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  • I'm so confused right now...I NEED ADVICE

    My mother recently started PD within the last 2 weeks. Prior to that, she was going to in center dialysis 3x a week. My mother's kidneys gave out due to diabetes. She was hospitalized this past December and has been on dialysis since.

    I'm confused because she's feeling more tired than ever....At least with the in center dialysis, she was just tired the day of dialysis and usually the next day she was feeling better. Now she seems to be tired more frequently, and has no energy. She even finds it hard to sit in a chair for a while before feeling the need to go back to bed.

    I've read so many reviews on here regarding PD and everyone seemed to be doing much better after making the switch from in center to PD. We are constantly in contact with her PD nurse and we are trying different formulas, two yellows, two greens, and now a green and yellow fluid bag.

    She is now experiencing diarrhea within the last 4 days, and yesterday she was given a dose of Imodium and it seemed to slow it down, but it was pretty bad at first. The biggest difference has been in the energy level, its less now, and she says she has more heart palpitations than when she was going to the center for dialysis.

    The odd part is her labs have been great and her blood pressure, temperature, and blood sugars are very well controlled and well within normal ranges.

    She has her 8 hour dialysis treatments every night while she sleeps.

    What are we doing wrong? Is there something we're missing? Any suggestions? Did anyone else have a similar experience?

  • #2
    Wow, a whole day goes by and not one response. A bunch of views but not one response. Very discouraging.

    Comment


    • #3
      Thank you for reaching out and describing your mothers situation. Everyone's clinical response to modality transition is different. Some respond quickly and stabilize while others take longer. Your mothers fluid balance and ultrafiltration (water removal) can play a big role in the way she feels day to day. Stay in close contact with your PD clinic and renal dietician. Its great news that her labs are within normal ranges and it may just take some time to adjust to PD. Ask your PD clinic about fluid removal, sodium and overall fluid balance there may be something that can be adjusted to ensure your mothers fluid balance stabilizes if it has not already. Carrying extra fluid in the body can contribute to fatigue. Good luck in your continued journey on PD and don't hesitate to call your clinic with questions.

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      • #4
        Originally posted by cassinreed01 View Post
        Thank you for reaching out and describing your mothers situation. Everyone's clinical response to modality transition is different. Some respond quickly and stabilize while others take longer. Your mothers fluid balance and ultrafiltration (water removal) can play a big role in the way she feels day to day. Stay in close contact with your PD clinic and renal dietician. Its great news that her labs are within normal ranges and it may just take some time to adjust to PD. Ask your PD clinic about fluid removal, sodium and overall fluid balance there may be something that can be adjusted to ensure your mothers fluid balance stabilizes if it has not already. Carrying extra fluid in the body can contribute to fatigue. Good luck in your continued journey on PD and don't hesitate to call your clinic with questions.

        Thank you sooo much for responding. This has been a very stressful time for my whole family. We are struggling to learn as much as possible about PD and dialysis overall. We had no time to study for this as they started my mom on dialysis during a hospital stay in December. Me and my sister are my mother's caregivers. We want to help my mother make the best possible decisions in her care. Today the doctor decided to switch her blood pressure meds to a lower dose. While her blood pressure has been good, it's been on the lower end....He wants to see if it'll make a difference in her energy level.

        The PD nurse and her nephrologist are going to do some switching of her dialysis settings, and change overall dialysis time and dwell time. Hopefully something will work. so weird that the lab numbers are good, but her energy and appetite is so low. She doesn't seem to be retaining fluid, so we're not really sure what's happening. She's only been on PD for about 3 weeks though. I wonder if anyone else has had a slow start with the symptoms of low energy and low appetite when they first switched to PD....

        Hoping some other people chime in......Being in this position can seem so lonely at times, and you feel helpless cause you don't really know what to do. I'm willing to here any advice offered.

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        • #5
          Unfortunately, I can't give you any clinical advice because I'm still new to dialysis and elected to stay with in clinic for the time being. However, I want to thank you for being so concerned and supportive to your mom. I also have a wonderful support system and I want you know how extremely important that is. Hang in there; keep talking to the doctors and clinicians; and take some time to breathe. Good luck to you and your mom!

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          • #6
            I was on PD for one year and switched to hemo because the lack of rest and constantly thinking about the upcoming treatment - when to eat, setting things up, having a tube sticking out of your body, etc - was exhausting. I didn't get good rest at night because of the fill and drain sensation. PD,for me, was horrible and would never recommend it.

