I don't know what to ask...

[MooseMom]

I am thinking that the time is coming that I may have to start dialysis.  I don't know when it will be, but I want to be as prepared as I can be.  The more reading I do, the more confused I become.  I panic at the thought of it all, and the only thing that I am fairly sure about is that I panic the most at the idea of being in a clinic every other day for all of those hours.  My mother is on in-clinic HD (for an entirely different type of kidney problem), and I see how hard it is on her.  So I am thinking that PD may be the way to go.

I am terrified.

I have ordered the book "Dialysis without Fear"; have any of you heard of it or have actually read it?

I'd like to hear some "tricks of the trade" from y'all.  What has been the hardest thing about PD?  What scared you the most at first yet became easy as time went by?  What sort of "coping mechanisms" do y'all employ?  I've heard that you tend to gain wait on PD...is that true, and if it is, what can you do to keep your weight down?  Funny thing is that I feel OK; I walk 3 miles a day to keep myself fit...will I still be able to do that on PD?  Will I feel well enough?

I am so confused and so frightened that I don't even know what questions to ask, so please just give me any practical advice that pops into your heads.

Thank you all for your time.

(I mean, OMG, there are different kinds of TAPE?  And the catheter is THAT LONG? )

[MooseMom]

And I apologize for being such a weenie...

[Adam_W]

Just my opinion, but I would try to STAY AWAY from in-centre hemo, at least long-term. I hated it for a number of reasons, the #1 reason being lack of control. Also, the four hours, three times/wk "one size fits all" dialysis just doesn't cut it. PD or some kind of home hemo would be best (again, just my opinion). What ever type of treatment you choose, we're here for you  .

Adam

[KT0930]

The catheter was that long before they changed the extension. It is now to my knees or so, and keeping it looped with tape makes it very easy to deal with (sorry, didn't mean to cause a panic with that!). The different types of tape are just the different types of medical tape that you can buy at any CVS or Walgreen's, not to worry!

The hardest thing about PD for me was when I first started, I was doing manual exchanges four times day, and on the weekends, my husband and I liked to go to local craft festivals and things like that. I just couldn't do them because he was always concerned about how far away we'd have to park, and getting back to the car to do the exchages and keeping the fluid warm while we were out of the car. Now I do the cycler, and I only do exchanges at night, so my days are completely free. I love the cycler! Keep in mind, some people still have to do one exchange during the day while using the cycler, but it's still easier than four!

Yes, I've gained weight on PD (I needed to gain some, though) for two main reasons: 1)the solution that is used is a sugar solution, so you're getting extra calories through that. I think I heard that it's around 500 calories a week? 2)the diet that you're allowed (and this is true of hemo and PD) is very restrictive and relies a lot on white breads and pastas. If you like salads, that'll help keep some of the weight off because instead of pasta, you can have a salad as your main course.

Hope this helps a little bit, and please ask any questions you need to, either here in the forums or through PM - we're here to help and support each other.

[Laurie]

The first time I was on dialysis, I did in-center Hemo. For me it wasn't that bad. The hardest thing for me about in-center Hemo was seeing all the other people and how much most of them were suffering.
This time, my doctor really wanted me to try PD, so I decided to give it a try. I had my first day of PD training on Friday and I think I'm gonna like it.

One thing that sold me on PD was not having to deal with needle sticks and fewer diet restrictions. One thing I don't like about PD is you have to do it everyday.

I wish you the best of luck in finding the treatment option that is right for you 

[angela515]

Good luck whatever you decide, I just wanted to say, it's ok to be scared and your definately not a weenie 

[MooseMom]

Thanks for that, Adam.  

I've asked myself a number of times what it is about dialysis that sends me into a panic.  I seem to always come up with the same answer, that being the lack of control, the feeling of being trapped and the very idea of having to show up at a clinic three times a week for hours at a time.  When I go to Texas to visit my mom, I take her to dialysis, and I've seen the inside of those clinics.  My mom is treated very well, mind you, but I just hate being there.  I am relatively young, relatively healthy and relatively intelligent, so I figure I could do PD.  I also figure PD is easier to customize, like you suggested.

I want to make the right choice for myself, but I'm just not sure what that is, and I fear that I won't know until I've actually made that choice, made that commitment...

And thanks for your post, KT.  I'm a bit short in height, so any excess weight gain would not be good.  I am already on a restricted diet, so I know what you mean about white bread and pasta.  Does exercise help keep off extra weight, or is weight gain inevitable?

I've been thinking about using a cycler...  I guess every method has its pros and cons.  I suppose you have to decide just what you are willing to put up with!

I've been reading your posts, Laurie...they've been very informative.  I've already learned a lot from you!

Yeah, angela, I AM a bit of a weenie...do they have dialysis for that?  LOL

[Sluff]

Well Moosemom join the weenie club because I'm scared as heck at the thought of eventually being on dialysis. The funny thing is I've never been afraid of needles (don't know about that size tho..) but for me it's the loss of freedoms I will undoubtedly encounter from diet and fluid restrictions to the commitment of time required to dialysize.

[angela515]

Yeah, angela, I AM a bit of a weenie...do they have dialysis for that?  LOL

Sure... 

[MooseMom]

Well Moosemom join the weenie club because I'm scared as heck at the thought of eventually being on dialysis. The funny thing is I've never been afraid of needles (don't know about that size tho..) but for me it's the loss of freedoms I will undoubtedly encounter from diet and fluid restrictions to the commitment of time required to dialysize.

Exactly.  I think to myself, "Many other people have had these same fears but have obviously conquered them, and I should be able to do the same."  And I feel better for a minute or two...and then I feel overwhelmed again.

My husband and I went for a walk today, and I was bitten by some bug.  It really hurt, but it's not like I was in some ungodly pain.  But I just stood there and sobbed; when you are trying to deal with something this huge, it takes up all of your emotional reserves, and then something teeny tiny that goes wrong just becomes the final straw, kwim?

I suppose we should just feel grateful that dialysis is available; people 100 years ago just died.  I'm not feeling too grateful at the moment, though.

[goofynina]

Aww Moosemom,    It will be ok, you will learn to cope with it.   When i started i was on Hemo, (hated every second of every day) even my days off, but on PD, you have much more freedom and a tiny bit less restrictions.   You have come to the right place for support, encouragement and advice, all you need to do is provide the questions (if they are not already here) but if you cant find them, just feel free to ask, we will help you any way we can    Remember, you are not alone, you have us  and we all know what you are feeling and going through so dont hesitate to come often and post your thoughts, your feelings, your fears or whatever it may be at that moment, we are here for you my friend, and we care 

[KT0930]

Glad I could help, MM. I'm also a bit short, so the extra weight on top of what I needed is pretty obvious (at least to me). I would think that exercise would help stave off some of the excess weight.  Here's a link to an exercise support thread that you might be interested in: http://ihatedialysis.com/forum/index.php?topic=3027.0 I really can't help you other than that, though. Between dialysis, full-time work & an almost-9-year-old boy who has ADHD, I just don't have the energy to do more than a VERY short walk after dinner occasionally.

Don't worry about being a weenie, what you're feeling is very normal and expected. Read lots here and learn everything you can about your options and about ESRD in general, and you'll feel much more prepared and won't have as many surprises along the way.

[kitkatz]

Stay away fromt he idea you are a weenie. Good God you are going to go on dialysis soon. Anyone on dialysis or contemplating it is not be a weenie.