New to Dialysis HELP

[Kermit]

Hi
I"m Kermit and just found out I am in stage 4 of kidney failure.  Hopefully I have about 9 months before I start Dialysis.
My doctor want to do the Arteriovenous Fistula now so I will be ready when I need it.  MY 2 daughters (RN's) say I would be better off with Peritoneal Dialysis.
I would like to hear from both. I don't like the idea of every night with the CAPD but my daughters say you get really sick with the hemodialysis. 
I would like to hear how it has effected you as a user.
I waited to long with my heart and now I have a difibulator and the RCA is totally ecluded, so I really don't want to make another big mistake.
Appreciate any information anyone is willing to give.

Kermit

[Len]

Kermit I did over 4 years  at the clinic  using a fistula  doing  three   four hour runs a week.  most find that their bagged  after a run and thats the way I felt .  now I am doing six hour runs  six times a week on home hemo  and never feel bagged  after a run    the way I see it  the more dialysis you get the better it is for you . and your free to eat and drink more of what you want  that way also

[kitkatz]

I have been in clinic for seven and a half years now on hemo. It is not as bad as we may sound like it is.  Truthfully I may complain about it, but I feel pretty good most days I leave the clinic.  There are some days where I am run down and draggy, but mostly it is okay.  I am tired most of the time, but after awhile you get used to the feeling and can get up and move on in spite of the feeling.  I think stying active in whatever it is you like to do helps a lot.  Make dialysis a PART of your life not ALL of your life. Someone once wrote dialyze to live not live to dialyze.  If you let it take over your life it will.

Katherine

[anja]

Hello Kermit,  Sorry to hear you are in stage 4, but you will have a while to get accustomed to the idea and become more prepared.  The more you read here the better informed you will be to make your decision.  I have been on PD for a year and have been happy in the decision.  My father is on Hemo.  and he has many more difficulties than I.  I enjoy being on my own schedule and being hooked up at night on the cycler lets me sleep through most of the treatment.  I have only had one instance of peritonitis and that was when they placed my catheter.    I have a liberal diet and do not restrict my fluids.  My labs are wonderful and I only have to go to the center once a month to have them drawn.   I do require Epo injections every other week, you have your own nurses to assist you with that, how lucky can you get??!!  I go to my computer while hooked up, or disconnect after the first drain and fill and go watch television or whatever I wish.  My life does not revolve around the therapy.  I feel well and am able to do anything I wish (except swimming, haven't ventured into the water except to shower...)  That brings up another difference, I can shower, my dad cannot, for he has a chest cath.  I suppose the day may come when I will need to switch to hemodialysis, but I am hoping that will be years and years in the future.  I am so very thankful for PD and this great board that helped me to make that decision~ for my nephrologist did not even suggest it, I did my own research, and also found a surgeon that had placed many catheters and mine has worked wonderfully from the start.  I believe your daughters want the best for you but the ultimate decision is yours alone.  Best of luck and let us hear from you,  Anja

[Bajanne]

Welcome to our site, Kermit!  I am glad that you found us.  I am sorry that I can't add much to this particular debate since the only type of dialysis available in my country is HD, which I started last year September.  All I can say is that I certainly feel much better than I felt before I started!
As you can see, there are many who are using all the various kinds and who can share their experiences with you.
Keep reading, keep posting.  There is a whole caring community here to help you on your way as you start this new challenge in your life.

[Kermit]

It sure is good to hear from someone who is there now. and knowing you can still have a pretty reasonable life even if you are on dialysis. On PD are the tubes long enough to walk around or are you using a machine for the night or doing the gravity drip? I probable used the wrong words but you should get what I am after. All this is so new I'm not for sure what to ask?  Thank you very much for the information I have recieved.      Kermit

[goofynina]

Hey Kermit,  Welcome aboard my friend.... Well, it depends on how far you need to go,  they do offer a 12' extension line that you need to connect if you want to have a little extra walking space.  I was on Hemo for 3 years and switching over to PD was the best thing i've ever done.    Ask ANYTHING,  believe me,  you will get answered and dont be afraid to ask,  that is how we learn more about this disease.  I come here several times a day and i learn something new everytime cuz someone asked something i never thought of.   You will see how awesome this site is when you feel the warmth and sincerety of others trying to help you. IT'S AWESOME... So sit back, relax, and read read read and ask ask ask,  we are here for you....

