I Can't Believe Its Really Happening to Me

[girliekick]

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

[RightSide]

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.

[Goofy]

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.

[Stoday]

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".

[KICKSTART]

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 !

[kristina]

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.

[sico]

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.

[RichardMEL]

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.

[LightLizard]

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!
 

[RichardMEL]

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.

[Bajanne]

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,.

[Meinuk]

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: 

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.

[The Wife]

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.   

[Goofy]

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!"

[Goofy]

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. 

[Goofy]

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!

[Goofy]

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!!

[Bajanne]

Again, I can't thank you enough for your support!!

You are so welcome!    That is exactly what we are here for.

[del]

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!!!   

[kidneydoc]

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.

[bette1]

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

[KICKSTART]

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.

[Hanify]

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.

[billybags]

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.

[Ken Shelmerdine]

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