I Can't Believe Its Really Happening to Me

[Goofy]

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.

[glitter]

I'm sorry your so stressed out, and I hope you can find some peace to do the things you need to. 

[RightSide]

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.

[del]

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!!

[willowtreewren]

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

[tyefly]

   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.....

[dh514]

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.

[RichardMEL]

Aleta has it nailed! You so rock (why are the awesome women all taken?  )

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...

 

[kitkatz]

I agree with RicardMEl.  You need to take care of yourself. YOU are the only YOU we have here!

[Rerun]

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. 

                                       

[billybags]

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.

[Hanify]

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.

[jpearce]

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

[KICKSTART]

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 !

[Des]

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....... 

[The Wife]

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. 






 

[Ang]

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

[sico]

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.

[pamster42000]

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.

[pamster42000]

Also embrace all the support you can recieve from family and friends. Don't try going through this journey by yourself.

[Wattle]

   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. 

[Melissa]

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!

[LightLizard]

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....

 

[KICKSTART]

...or shes just burying her head in the sand ? Either way i hope its not illness keeping her away .

[LightLizard]

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...