Close Mobile Navigation

Announcement

Announcement Module
Collapse
No announcement yet.

Not sure where to start so Hi Everyone

Page Title Module
Collapse
X
Conversation Detail Module
Collapse
  • Filter
  • Time
  • Show
Clear All
new posts

  • Not sure where to start so Hi Everyone

    Looked for a welcome or introduction page so will start here and say HI to everyone.
    Spent 20 years sliding into the big D.
    Held on very well with just 5% function the last 6 years. (Neph. wanted me on D but I refused) Never a sick day until I got the flu Feb '12 and BAM.... in the hosptial and dialysis. Started with hemo D then moved to PD and that is the best for me. Has alot of kinks to work out but getting better all the time. I was doing 5 manuals and one overnight dwell. Moved on to the cycler doing 4 and one daytime dwell. Did my first Pet K/v and now do three on the cycler and one daytime dwell. I don't like the long dwells as I feel bloated after 4-5 hours.
    Like reading everyones experiences, suggestions and solutions.

  • #2
    Welcome. Gee, you've learned a lot in a short time, haven't you!? LOL I'm sorry you have to be on dialysis but it's better than the alternative, eh?

    Like you, I gradually fell into dialysis over several years. I was fortunate to be able to plan and ease myself into it.

    Again, Welcome and nice to meet you. FWIW, I have an "about page" on my blog site where I write about dialysis and sometimes just a free exercise in creative writing about events in my non-dialysis life. www.devontexas.workpress.com

    Devon
    Fistula - March 2008
    Began Dialysis - August 2008
    Fistula Revision - Feb 2011

    Dialysis Patient Citizens, Patient Ambassador
    NW14 ESRD Network, Patient Advisory Committee Member
    CDC Infections Control Discussion Panel Member
    National Kidney Foundation Peer-to-Peer Mentor

    Blog: www.DevonTexas.com

    Comment


    • #3
      Hi and welcome Dee Terminid,

      sounds like you are on your way I have no advice for you other than don't take all the posts you read to seriously some are written in stressful times (like some of mime lol) If you have any questions your best sources are Devon & I have faith, they are 2 great people. as for me I have alittle knowldge of this way of living but got alot of it from them. Again welcome and look forward to seeing you post often and I promise I will answer if you have a question or need anothers opinion.

      God Bless

      Donna

      Comment


      • #4
        Thanks for noticing my post. I don;t get on very often and mainly read all the post. Generally I find someone asked the very question I was thinking... so we all go thorugh alot of the very same experiences. I don;t take all the post too seriously as I know people have to vent and just to get it out helps. No one around me want s to hear any thing about Dialysis.... I don;t want to hear it either...LOL.... I have not embraced dialysis. I see it as my enemy, a dark intruder. I will not put the machine in my bedroom. I will not make it a focal point of my life. I don;t even call it dialysis I say I am doing a treatment. Just a few more and I will be done.... It may not seem reasonable but it make me happy.... I sing in the dark too.... not that I will admit I am afraid but singing makes me happy so the dark isn;t so dark....

        Comment


        • #5
          hi, i have a similar story of yours. i was on dialysis for 3 months. didn't want to get on but doctors and everybody else scared me into it. then all theses weird things started happening to me and it made me feel worse when i got off. so i stopped going. the nurses, doctors, family was totally agaist it except for my mother and boyfriend. i was like "whatever" i knew my body and my body said " take me off" and i did. i lasted a whole year before i started getting bad symptoms of the end stage of kd. i was pretty much going to wait it out till i died. i wanted to be happy not dealing with dialysis. i went to a doc apptmt and he told me that i needed dialysis rt away. it took me a couple of hours to get out of my bed and decide i wanted to get it again. so after long hours sitting with my fam...listening to them trying to convince me to go....i went only because i was thinkikng about builidng a life soon with my boyfriend of 3 yrs. so i went to the hospital to get a access( catheter in my shoulder). the docs kept changing thier mind about when they where going to put it in and where...so i changed my mind. it was a confirmation that night when i woke up feeling pain weakness in my legs...like how i felt on dialysis. that remimned me of how terrible i felt. so i definitely where going to tell my doc n the morning i wasnt doing it. that morning, every doc, nurse came in my room trying to get me to change my mind back. this went on for hours...then there was this one doc; jayne littlejohn that came in and unintentionally scared the crap out of me.lol she was askiing questions about symptoms i didnt even tell her i had. she told me things that know one knew. it made me feel like we were close...she knew how i felt, she also semmed like she cared about me. for real. she told me" do u understand the cauntions of this decision? you will die eventually...sooner than you should if you dont do this. i dont think you really do, i think that you are going to go home and think this is going to go away. i think that u are just going to wait, wait until you get worse, till you deteriorate and die" she was rt. no one knew thats exactly what i was going to do. which sounds like a scary journey. i felt sad about it but i was too scared to go along with the process and deal with this for the rest of my life. i was willing to go home, back to where my life was and just live every day to keep me feeling normal. i was in denial and didnt want to believe that i was.
          Now, here i am in dialysis, getting my fix.lol its going ok. decided to go to a different clinic this time. i beleieve they where under dialysing me or doing something wrong at the other i was at a year agao. because when ever i got off, i felt sick...people told me im not suppose to fell sick; im suppose to feel fine. i hate sitting here for 3 hrs on my ***. BORING

