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My dad won't talk about the "tube" that he is about to recieve to begin his dialysis.

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  • My dad won't talk about the "tube" that he is about to recieve to begin his dialysis.


    Hi - my name is Kelly and my dad is about to have the gallbladder surgery and tube placed, and will soon begin "home" dialysis. This is my first time to be on this site, so please bear with me. My mom will be his caregiver and she attempted to talk to him tonight about their journey into this "unknown world" - he quickly let her know that he did not want to talk about "the tube"!!! He told her that he wasn't too worried about the gallbladder surgery, but he just did not want to talk about the other. They have attended 2 classes and have had their premlim appts with the prespective doctors, who will do the surgery and his Nephrologist (sp?) - he has seemed, during this process, to be pretty prepared for this. Maybe not. I am not aware of him going online to research or much less try to find a support group. However, after reading some of the posts that i have read tonite, "the tube" seems to be very bothersome until you figure out what works best for the individual. Maybe he HAS looked online and perhaps has read this - thus, the dreadful attitude. It sounds to me that most patients finally get comfortable with it within time. Here is my next concern: our family has planned and booked a family cruise for late December of this year.... that is only 3 months from now..... I am pretty sure that this is not going to be attainable???? We have all been under the assumption that he would feel 100 times better as soon as he starts his actual dialysis!! This was how his doctor explained - my dad asked this doctor (approx 2 months ago) if he could atleast just wait until after the 1st of the year to begin these plans, and the doctor said, "do you want to feel good and enjoy your cruise or feel tired and miserable? Then we DO NOT need to wait!" From what I have gathered from peoples comments, you do not feel better that soon after you begin dialysis!!! I would appreciate some feedback - I know this is lengthy and maybe not even making alot of sense?? Feel free to ask me any questions about this matter, if I didn't explain our situation so well....

  • #2
    Re: My dad won't talk about the "tube" that he is about to recieve to begin his dialy

    Hello kjwqueen1 and welcome.

    Each person is different as far as how they take to dialysis. You did not specify what type of dialysis he is going to be on other than Home Dialysis. With a tube, that could mean PD (peritoneal). If that is the case, he very well may be able to go on the cruise in December as PD is a very portable type of dialysis. My husband is on PD and we have traveled quite a bit. Just takes a little pre-planning.

    As far as comfort, most PD patients will tell you that the tube becomes a part of them and in a very short time.

    Keep coming back to the forum and feel free to ask any question. There are a lot of wonderful members who will be happy to help you in any way they can.
    "Life isn't about waiting for the storm to pass...
    It's about learning to dance in the rain. "

    Comment


    • #3
      Re: My dad won't talk about the "tube" that he is about to recieve to begin his dialy

      Hi Kelly. Everyone deals with dialysis in their own way. Give him time to talk about it. By the tube, do you mean a tube in his belly (Peritoneal Dialysis) or in his chest (PermCath for Hemo Dialysis)? I am using the one for Peritoneal Dialysis as it sounds as if there has been time and isn't so sudden to need a PermCath (preferred method for Hemo Dialysis would be an access such as a Fistula in the arm but takes time to grow).

      I myself preferred Peritoneal Dialysis and was able to travel on it very easily. People can travel on Hemo Dialysis too but I never did as I was in center and worried about trying to book with other units as a transient.

      A peritoneal dialysis tube looks like this:



      and a hemo dialysis PermCath looks like this:



      **Please note the 2nd picture only does not have a dressing because the picture was taken between dressing changes.**
      Angie
      Kidney KornerDialysis Ethics Forum Kidney PixAwareness Shirts KidneySpace Donor Search
      I will be walking a Kidney Walk in Ontario Canada Sept 18th 2011
      • Peritoneal Dialysis = 4 yrs
      • Hemo Dialysis (in center) = 2 yrs
      • 2 kidney transplants = 1990 - 2001 & 2007 to present

      Comment


      • #4
        Re: My dad won't talk about the "tube" that he is about to recieve to begin his dialy