[Kermit]

Goofynina
HOw long have you been on PD? How hard is it to travel? Is the system also protable and does it run off of a battery also?  When the abdomial cavity is filling up is there any pain and how big does your stomach get? As far as pain where and how much?  You may be sorry you said to ask questions.
Did you get sick or feel bad when you were on Hemo? How long is the tube from you abdomin and how big? IS it hard to take care of?
I know this is alot of questions, but I know nothing and this is the only way I can find out.  I really appreciate any information you can give me.
Thanks
Kermit

[goofynina]

MMkay,  lets see,   I have been on PD since the end of May, that is when i started my training,  i got my catheter placed on April 13th, (takes a couple of weeks to heal)   Yes,  it is portable,  although i havent traveled YET,  they gave me a carrying case that it fits in nice and snug,  because there is so many supplies,  you can call baxter,  tell them where your going,  when your going, how long your going to be there and they will ship the amount of supplies you need to the address your going to be at.   I was told i was a special case, lol,  i had alot of difficulty with my exchanges (when i was doing it manually)  come to find out, i am considered a high transporter,  that is when my body starts absorbing the solution within a couple of hours,  it is normally supposed to dwell for 4 hours, but after 2, my body was reabsorbing and i was becoming swollen, sooo, they did the next best thing, which was the cycler, which i am so glad they did cuz i get on when i want to at night and 10 hours later i am done.  so if i hook up at 9pm at 7am, i am finished with my dialysing and i can go about my day,  most times i hook up later so i get off a little later, which is cool cuz i sleep in.  Well, I am not sure if you seen my photo but i am already a large woman    but i can still feel the difference,   i have a friend in Australia who is doing the same thing and she isnt as large as me, she has said that it took her some time to get used to it and now she doesnt feel a thing.  It really is a great way to dialyse.  You really have to check the lines and make sure there is no air and you should be fine, BUT, if you get air in you,  that can be painful,  there are certain ways to get it out but it may take a little time.  When i was on Hemo,  i was always getting infiltrated, when they either poke threw my fistula and it bleeds in my arm,  that is painful,  the swelling and the bruising was awful,  I always had a hard time trying to control my fluids,  i would gain so much i would have to stay longer than all the other people to get it off.  I would always end up cramping really bad in my legs,  that is painful also,  with tubes sticking out of your arm attached to needles, there is not too much you can do or anywhere you can go,  cant walk it off,  I was lucky that some of the techs were kind enough to massage my legs but that wasnt all the time,  then there are times when you crash,  your blood pressure drops so low and you are about to faint,  you feel hot, cold, flushed, they have to load you up with the saline (which they were trying to take off, they have to put back in you)  When i would leave Hemo, i would say 8 times out of 10 i wasn't feeling too good,  well, i would feel ok, just not good, and i have to admit, sometimes i would walk out, or they'd have to take me out in a wheelchair or they would have to walk me out,  it took awhile (maybe an hour or so) to get myself together and my body actually moving when i wanted it to, lol,,,   the tube that hangs from the left side of my belly button is about 8" long,  i was very worried about that but it has become a part of me and it doesnt bother me (or my hubby) at all,  (just keep it clean and dress it and it should be just fine)  Not hard to take care of,  i just tape it to my skin so it doesnt move around so much, no one even knows i have it.  Well, i hope this information helped you at all.  Oh one other thing,  the diet and the fluid arent AS restricted as when on Hemo because of the fact that you are dialysing on a daily basis and you can clean your blood sooner than on Hemo,  on Hemo,  it (all the toxins)  dwell in your body until you go to your next treatment.  So,  I think i have answered your questions and i am ready for anymore you'd like to know,  thanks,  i amazed myself for actually being able to answer them all and i have only been on PD just a little while.  But thanks to this forum, i have gotten many answers to my questions and even answers i didnt even ask yet (does that make sense) lol,   So just remember, I (we) are all here for you for all your questions, if i cant answer them,  believe me, someone else can and they will,       Hope to hear from you soon,   

Goofynina

[Epoman]

Ok, guys continue the questions and answers in the proper section, this is for introductions only. By the way Kermit welcome to the site.

- Epoman
Owner/Admin

By the way WELCOME kermit, I hope you stick around and make this site great.

[goofynina]

Hi Epoman,  Quick question for ya,   If when a person is introducing themselves in the introduction thread and they ask us questions,  how will they know where to go for the answers to their questions?  And where do we put the answers at?  I've always just replied to the question after they ask,  have i been doing it wrong all along?   

[Epoman]

Hi Epoman,  Quick question for ya,   If when a person is introducing themselves in the introduction thread and they ask us questions,  how will they know where to go for the answers to their questions?  And where do we put the answers at?  I've always just replied to the question after they ask,  have i been doing it wrong all along?   

NO everything is fine, they can a ask a question or two here to get them started with answers. But they should ask all future questions in a NEW thread that they will make in the proper section. The reason I don't want alot of questions asked here is that alot of people don't read the "introduce yourself" section, and if they ask all of their questions here and get replies here, then others may not benefit from the answers. This site is all about providing answers and support.  A couple questions is fine, but after that, simply ask the new member to start a new thread in the proper section and you will answer them there. After all this is the Introduce yourself section, and I wish new members would do just that, introduce themselves and NOT ask any questions. I will try to add wording to the titles to remind new members this section is for introducing themselves ONLY. Thanks goofynina.

- Epoman

[goofynina]

Gotcha!  very well explained El Capitan......