells ! :thumbup; Then im sure for you it will be a walk in the park! Just think cup of tea and a sit down !
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Reading these posts reminds me of the news an intern gave me after reviewing Jenna's labs: "In 1 to 5 years she will need dialysis or a kidney transplant.' Huh? WTF? I called my husband (he was home in bed on narcotics recovering from his second back surgery.) I was sobbing. We had no clue. The news was devastating. We spent the next 6 weeks going to 3 different hospitals, urologists, nephrologists - and the answer came back the same. I wish I had found IHD before Jenna started dialysis - it would have been such a comfort to see other patients who were doing ok.
I hope you find the answers you seek Goofy, and that you get the support you need.
:cuddle;
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Goofy, thinking about you today :cuddle; I think I was very fortunate to have found IHD before dialysis. My neph thinks I am one of the most informed patients he has had. Most of my knowledge is from this site and the great members who have shared what they know with me. If others hadn't been so encouraging, I would have dealt with all of this differently. You are very well informed and you and your doctor will make good decisions for you. Let us know how things are going. Sending a hug your way :cuddle;
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I am certainly one who can say the same as Paris..... I learned of my CKD in April of this year and found this site and learned all I can and I just started D a couple of weeks ago..... As always it sounded alot worst than it has been...... I think you will find the same..... and you will also find much suppost here as I have with some people......
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Support? I've received so much more than I expected. I've come such a long way since I found this site. I didn't even want to think about dialysis let alone prepare for it. But through this forum I finally accepted the fact that it will happen and my life is not over.
Although I still have days where I feel like this can't be happening to me. But now they are few and far in between.
I'm telling you that my body is really "goofy". I got an epo shot at my last neph visit and I feel so good! When I went to the doc I was having some signs that it was time to start and I was on the verge of saying OK but then the word no came out of my mouth.
Since I've had the epo shot, I feel like normal again. I don't feel sick or tired now. BUT through the knowledge and support I've gotten from the forum, I really understand that does not mean I'm not "sick".
I have a neph appointment early November and I'll have my blood work done. Even if I feel "ok" but my if my kidney function has declined since the last blood test, I'm finally going to accept it and start dialysis.
Thanks so much for getting me this far!! My husband thanks you too!! He's been after me for a long time to finally admit I have kidney failure.
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:grouphug;
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Sweetie, I think everyone here is just trying to help you so you don't have to go through the HARD stuff that most of us did. Not all of us have a choice as to when to start dialysis... and it's hard and it sucks but it becomes normal and in the end, we're alive!
I know it must be incredibly difficult to have to DECIDE to go on dialysis.. but I promise, it's not as bad as it seems. You're so lucky to be able to do PD. I just don't want you to get into an emergency situation where they automatically put you on Hemo cause they can't wait for your catheter to be pulled out and a PD nurse to come do your exchanges... you don't want that.
Dialysis sucks, it's true.. but you get used to it and most of us live normal lives! Only time I even think about dialysis is when I'm hooking up at night and unhooking in the morning. It takes 10 minutes for each - it's a small price to pay to feel good and be able to have a life!
The sooner you do it, the sooner you get used to it, the sooner you can stop worrying about it and resume your new normal life.
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I know exactly what you mean and what this is like, which is a reason why i am writing my book on dialysis. I will tell you my story quickly. I was 24 when i started dialysis, i had a daughter that was going on 2, trying to finish my college degree. I will tell you, hopefully you have by now, seeing that i am a little late on this, decided to start dialysis. Months earlier from my starting dialysis i knew my creatinine level was 4.0. I left with that and ran and didnt go back for months. At this time I had to do PD 4 times a day (before starting the cycler).
But let me tell you, what i know now, if i knew then, I would of started dialysis when my creatinine leve was at 4.0. I have met two people who started dialysis early (when their creatinine level was 4.0) and they only had to do PD twice a day! Thats nothing. If i could do PD only twice a day, I would not be stuck on the cycler.
