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  • Another newbie to PD

    The time has come....my kidneys are tired and can't go on anymore. Hence it is time for PD. I am looking forward to meeting other people who are going through this same journey, to learn, get questions answered and grow my network of support.
    .....Let the adventures begin...

  • #2
    Originally posted by PJones1921 View Post
    The time has come....my kidneys are tired and can't go on anymore. Hence it is time for PD. I am looking forward to meeting other people who are going through this same journey, to learn, get questions answered and grow my network of support.
    .....Let the adventures begin...
    Errr....that was a bit dramatic and sappy....I blame it on the memory issues due to my failing kidneys. I am at GFR 8, stage 5 and feeling every bit of it. I feel like I am so toxic-I am probably leaking radiation. I have all the classic symptoms of ESRD. It's probably a good thing I will be starting PD very soon, as in a few weeks. My body is telling me yes I am ready, but my mind is sooo...not ready. I am just curious what symptoms people experienced just before starting dialysis? And are these symptoms relieved once dialysis starts? If so, how soon?

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    • #3
      PJones, I hear your reluctance and frustration. I was GFR 5 and had dialysis for acute kidney failure. Over a period of several months, the kidneys improved to GFR 18, but now the nephrologist says thats not going to continue and is preparing me for permanent dialysis and/or transplant. I'm looking into the pros and cons of PD and HD. What are your thoughts on that? You asked about symptoms -- my major symptoms were EXTREME fatigue (unable to walk from my car into the doctor's office without stopping to rest) and shortness of breath. I wish you well and hope to hear more from you.

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      • #4
        Originally posted by sewla View Post
        PJones, I hear your reluctance and frustration. I was GFR 5 and had dialysis for acute kidney failure. Over a period of several months, the kidneys improved to GFR 18, but now the nephrologist says thats not going to continue and is preparing me for permanent dialysis and/or transplant. I'm looking into the pros and cons of PD and HD. What are your thoughts on that? You asked about symptoms -- my major symptoms were EXTREME fatigue (unable to walk from my car into the doctor's office without stopping to rest) and shortness of breath. I wish you well and hope to hear more from you.
        Bummer, I tried to maintain a GFR of 13, but couldn't - my score just keep going down. Did your neph, give you any time frame? I am still quite new to this world. I have decided to go with PD, as I understand it offers much more flexibility. I work full time and plan on continuing to do so. I don't know how much time home hemo takes vs. hemo at a clinic??? Perhaps someone with a little more experience can help answer your question. I have fatigue too, I just feel tired all the time and like I can never get enough sleep, even though I get 7- 8 hrs at least on avg. and it seems like a restful sleep. I am on a list for a transplant...the avg. wait time in my area is 2-4 yrs. I am curious how did your kidneys go from a GFR of 5-18?

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        • #5
          I have already seen a TOPs nurse who gave me all the options and counseling for dialysis. I am surprised you have not
          contacted your hospital to see if they have meetings on this information. Our hospital did and when I asked the doctor
          if I should be going to it, he said he would like me to have the counseling done at his office. My husband and I went and she
          gave us an hour class with time for questions. She called me a month ago to set up a time for me to go in and observe
          both types of PD and HD. Since I am at 16/17 GFR and losing about 6 % each six months my doctor seems to want me
          to be prepared. I have dropped 10% in a six month period before so this next visit I will be making my choice. I believe my
          doctor will put me on it soon after I hit the 10 GFR, I have poly cystic kidneys which are growing instead of getting smaller.
          They are pressing on other organ inside of me. I want to do PD but this may not be good since I will have to have 2 litters of
          PD fluid inside me to clean them out. I was told there may not be enough room inside with causing me to be sick all the time. It is bad enough being tired. I have done a lot of reading on web sites and some doctors want to start close to 10 while the
          kidney's are still working and others believe waiting until 5 is better. I am not sure what makes the difference accept maybe water retention,
          other health issues, and availability of a dialysis center working with people. kidneyschool.org is a good place to read about
          regular kidney problems. Hope this helped a little.

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          • #6
            Hi everyone my name is Howie. This Thursday I am having the surgery to implant a PD cathether. I would like to know how easy is it to learn the process, how soon I can take a long overdue shower and go for swim. Afterall I live in New York and summer is short here on Long Island.

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            • #7
              Coastie: You should listen to your PD training. It will take about 3 to 4 weeks before you can take a shower. The training is easy, but if you don't follow it all you could get a really bad infection. Your training will recommend that unless you have your own pool swimming my not be a good option. But please talk to your trainer and listen to them closely. I hope that helps.

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              • #8
                I was told not to swim in swimming pool but ocean was ok just take shower with clean shower head afterwards,hope you are enjoying PD.I like it 100 percent better than HD.