        Hi Kelly,
        I understand your concerns and uncertainitites, when it comes to dialysis, I have been living on dialysis for almost two decades now, ten was devoted to hemodialysis and I am now in my tenth (10th), year of peritoneal dialysis (PD). I see he has chosen PD as his dialysis treatment of choice. From experience, I have learned that both dialysis treatments have their advantages and disadvantages, and of couse they are totally different dialysis treatments. However, the advantages to PD, are the fact that you don't have to be stuck with needles, and you don't have to be a unit every other day for treatment, everything is done at home, but there are some patients that prefer to make a trip every two weeks for their EPO shot, but you can do them at home, it is your choice, if you feel comfortable giving yourself your shot at home. Also, I had to get use to having so much solution in my belly for the dwelling period, which is from 3 to 4 hours between manual exchanges, but what I really still don't like is the idea, that my belly sticks out and is very noticeable, especially since I am so slim in stature. Well I could go on and on, so if you ever have any questions or concerns about PD, just hit me up anytime, JeffMoore, I would be happy to share my experience and extensive knowledge of this very complex renal diet and anything to do with the PD experience.
        Take Care
        Glo

        Comment


        • #5
          Re: My dad won't talk about the "tube" that he is about to recieve to begin his dialy

          Hi kjwqueen1,

          Welcome to Davita forums, I would like to add to this thread some extra helpful resources that may help you further educate yourself and your family about dialysis. I hope you findn them helpful...


          - Can I Do a Home Dialysis Therapy?
          - Kidney Failure: Treatment Options for Individuals
          - Why Should I Choose a Home Dialysis Therapy?
          - Kidney Disease Patients Expressing Views of Hope
          - How Will My Intimate Relationships Change on Dialysis?
          - Will I Have a Greater Chance of Infection with Peritoneal Dialysis than with Hemodialysis?

          For more videos you can search my blog and find other related videos about dialysis...

          -
          -
          -
          My Blog Site
          Http://www.dailyhemo.org
          sigpic

          Comment


          • #6
            Re: My dad won't talk about the "tube" that he is about to recieve to begin his dialy

            Wow Gus those links are very useful! I am going to make a post on my forums with those links so people visit them because I think it is helpful for anyone! Thanks!
            Angie
            Kidney KornerDialysis Ethics Forum Kidney PixAwareness Shirts KidneySpace Donor Search
            I will be walking a Kidney Walk in Ontario Canada Sept 18th 2011
            • Peritoneal Dialysis = 4 yrs
            • Hemo Dialysis (in center) = 2 yrs
            • 2 kidney transplants = 1990 - 2001 & 2007 to present

            Comment


            • #7
              Re: My dad won't talk about the "tube" that he is about to recieve to begin his dialy

              Wow!!! Thanks for all of the info!! Not quite sure who is getting this reply (i hope everybody) - im not just real "computer savvy" and still trying to figure out the web site - my Dad went to see the surgeon today and has a date of Oct 2nd to have the gallbladder removed and tube inserted - YES he will be doing PD - he is going to try to keep his job and hopefully this treatment will allow him to do so - he sounded very positive when we spoke so that made me feel really good - i heard, from a friend who is a nurse, that you have to dump the return bag so therefore you cant totally do all of this while you sleep? Im sorry if i sound really uneducated about this, but i have done some online research and am slowly getting it. I'm really curious about the part of dumping, comments would be appreciated. Thanks again for all responses - can you believe im a doctors wife?? He is Family Pract and i hate to bother him after he has been working all day - besides, i like "first hand" info!!!!!

              Comment


              • #8
                Re: My dad won't talk about the "tube" that he is about to recieve to begin his dialy

                Originally posted by kjwqueen1 View Post
                Wow!!! Thanks for all of the info!! Not quite sure who is getting this reply (i hope everybody) - im not just real "computer savvy" and still trying to figure out the web site - my Dad went to see the surgeon today and has a date of Oct 2nd to have the gallbladder removed and tube inserted - YES he will be doing PD - he is going to try to keep his job and hopefully this treatment will allow him to do so - he sounded very positive when we spoke so that made me feel really good - i heard, from a friend who is a nurse, that you have to dump the return bag so therefore you cant totally do all of this while you sleep? Im sorry if i sound really uneducated about this, but i have done some online research and am slowly getting it. I'm really curious about the part of dumping, comments would be appreciated. Thanks again for all responses - can you believe im a doctors wife?? He is Family Pract and i hate to bother him after he has been working all day - besides, i like "first hand" info!!!!!
                I usually click on New Posts to get new posts but yours wasn't listed but I got the email. Since the email does not give a link to the thread but instead your email address I had to search from your profile for your post. But I am here and reading your reply now. Anyone can see this reply so I thought I would reply . Every forum is different so it will take time to get used to this one. Don't worry, we are nice and patient!