You might be tired and not know it because your body gets used to feeling tired. If you choose PD, you can still live as close to a normal life as much as possible, and best of all it helps keeps the residual kidney function! Yeah getting surgery for either a fistula for hemo or a cathater for PD does suck as well. But look at which one is going to be best for you and help you have the best quality of life. If you choose PD, it only takes about 20-30 minutes for an exchange. I went to Sicily and a 3 week road trip across the US doing PD in my car! I know it doesnt seem very appealing but I like it so much better then that hemo!
Lisa
Maybe you could do home hemo at some point since you are married. THere is no tubes sticking out of your body for that. THey have short daily home hemo, and i guess you are on that for a few hours a day. That doesnt seem to interfere with work or sleeping. I also have heard that you dont have as much diet restrictions! THat is because you are cleaning out your blood on a daily basis. Good luck.
My hands are shaking while I'm writing this e-mail. I received the results from my blood test and my kidney function has declined to 6%. I know in my mind what the right thing to do is but I still don’t want to start dialysis. I almost picked up the phone and made an appointment with the surgeon to get my PD access brought out from under my skin, but I just can’t do it.
I don’t know what is wrong with me. I say I’m not in denial, but it sure sounds like I am. I just can’t do it. I just can’t change my life. I don’t want to live on a machine the rest of my life. I was just thinking this morning while I was getting ready for work. I was thinking how horrid it would be to have to do all the dialysis crap in the morning in addition to just normally getting ready.
And just last night when I went to bed, I thought how awful it would be to have to hook myself up every night to a machine. I was thinking about how I fall asleep on the couch and when I wake up, I just go right upstairs to bed. I won’t be able to do that anymore.
Just say I went out on a Saturday and got home at midnight, no matter how tired I was, I’d have to get myself hooked up. Then I’d have to lay in bed until I do the total hours required. Then if I had to do an exchange at work, I would have to be in a sterile room. I know some people say their workplace will accommodate them with a “private” room, but if they can't, I'd have to use the "general" washroom. Would you want someone at work filling their stomach with fluid and then dumping it in the same washroom you use? I know I wouldn’t like it. I believe a lot of people would look at me and treat me like you have some kind of contagious disease.
Although I keep saying I’m not in denial, I still can’t believe this is happening to me. Things like this only happen to other people. I knew my results would not be good because for about 2 weeks now, I’ve had a really strong urine/ammonia taste in my mouth and I know that is not a good sign. And I’ve been having a lot of muscle twitching which is not good either.
My doctor wants to see me tomorrow. I didn't want to tell my husband but he overheard me talking to the doctor. Now my husband is insisting on going with me. I really don't want him to. I don't want to be bombarded by him, the doctor and the nurse telling me what I have to do.
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Goofy, I know this sucks for you I think it sucks too, however, its very necessary. I am only 25 years old and I was first diagnosed with kidney failure when I was 17, I did hemo. for a while and then it went away. I got taken off dialysis and was goon until a couple years ago. I was home from work sick for about 4 days. Suddenly it got so bad that my whole body felt like I had been beaten and I could barely walk to the bathroom, then I started coughing up blood. Thats when I knew something was wrong and I had to go to the emergency room. They siad my kidneys had shut soen again and my lungs were filling with blood. I had to have a blood transfusion and was hopitilized for alomost one month. I did hemodialysis for over a year and then I decided to switch to CAPD. Ive been doing CAPD for almost a year now and just recently I switched to CCPD. Im not sure I like the CCPD, it seems to have a greater risk of infection than CAPD. However, I definately think that CAPD is a great form of dialysis. I agree it does suck having to hook up to the machine everynight no matter how tired you are, but it is saving your life. Now I have to admit that I am young and I do slip up every now and then, you know how young people cant be told nothing...lol. So sometimes if Im extremely tired or if I spend the night away from home I skip a few treatments every now and then, and I also dont always do my midday exchange. Im not by any means reccomending that you skip treatments or anything like that Im simply just saying I have been doing it for a while now and I am fine. Each persons body is different and handles things differently, I have found that for my body I am ok missing a treatment or two here and there if I feel its necessary. I definately think you should not put off getting treatment any longer though, the longer you put it off the worse you are going to feel. It will not fix itself. I was in denial for a while too thinking that it would miraculously go away and it did once, but now its back and its gonn be a part of my life for the rest of my life, I have accepted it and Im dealing with it on my own terms. I hope you make the right decision and start getting treatment as soon as you can.
