"To be or not to be on dialysis, that is the question." (Not Hamlet, its Hakki)

[dwcrawford]

At the risk of being deionized, I think that the subject is so truly personal and individual.  To dialysis and how or not to, to try for a donated kidney or to knock someone over the head and steal one, it all depends on who you are.  Home or center! Etc.

What are you values?  What can you live with or not accept as part of your life?  Do you  want to subject a spouse or a child to a life time of caregiving?  How old are you and how long do you expect to live?  What is your general health in addition to kidney disease?  I mean you really need to know who you are before you can make any of those decisions.  Once you've made it, however, you need to put everything you can muster into the process.  Process it through your religions or your core beliefs and (pretend) to be positive about what you are doing even though every inch of your being wants to break down in tears or hit walls or even hit people.  Yea, if what you chose is absolutely wrong for you, then change.  But do it thoughtfully and with not false hopes.

Yea,  sometime I know why you people don't like me!!!  I evern bored myself at times.

[Melissa]

Richardmel - I like the points you made...

Hi Brightkismet....I noticed is has been a while since your post and am wondering what you are leaning towards now? 
Although the majority (probably the smart majority!) chose option B, I actually waited until I felt pretty terrible...my function was about 10%, maybe a little less, when I started.  It was definitely risky to wait that long because I think I could have ended up in the hospital, but I had similar concerns to yours and just didn't want life to change.  I do not regret waiting, but I was very lucky.
You say you're feeling unfit.....I think that might be a good indicator that your body needs the dialysis.  Like someone said on here....I did not realized how poorly I was feeling until I wasn't feeling that way anymore.
I also peed a ton, drank a ton of water, and I will be honest, I miss it so much!  I actually dream about drinking cold water.  It is hard to get used peeing less, or not at all, and the fluid restrictions, but I did get used to it, and the trade off is feeling better a lot of the time.
Oh, another thing I wanted to share - a fellow patient at my old unit in CA has been on dialysis for 30 years next month!  She has had two unsuccessful transplants, flipped back and forth between hemo and PD a few times and it is pretty amazing how well she has done.  She still works and everything.  So I think she would say to do what you want to do and try not to worry about the risks of one treatment vs. another too much.  The biggest risk is not doing anything, right?
Good luck!  Looking forward to hearing more about your journey...

[RichardMEL]

Richardmel - I like the points you made...

Thanks! I like that you like my points!! 

I also peed a ton, drank a ton of water, and I will be honest, I miss it so much!  I actually dream about drinking cold water.  It is hard to get used peeing less, or not at all, and the fluid restrictions, but I did get used to it, and the trade off is feeling better a lot of the time.

Ah you must be my partial soul mate (what's that song about California Girls?  )... I too used to drink at LEAST two litres of cold water from my fridge a day (plus soft drinks, tea, coffee etc) and pee a lot. I too sometimes dream of just big glasses of ice cold water and being able to drink it all down without a care!! Yeah some people would just not understand that.. but we do!!!!

The fluid restrictions have been the most difficult of all to get used to, but as you say the benefit is feeling better and general health for me (as in no fluid building up on the lungs or making more work for the heart). As I tend to think of it: "no pain, no gain" - so if/when I can return to a lifestyle of drinking entire bottles of chilled water it will be that much sweeter for all I have gone through to get there in the best shape i can

[Melissa]

Richardmel - aah you totally get it!!
Have a good day!   I am off to drink my final cup of water for the day - can not wait!

[dkerr]

I have PKD and started in December 08.  I was going in center 3 days a week and about a month ago went into training for NxStage at home 5 days a week.  I feel so much better.  When I first started in center, I noticed the change in how I felt.  I didn't realize how bad I as feeling, and now that I'm on NxStage, I feel a significant difference between how I felt in center and now.  I feel like I've got my life back.

[koutsounel]

PD as an option only lasts a maximum of 5 years, and this is without significant infections - the peritoneum looses its ability to dialyse with time.

I haven't been told 5 years.  Actually I haven't been told any years.  Is that really true?  Anyone else out there been doing PD for long?  Kickstart how long did you do it?

This is what we have been told. One of the surgeons also told us the same. However my son hasn't had his second birthday yet... I don't know if it is different for adults.