I Can't Believe Its Really Happening to Me

[LightLizard]

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

[Brightsky69]

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. 

[dwcrawford]

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)... 

[Jean]

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.

[pamster42000]

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.

   

[RichardMEL]

Well said Pam, and Dan makes a good point (and not rude at all mate!  ) - 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.

[dwcrawford]

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.

[Goofy]

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!

[Zach]

 

[glitter]

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. 

[dwcrawford]

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.

[lizabee]

So sorry to hear about this, take care of yourself!

[pamster42000]

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.

[Des]

Goofy,

.

Thinking of you...
Hugs.

[jpearce]

 I don 't get it. If you can fix it why leave it broke?

[RichardMEL]

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!!

[Sunny]

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.

[girliekick]

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.

  Flip a coin 
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.  I get it, I really do. I get it, I really do. 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

[Goofy]

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.

[KICKSTART]

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  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 !  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 ! 

[Hanify]

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.

[RichardMEL]

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 ( ) ... 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.

[Goofy]

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!

[del]

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. 

[billybags]

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.