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Dana Renee, Thanks for you words of encouragement. I’m sorry to hear that you are so young and are on dialysis. I’ve lived 53 years without it and don’t want to do it and you are so young to have that burden.
I still don’t know what to say. I’ve been trying to “lay low” on the board because I feel that I want feed back from people and then I don’t do anything about it. I think right now I’m looking more for people to say you’re sick but you still have time. On the contrary, I know I don’t have much time.
I’m being perfectly honest with everyone here. I flip flop every five minutes in my head. One minute I don’t feel good and I want to pick up the phone and call the doctor. Then I think to myself, if I do call what is going to tell me………he’s going to tell me the only thing that can be done is dialysis. So then I think that if I am not ready to commit, what’s the point of calling, so then I don’t make the call.
I KNOW, I KNOW what I need to do; I just can’t do it right now. I know people will say you’ll never be ready but I really believe that when its time, I will feel right about my decision. I have to be in that “place” in my mind or I will always second judge myself. I’ll always wonder how long I could have gone with out dialysis.
I pray to God each night to please help me; not to cure me but make me realize I need to make the right decision. I truly believe God will let me know when its time. I really didn’t want to share this with anyone but that’s how I really feel. You may say He’s already telling you but you’re just not listening. Trust me, I’m not a kookie religious fanatic, but I do believe in God. I believe we only have so much control over our lives. I also believe things happen for a reason. When I am meant to start dialysis, I will feel it in my heart……….OK now don’t say…….sure you’ll feel it in your heart because your heart will just stop!! Seriously, I still am not at the point where I feel I’m ready.
I understand if people disagree with my “thought process” but I’m really being perfectly honest. I have not told any of my friends or family what I feel deep in my heart and Its seems odd that I can share my deepest feelings with people whom I’ve never even met but I think partly its because you can judge me and I have to keep in consideration that you don’t know “all” of me but my family and friends do so I guess I don’t want them to tell me I’m nuts. With this forum its not like anyone is just giving me their unsolicited opinion, I’m the one asking for help making my decision. So I need to take whatever comes my way.
Or perhaps, I’m waiting to the point where “I” don’t have to make the decision; one day the decision may be made for me. I’m absolutely going out of my mind with this. I know I contradict myself a lot but that’s part of my struggle. And did you notice I always say “I think its because of this or that” then I turn around and say “or maybe, this is why….”. I think (here I go again trying to figure out why I think the way I do) I really don’t know any reasons why I think like I do. It’s because I really don’t know! I’m trying to find the answers but I don’t think I ever will.
I hope I stick to my word about my next blood test which will be next week. If my kidney function has declined even slightly, I will make the decision to finally do it. Thanks so much everyone for being patient and still helping me.
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I'm not a religious fanatic either, but I do agree with your point of view God will guide you in this journey.
I admit, I have spent time asking God to just take me before I am forced to make the decision about starting dialysis. He seems to have other plans for me, and I am supposing he has other plans for you too. You have gotten this far for a reason, and it looks like you are meant to go the distance.