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            • #7
              I am going on a little over a month now. And I must say yes i'm sick of it already but I'm sticking to it.I'm started on 10,000 ml yellow & green .... 9 hours a night.Weight & BP on the low end 85\60 nothing higher than 100\.Then they tested the fluid that comes out (they will do that every 6 weeks) and add another 3000 ml My Dr. & Nurse keep in touch all the time.I call my nurse when every I have a concern 24\7 .I still don't feel up to par.Just started to go back to work 3 hours 3 times a week.Only did 6 house the first week.Taking it little by little.my appetite is getting better at fist it was pudding and applesause didn't care if I ate or not.I don't the tube sticking out but I got use to .I did not want to go to the center 3 or 4 times a week so thats I'm I doing it at home.It's getting old ,But I'm going to have to stick with it.It has to get bettwer.

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              • #8
                I know how challenging it is to be the care giver. My husband started PD in January. We have had ups and downs. But he is better than that frightful day that his kidneys failed and he was admitted to the hospital. Keep talking to your care team. Your nurse is your best advocate. Our nurse has helped us THR,u some difficult times. We hope we never have to do the HD again. We much prefer the Pd. prayers for your mom and for you as you care for her. It will get better. Prayers

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                • #9
                  When I was on peritoneal dialysis, I would get tired if I didn't take my epogen injections.... Is she on epogen? To keep her hemoglobin up?
                  Her tired symptoms sound like anemia to me.

                  Comment


                  • #10
                    Hello every one, Like lots of others, I'm really confused. My docter says I'm doing good, he shows me at stage 2, my gfr is 21, itch all over, fatique,and rash.The info I've read does not match what he tells me.Any one else have these problems?I' tried getting another opinon, no other Dr.seem to be available for new patients. Thanks for any info. Hope everyone has a blessed day. Ron

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                    • #11
                      Originally posted by vamina14 View Post
                      Wow, a whole day goes by and not one response. A bunch of views but not one response. Very discouraging.
                      I am not on dialysis yet..... so I review posts about PD to know what to expect. I sure wish I could give you advice, but I cannot. [Maybe other people read posts for education and cannot supply advice either!] I want more control over the entire process so I have chosen PD. I think your post is the first negative PD post I have seen.

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                      • #12
                        Originally posted by rkeeler View Post
                        Hello every one, Like lots of others, I'm really confused. My docter says I'm doing good, he shows me at stage 2, my gfr is 21, itch all over, fatique,and rash.The info I've read does not match what he tells me.Any one else have these problems?I' tried getting another opinon, no other Dr.seem to be available for new patients. Thanks for any info. Hope everyone has a blessed day. Ron
                        That does not sound right to me. I found my Nephrologist by divine intervention for sure! My sister used to be a Chaplain at a local Atlanta area hospital, so she and I contacted the Director of the Chaplancy and he had a doctor's secretary call me. The Nephrologist is nice as can be, very knowledgeable, and the first day I saw him, I was so shocked about the whole ordeal, I am sure I cried. He talked to me for two hours (went into after hours) and didn't charge me a dime. THAT is a blessing! Do you have insurance? Call your insurer and get a list of Nephrologists.


                        I also bless the caregivers. Lots of burn-out in that group, so take care of yourselves. I, on the other hand, have NO ONE to help me (I live alone, have no children and am not married). My siblings live in different states and I have very few friends since I do not work. But I am going to try to stay positive about the process and try to enjoy the time I have in Stage 5 before I start dialysis.

                        Comment


                        • #13
                          Originally posted by rkeeler View Post
                          Hello every one, Like lots of others, I'm really confused. My docter says I'm doing good, he shows me at stage 2, my gfr is 21, itch all over, fatique,and rash.The info I've read does not match what he tells me.Any one else have these problems?I' tried getting another opinon, no other Dr.seem to be available for new patients. Thanks for any info. Hope everyone has a blessed day. Ron
                          Usually itching is caused by too much phosphorus (dairy, cereal, ice cream, etc.). Ask your doctor about Phosphorus Binders. I take Fosrenol and chew a large Tums-like pill while I am eating. It absorbs the phosphorus and eliminates it from your body before it hits your kidneys (or that is what it is supposed to do to my knowledge!). Get some moisturizer for your skin too! With winter just around the corner, possible dehydration issues and no phosphorus binders yet, you will be really itchy. Try not to take really hot showers.

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                          • #14
                            Is there a way you could ask for another blood test to make sure you're in stage 2?

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                            • #15
                              Feel free to ask them to do repeat test if you think it's worng

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