          Comment


          • #6
            omg ! i looked at dialysis like that , the 1st time. now i have surrendred and embraced it. i will say it IS hard to embrace this bad boy! lol

            Comment


            • #7
              Hi Determined, sounds like you have a pretty good handle on things. I am particularly interested in your saying that you were on 5% function for 6 years and your doctor wanted you to go on dialysis. My husband's creatinine is 5.6 and the doctor wants him to start. He has no symptons yet and I do not want to start until I know for sure. How did you prolong it at 5%? The doctor thought he would have started 3 years ago. He had a fistula done and because of using little dye they didn't get the whole thing. A year later he had it done again. Again it wasn't enough. This year we did it again. The surgeon said it would be ok. The neph listens and says he loses it at a point and won't know until he uses it. In the meantime his blood work is getting worse. I am wondering if I should try a different doctor. Good luck to you I wish you the very best.
              '

              Comment


              • #8
                Three attempts at a Fistula in the same place and no success? That doesn't sound right for two reasons. After the second time, they should have gone elsewhere to find a good location. I assume the doc was redoing the same location. You weren't specific. If it's three different locations, that's possible but there are problems with your husband's veins. Diabetes, for example, makes the arteries and veins very difficult to use for dialysis. Another reason is the with sonogram, the doc can "see" the veins and arteries and shouldn't have to speculate on the location. A sonogram, done properly should show him where the sweet spots are and he shouldn't have to cut so much. If you don't want to go somewhere else, ask the doc straight-up "Why?" His explanation should be a damn good one or I would find a new vascular surgeon. For every one good surgeon there are nine not so good ones and one really bad one.

                Devon
                Fistula - March 2008
                Began Dialysis - August 2008
                Fistula Revision - Feb 2011

                Dialysis Patient Citizens, Patient Ambassador
                NW14 ESRD Network, Patient Advisory Committee Member
                CDC Infections Control Discussion Panel Member
                National Kidney Foundation Peer-to-Peer Mentor

                Blog: www.DevonTexas.com

                Comment


                • #9
                  Hi. I have been dealing with CKD for the last year or so. I didn't want to even THINK about Dialysis. I got an AV fistula on my doc's advice but never planned
                  On using it. I just went to my neph today and he said its time to start. I haven't yet but I felt the same way you're feeling. It's like I'm mourning for my old life
                  And coming to terms with all this. Thanks for listening. Great post. -Bryan

                  Comment


                  • #10
                    hey there ya'll. i'm a newbie also. been on dialysis since oct 2012. not sure where to start. to be frank i am scared and sometimes i show it. how do you cope with thia?

                    Comment


                    • #11
                      I've heard/learned/been told, to wait as long as possible before going on dialysis. I don't know if that's a good recommendation, but my husband waited for 20 years before he HAD to go on dialysis. Everyone is different I suppose, especially the doctors

                      Comment


                      • #12
                        Yeah my nephrologist always tells me that too.He says the longer it's put off the better.My kidney function varies though like now its 26%,Its scares me cause at one point last year I was 17%.And I know a person starts when they are 15% and I dont even have any type of access.

                        Comment


                        • #13
                          My advice is to get your access put in now. Be ready so you don't have to get a catheter. If you're really lucky & don't end up needing dialysis, the access goes unused. Better safe & ready than sorry

                          Comment


                          • #14
                            My husband a long time diabetic- got pneumonia and now we are on week 2 of dialysis- we did get the fistula put in while in hospital- he is having a hard time dealing with all this and so finding out - reciepes- etc are left up to me and there is only us- our son- but I don't want to put a lot on him- he has his own life to deal with which is no picnic- anyway I am looking for answers and support- he is also a VERY picky eater- I am printing off and getting my hands on any he might like. Started throwing up- so when I asked what was up- his reply- I think it is in my head! We are looking to do home D- as soon as his site is ready- he has been out of the hospital for 2 weeks now and I can't even get him to shower!! He is 57 I am 62- I stress and it all ends up in my gut which I have had several surgeries and the last in 2011 on the table with 2 surgeons for 9 hours and now put together with pig mesh- the doc said we can't do this again she won't make it- so now I am in stress about me as well- I can't take control of his life without him helping- and yes I told him it has to be both of us- but that seemed to go out one ear - any suggestions I would greatly appreciate- this is scary for us both- but he doesn't see it that way. thanks for letting me vent a bit.

                            Comment


                            • #15
                              Hi everyone,
                              Hope you all are fine.I am newbie in this forum.My name is Morkal.I am working as a manager in a small industry.I join this forum to share some issues that i have.Hope for a nice time in this forum.
                              http://www.yellowpages.com.au/qld/ka...6-listing.html
                              Last edited by Morkal85; 10-30-2013, 02:55 AM.

                              Comment

                              Back to Top
                              Working...
                              X