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Goofy- I knew I was going to need dialysis sooner or later. My doctors keept saying "take care of yourself, and you can postpone dialysis" I was in dienal for a long time. I thought I would never need it. But then they said "you're going to need dialysis now." My creatine was 11 or 8 I can't remember. They said unless your creatine went down to 6 within one day, we're going to put the permacath in. They kinda lied to me though. I got my blood tested on a friday and my creatine was really hig. they said if it went down a little by monday, I wouldn't need dialysis. It did go down, but they still started dialysis on me. And I never felt sick. So that didn't help with my danial. I'm 16. I started dialysis when I was 15. You're so lucky you have somewhat of a choice when to start dialysis. And you're lucky that you aren't starting dialysis at a younger age. Like 15 lol. And you're going to do PD right? I didn't even know about that option. Until I joined IHD. From what I hear PD is a cakewalk compared to hemo. It's better to start dialysis sooner than later.
Are you eligable for a transplant? If you are, get on the list asap. I was told I couldn't get on the list, even as inactive, until I started dialysis. psh.
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Or perhaps, I’m waiting to the point where “I” don’t have to make the decision; one day the decision may be made for me.
No. You don't.
I don't think you can quite conceive of just how dreadful you will feel when that time comes. I haven't been there and can't even, but I have *seen* it in my hospital unit. It is not pretty. It is not diginified and it is not something ANYONE wants!!!
I have seen people brought in in acute renal failure. They have no warning. They wake up feeling like death warmed over, and sadly that's pretty much where they are at.
YOU have had the luxury of knowing what is coming and being able to prepare in many ways for it.
You do NOT want to be that person wheeled into ER because you can't breathe and you would rather someone put you out of your misery because it is so bad just so that you can rationalise to yourself "I had to start because the decision was made for me"
I'm sorry but I just can't be any stronger on this point because it scares the living crap out of me.
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When I was 14 I was on PD for the first time - that was in 1982. When I was 15 I got a transplant which lasted until I was 30. One day I went to clinic and told my doc it was "time". I couldn't take feeling so bad any longer. I felt as though I had had a death in the family - and in a way I guess I did because my beloved kidney of 15 yrs had stopped working. I chose to go on PD again. I have a terrible, terrible phobia of needles and told them I would die before going on hemo. So there I was on PD for 10 yrs. My antibodies kept creeping up. My parathyroid stopped working properly. I was retaining water and feeling very unwell, and that's when they broke the news - I needed hemo. A permacath was put in my chest a week later and I've been on home nocturnal hemo ever since. That was 2 yrs. ago - 2 years that I could've been dead but they worked with me and here I am. 12 yrs on dialysis, no transplant in sight. Antibodies are at 100%. I am now 43 and plan to live for another 43. I guess it'll be on hemo, but I'm having the time of my life. I feel amazing. I dialyze 3 nights on, 1 off for 8 hours very slowly. Easy on the body. Closest thing to transplant, and I don't take any of those dangerous drugs. My parathyroid is back to normal. I work full time. I have a high energy dog and a horse, both who need looking after and exercise. I work out. I eat what I want, drink what I want. I don't look sick. I'm totally for this program. Lately the hemo team has been hinting I should get a fistula in the event my line doesn't work or gets infected at some point. I'm working on getting past my fear of needles because I look forward to swimming so much!!! And I can't forget to mention I have the best guy in the world who is there for me all the time!
I know it's easy to say, but please don't think of it as a bad thing. I haven't felt this good in years, and I bet you wish you felt like me!! :clap;
All the best to you. I know you'll decide it's time soon.