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                • #9
                  Hi, I have bee on PD since April 2014. I work full time and find it the best choice for me. Honestly, I dont think about my condition much. It is just a part of what I need to do to live, like eating, Mybe because I have such a great support team. My DaVita Center is Amazing and my family is awesome. I hook up at night and sleep through the whole process. During the day, I just go about my day. I think PD is the way to go.

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                  • #10
                    I am just starting PD myself on Monday I already have the catheter installed my training is to begin this Monday

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                    • #11
                      Dear Francinealexis I have been thinking of PD but heard lot of complaints about drain pain and hernia, could you shed some light on this, please, also can a person do this 4 days a week I don't work so I can be very fixable. Thank Brian

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                      • #12
                        Hi Brian, PD, in my opinion, is definitely the option providing the most flexibility and the fewest food, drink and other restrictions; however, it is not a "few times a week" thing. PD is either done manually (CAPD - continuous ambulatory peritoneal dialysis), which is generally done with four exchanges per day. Each exchange will involve infusing 2L (2000 ml) of dialysate into your peritoneal cavity, allowing it to remain, or dwell, for 4-5 hours, draining it and then re-infusing a new 'batch' - this process is repeated every 4-5 hours, continually, except at night, at which time you'd infuse a different solution and it would be left to dwell during the whole night, while you sleep. In the morning, you would drain and then resume the 4-5 hour schedule. So, for example, an exchange schedule might look like this: 7:00 am - 1st exchange, 12:00 pm - 2nd exchange, 5:00 pm - 3rd exchange and 10:00 pm - night exchange. An exchange, from "hook-up" to completion, generally takes about 30-35 minutes. See the following link, for a good animation of an exchange and how PD works: http://www.kidneypatientguide.org.uk/pdanim.php
                        PD can also be done at night with a machine, called a cycler (APD - automated peritoneal dialysis). The cycler exchanges 8-12 litres of dialysate, automatically, over a period of between 8-10 hours and then leaves 1-2 litres to dwell during the day.
                        I'm currently waiting to get trained and start using the cycler (one has to be trained and use CAPD, for at least a month, before getting put on the cycler so that, in the event of power outage, etc., you would be able to revert back to CAPD, from the cycler), but even on CAPD, I have continued working full time (up to 45 hrs. per week) at my early childhood development centre - so a fairly demanding, physically active job.
                        As for drain pain and hernias, in my experience, drain pain hasn't really been an issue. I have experienced it; however, generally only at the very end of my drain, which signifies for me that I'm "empty" - as soon as I clamp the line and/or close my catheter, the pain stops. As I've experienced it, it is generally sort of a pinching type crampy feeling (similar to a menstrual cramp, but with the name Brian, I can probably assume that doesn't mean anything to you). I did have two hernias, that I hadn't known about, until the surgeon found them prior to doing the surgery to insert my PD catheter - he fixed them at the same time that he put in the catheter. I did, also, experience some leaking of peritoneal fluid, a few months ago, that required I decrease the number of exchanges/day, in order to decrease the pressure on my abdominal lining, to allow the tear to heal. Most people, under the same circumstances, would have had to do hemo-dialysis for the period of time for the tear to heal, but because I still have some residual kidney function and still make urine, I was able to drop to only a night time exchange. Hopefully, I've answered a couple of your questions, but, if not, I'm sure someone else will have the answers you're looking for. Good luck - you've come to the right place to find some answers and support

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                        • #13
                          I'm totally lost. I am a caregiver to my live in boy friend of seven years. I work full time out of home. I really do not want him to do this at home. We will be making a choice this month with the doctor. I know he will not have the patience to do this, and I do not have the time. He has MS also and can hardly walk. But I have heard bad things about going to the clinic also.

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                          • #14
                            I have just been told that I will be going on PD soon - not sure what my GFR is, but my kidney function is at 11%. I am hoping to contact someone to share more about PD - this is all so new that I will not get specific info until my 25 MARCH meeting with my doctor. He just gave me all this informaiton on 29 JAN. I would like to hear more from "francinealexis" as you stated that you have been on PD since April 2014 and that you sleep through the whole thing. That is my hope!

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                            • #15
                              MJHAIDER GFR 11 is the same at 11% usage of kidney's if that is all the doctor is using to measure your GFR. Have you had a 24 hour urine test? There is a lot of information in this web site if you put PD or types of dialysis in the search at the top.
                              Also, http://homedialysis.org/?gclid=CP3Vp...FY07OgodkHMAZw is a great place to interact with others on PD or HHD. Hope this helps you. I am on HD in center and can not do PD because I have PKD which the doctors have told me I have too much scar tissue. It is important to read everything you can and take care of your care.

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