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I was just wondering.....Where are all the PD patients??
I'd love to read some of the stories peole have about dealing with PD, (or hamo, for that fact) and what made them choose PD over Haemo, or vise versa. I live out in the counrty, and the only people I come accross are those doing haemo at the local hospital dialysis centre, and/or who are waiting to see the specialist the same day I have appointment. Surely there are some people out there...hopefully reading this.... who would be prepared to talk a little about how they cope with dialysis.
I, myself am on PD. CAPD to be exact. I started in April 2009, and am continuing to do my dialysis daily from the comfort of my own home. Most of the time things run occurding to plan. but I have days when things are 100%. And many days wen i don' feel 100% physially and/or emotionally. Unfortnately I live too far away from my PD centre, and am unable to drop in for assistance if or when I get into trouble. However help is only ever a phone call away. My PD nurses are terrific, and are only to happy to help in any way they can. Which is always a great relief for me, although it would be great if there was someone closer I could physically go to for help, especially when at times the symptoms or the look of my exit site is a little hard to explain in words.
I choose CAPD as I was able to do it for myself and from the comfort of my own home. Plus there was no needles involved....man, do i hate those needles!!! it looks like in the near future I may have to swap to APD, which would free up my days a little more. I guess for me...any thing is better than the haemo, since i can't stand needles. but hey, perhaps it's not s bad as i think it is. We all know how fear of the unknown, can stop us from attempting many things.
So does anyone have any comments they'd like to share as to why they have choosen their particular form of dialysis??? I can't wait to see what other people think.
yours truly,
MissyD
Hi MissyD,
It's great to hear from someone else who also sometimes think we ara all alone in this. Well, you'll be glad to know there are quite a few of us who are on CAPD ie namely me, as one of them. I've been on CAPD for just over a year with its many up and downs. I have learn to tolerate although I can't say I'll ever get used to it. I have recently returned home after 3 and a half weeks interstate visiting family and friends so I can now say travelling is definitely very possible with CAPD. The support I got was tremendous. The healthcare team organised the transportation of all the fluids and provided a special case for my machine which I took with me on the plane. Prior to going, I did all my bloodtests and EPO etc so I did not have to worry about them when I was away. I even train up for a day to use the freeline system in case my machine did not arrive intact. So, you can see, I was pretty anxious! It was all worthwhile. I had a fabulous time spending Christmas with family and managed to catch up with several friends and feeling quite normal! The most difficult part of this experience was taking the courage to make the decision to go - flying for 5 hours with two children and a machine was quite daunting but I think my initial apprehension has made this journey all so much more special. I discovered an inner courage which I hope will flow on to many others. All the best for 2010 and happy CAPDing to you.
Regards,
Laikin
Hi Laikin,
It was great to hear from you. Congrat's n working up the courage to go on your trip (not an easy thing when there is s much to take witrh you regarding dialysis!) I am still doing manual exchanges throughout the day, so if I go away for the day i have lots of bits and pieces to take with me. but it's better than being stuck at home. i still haven't worked up the cousge, or saved th money to take a long holiday yet, may be oneday soon!
It would seem that I may need to go on the night cycler soon, as my dialysis is't working too greatly. I have cats inside, and have been told they can not be in the room while I have the machine in there. Hmmm, that wont go own too well with them. Some how I'll have to train them not to be in my room then.....not such an easty task. Starting dialysis in the first place was a scary thing to do. I'm getting use to it, but i don't think i'll ever say i enjoy it. But now the thought of having to re-train, and start something new scares the hell out of me. (Fear of the unknown i guess) i had hoped things would have got easier, but i am afraid that's just not the case.
Support from the PD Nurses is great, so that helps, even though they are about 400km away. But there is little or no support from my family and friends, which can make things hard. So most of the time it feels as thought I am going through all this on my own. The hardest part is knowing that no matter what happens, i can't give up. Life, althought it is often a struggle , is a precious thing, and so worth fighting for.
Thanks for your reply, and good luck with your dialysis,
Yours greatfully,