Lisa
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When I was 14 I was on PD for the first time - that was in 1982. When I was 15 I got a transplant which lasted until I was 30. One day I went to clinic and told my doc it was "time". I couldn't take feeling so bad any longer. I felt as though I had had a death in the family - and in a way I guess I did because my beloved kidney of 15 yrs had stopped working. I chose to go on PD again. I have a terrible, terrible phobia of needles and told them I would die before going on hemo. So there I was on PD for 10 yrs. My antibodies kept creeping up. My parathyroid stopped working properly. I was retaining water and feeling very unwell, and that's when they broke the news - I needed hemo. A permacath was put in my chest a week later and I've been on home nocturnal hemo ever since. That was 2 yrs. ago - 2 years that I could've been dead but they worked with me and here I am. 12 yrs on dialysis, no transplant in sight. Antibodies are at 100%. I am now 43 and plan to live for another 43. I guess it'll be on hemo, but I'm having the time of my life. I feel amazing. I dialyze 3 nights on, 1 off for 8 hours very slowly. Easy on the body. Closest thing to transplant, and I don't take any of those dangerous drugs. My parathyroid is back to normal. I work full time. I have a high energy dog and a horse, both who need looking after and exercise. I work out. I eat what I want, drink what I want. I don't look sick. I'm totally for this program. Lately the hemo team has been hinting I should get a fistula in the event my line doesn't work or gets infected at some point. I'm working on getting past my fear of needles because I look forward to swimming so much!!! And I can't forget to mention I have the best guy in the world who is there for me all the time!
I know it's easy to say, but please don't think of it as a bad thing. I haven't felt this good in years, and I bet you wish you felt like me!! :clap;
All the best to you. I know you'll decide it's time soon.
Lisa
Come on over and sit in the corner with me. November 2, it will be eleven years straight on dialysis. What a thing to celebrate!
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Hi Goofy,
When my Kidneys went kaput for the 2nd time i left it until i walked in to see my neph and he almost died of fright he told me i looked like death warmed up. I though I felt ok. I was still working doing everything I could. I actually didn't realise how bad I felt until that first week of PD training was over and I started to really feel human again. Now I've done it again. Pd is failing and a month ago my neph gave me the "choice" to go onto heamo- No choice really creatine up to 1100 so 2 weeks later i had my fistula put in.
We all feel for you, it's the hardest but most desperate decision to make. The way i explained it to my husband was that i felt like my body had betrayed me, the one thing i thought i could count on to get me through to the end of my days had let me down. So, I let myself grieve as though for a loved one then i try to find the silver lining before i run head -on into it. My neph gave me a month to think about the change, like you i was scared but i had to decide. so two days after the appointment I sent my neph an email. Pretty much told him what I was afraid of and why about the change but i had decided to go ahead and wanted it asap. He was the one who got me into the surgeon a week and a half later, the surgeon then had me on the list for the following wednesday (5 days after my visit to him).
I think PD is a nice easy start to dialysis. It's a good transition becuase you can do a lot and you can remain independant the whole way through. I have also done bags whilst driving in the car like another lady mentioned. I have also taken my cycler interstate (to melbourne) on a holiday. We load the boot up with solution and go (baxter would help but my hubby is very spontaenous!). I've heard of people camping whilst doing manual eschanges. they take water bottle to wash and lots of hand cleanser and off they go. I've even heard of a company in Canada who have an rv rigged with a Heamo machine that they hire out. So it's not all bad, dialysis itself may not be the ultimate solution but it does improve your quality of life.
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I have a hard time with this thread... cause on the one hand I feel horrible for you, I know it's hard, we all do. But when you say you want someone to MAKE the decision for you, it kind of makes me mad. I'm one of those who didn't know it was happening til it happened and it was AWFUL. You feel terrible and it takes a long time to come back from that, I understand your in denial, but how many people do you need to tell you that it's time? I'm 25 years old.. and I've made the decision to do PD and made my peace with it. life's not over. You're 53... all this time, I thought you were a young person (as in teenager, early 20's), you really have no excuse to be acting naive like this. Life is hard... but it's gonna be even harder if you have a heart attack or a stroke because you want do what needs to be done to help yourself.
I don't mean to sound harsh.. but I stay up at night thinking about you and the decisions your making. And it's hard because I can't make you understand what it's like... I can't convince you that it'll be better. And I don't even know you, it's just frustrating.
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Goofy-
Just want to let you know I still support you in your decision.
Much love
and always in my thoughts
Girl