                Yes you can do it all while sleeping. The bag gets dumped when he wakes up and is done all his exchanges. I found it best to has as much as I could set up for the next night after getting up in the morning, that way if tired before bed and just wanting to go straight to bed, it is easier knowing all is set up and very little is left to do. Mind you that I think most places use Baxter now and the last time I did it I was using Fresenius. My center changed to Baxter as well but then I had to change to HD and then got a transplant. Last time I did the Cycler through Baxter was in 1990 so things have changed since then. I did it through Fresenius from 2001 to 2005.

                I loved the freedom and having dialysis done while I slept. It didn't interfere with my life at all!

                Actually .. .. here .. I got a great idea! Watch this video that Shay from www.kidneyfun.net made while she was on the Baxter Cycler before she ended up getting her transplant finally:

                http://www.youtube.com/watch?v=Evg0K2hhSx0
                Angie
                Kidney KornerDialysis Ethics Forum Kidney PixAwareness Shirts KidneySpace Donor Search
                I will be walking a Kidney Walk in Ontario Canada Sept 18th 2011
                • Peritoneal Dialysis = 4 yrs
                • Hemo Dialysis (in center) = 2 yrs
                • 2 kidney transplants = 1990 - 2001 & 2007 to present

                Comment


                • #9
                  Re: My dad won't talk about the "tube" that he is about to recieve to begin his dialy

                  I also used the Baxter night Cycler. Wish I had seen Shay's video back then. (2007&2008) . I actually did not use the dumping bag unless I travelled. Mine emptied into a large blue water bottle. The kind you put in the water cooler. My husband then had it hooked up to empty into the regular plumbing. I just found the bags so heavy to lift when he was out of town. The cycler certainly gave me my life back after 6 months on hemo.

                  Comment


                  • #10
                    Re: My dad won't talk about the "tube" that he is about to recieve to begin his dialy

                    Yeah my PD Cycler was a Fresenius which I found that system VERY hard to lift the bags and glad practically everyone uses Baxter now.

                    This is the system I was on:



                    and here is Shay's
                    Angie
                    Kidney KornerDialysis Ethics Forum Kidney PixAwareness Shirts KidneySpace Donor Search
                    I will be walking a Kidney Walk in Ontario Canada Sept 18th 2011
                    • Peritoneal Dialysis = 4 yrs
                    • Hemo Dialysis (in center) = 2 yrs
                    • 2 kidney transplants = 1990 - 2001 & 2007 to present

                    Comment


                    • #11
                      Re: My dad won't talk about the "tube" that he is about to recieve to begin his dialy

                      Hi Jeff, Thank you for sharing your story with us. I hope you are doing okay. My best most sweetest friend in the world is just starting dialysis, I think the PD kind but like Kelly's dad she is not talking much about it, and I am wondering the best way to help her. She comes form a long line of stoics and is everyone elses best advocate, but even advocates need advocates right?
                      I am wondering if there are any tips you could share abot the complexities of the strict renal diet and/ or any coping mechanisms that you can share will be greatly appreciated. You are a hero for sharing your story, and I am glad to see that you have been able to survive dialysis for so long you are an inspiration for all! Thank you so much and stay strong for yourself and all of us okay?
                      Thank you!

                      Comment


                      • #12
                        Re: My dad won't talk about the "tube" that he is about to recieve to begin his dialy

                        Hi Kelly,
                        I hope your dad is coming along now and finding a balance with his new PD treatments. I am on PD now for only 3 months and I am beginning to feel better. Still tired and adjusting, but nothing compared to how I felt prior to starting PD. Hopefully your father has found the same.
                        I am on the cycler PD at night, and I do not have to empty bags. There are drain lines that can be run straight to the toilet or to a bath tub. If the drain is too short to reach, there are extension tubes.
                        Did you ever get to go on that cruise, and did your dad get to go and enjoy it? I sure hope so.

                        My best and prayers to you and your family.
                        God Bless!
                        Always,
                        Christine.

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