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  • I hate Dialysis

    I am a 37 yr old female who has outwitted dialysis for most of my life then wham 6mnths ago it happend. I got sick and my kidneys started to fail, to be perfectly honest I HATE dialysis, I hate having to sit in a chair for 3 and a half hours bored senseless out of my mind, hardly a soul to talk to, having to sit without moving incase the stupid perm-a-cath in my neck decides to play up, the fact my pulse races anywhere up to and over 150. i thought i could deal with it, ive delt with everything else my health has threw at me. so why do i resent Dialysis so much, if it wasnt for my husband, son and mum and dad i think i would just tell them to get lost and do without it. I am starting to hate Mon.Wed and frid the days inbetween arent much better if im not out in hot flushes in throwing up, but because of my family i keep going thing is how do i get myself used to it, in a very short time they will begin using my Fistula and since i know im terrified of needles this is heaping more anxiety on top of an already anxious person! can some one give me some ideas to get thru the time without being so bored or uptight

    THank you

  • #2
    I know what you mean!!!

    I know what you mean. At times I feel the same thing too. I have been on dialysis for almost 10 years. I try not to focus too much on the dialysis days. I try to keep myself busy on non dialysis days. I help others I have hobbies, drawing, crocheting, reading, gardening and having lunch with girlfriends etc. I take books to read at the clinic I also take anything to read including my mail. I take my mail and read it there and respond to it. I write letters to relatives I watch TV. I try to make conversation with the staff every little thing you do will kill time and distract you from focusing on the time. I'll even take my breakfast or lunch and eat there while watching tv and time goes by faster. Sometimes I sleep for a while. I subscribe to magazines and take them with me. I'll even use my cell phone to talk with a friend or a family member for a few minutes. Anything to kill time or else I get very restless and anxious. But I have learned to control that and work with that. I hope this will help you. Good luck.
    Originally posted by decapitated_baby
    I am a 37 yr old female who has outwitted dialysis for most of my life then wham 6mnths ago it happend. I got sick and my kidneys started to fail, to be perfectly honest I HATE dialysis, I hate having to sit in a chair for 3 and a half hours bored senseless out of my mind, hardly a soul to talk to, having to sit without moving incase the stupid perm-a-cath in my neck decides to play up, the fact my pulse races anywhere up to and over 150. i thought i could deal with it, ive delt with everything else my health has threw at me. so why do i resent Dialysis so much, if it wasnt for my husband, son and mum and dad i think i would just tell them to get lost and do without it. I am starting to hate Mon.Wed and frid the days inbetween arent much better if im not out in hot flushes in throwing up, but because of my family i keep going thing is how do i get myself used to it, in a very short time they will begin using my Fistula and since i know im terrified of needles this is heaping more anxiety on top of an already anxious person! can some one give me some ideas to get thru the time without being so bored or uptight

    THank you

    Comment


    • #3
      I understand

      Don't worry...I too was very sick at the begining. I'm a 30 year old female on hemo dialysis. It seemed as though at the beginning I'd come home and be sick. It wasn't until they started using my fistula that I got better, believe it or not! I was very worried to start using the needles, but just have them use lidocane (did I spell correctly?)...The nurses said they don't like to use that all the time because it makes the skin around the site very tough, but if it's one thing I've learned...it's your body! YOU call the shots...if you start to cramp let them know. Have them turn you off. Be open with your staff and if they truly care about you and what they do...they'll listen! They are there to help you.

      Hang in there...One thing that I always tell myself during my treatments...they always end!

      Comment


      • #4
        Originally posted by decapitated_baby
        I am a 37 yr old female who has outwitted dialysis for most of my life then wham 6mnths ago it happend. I got sick and my kidneys started to fail, to be perfectly honest I HATE dialysis, I hate having to sit in a chair for 3 and a half hours bored senseless out of my mind, hardly a soul to talk to, having to sit without moving incase the stupid perm-a-cath in my neck decides to play up, the fact my pulse races anywhere up to and over 150. i thought i could deal with it, ive delt with everything else my health has threw at me. so why do i resent Dialysis so much, if it wasnt for my husband, son and mum and dad i think i would just tell them to get lost and do without it. I am starting to hate Mon.Wed and frid the days inbetween arent much better if im not out in hot flushes in throwing up, but because of my family i keep going thing is how do i get myself used to it, in a very short time they will begin using my Fistula and since i know im terrified of needles this is heaping more anxiety on top of an already anxious person! can some one give me some ideas to get thru the time without being so bored or uptight

        THank you
        Check out ihatedialysis.com You will LOVE the site!

        Comment


        • #5
          Suggestions to Kill Time

          The night before my dialysis, I gather up what I want to take to read or do. This is the first time I have had the time to enter the Publisher's Clearinghouse Sweepstakes, read the AARP Newsletter, the Costco Bulletin, etc. I bring my flower catalogs and imagine how those beautiful flowers will look in my yard, then when they materialize, I cut bouquets for the nurses and techs to enjoy. I bring my favorite tapes and CDs and my best stereo earphones and hum along with Mitch. I found a neat Spanish Language tape course at a garage sale and practice my Spanish on the hispanic techs. I bring the ads from the newspaper and the Penny Saver or Easy Ad on Fridays and plot my course for garage saling on Saturday mornings.

          Good conversations make the time go the fastest. Make an effort to say Hello to people around your age in the waiting room and if you find them interesting, ask to be seated next to them. I have formed some very good friendships with people that I do other things with.

          I go to the earliest seating, 6:30 am at my facility, so I am out of there by 10:00 am and have the majority of the day left. Also, I get more done on my off days because I now wake up early no matter what day it is.

          Make sure to keep on living. Go on as many trips as you normally would.
          I started dialysis in January of last year, and in May of last year I was in Hawaii for a week. In November of last year I did everything I always wanted to do in L.A. for a week while training for home dialysis. Met Jay Leno and Wolfgang Puck. Check out www.NxStage.com. They have a machine that is portable. In three weeks, I'll be in Alaska fishing for 70 pound halibut and salmon. In fact, I have started a travel company specializing in tours for dialysis patients and the dialysis is right in the itinerary. Check it out at www.nephronomads.com.

          I hope these suggestions have been helpful to you.

          Comment


          • #6
            Well, I'd say if you are really bored buy a laptop and bring that with you to play computer games or cards even!

            I've been on dialysis almost 10 years and still feel crappy every single time i leave tjhere.
            Some people say you actually feel better....not for everyone.

            Also, you can get alot of free magazine subscriptions online if you look.

            You could try listening to music or something on tv if they have tv's there.

            Personally I wouldn't want to fall asleep.
            A few months ago, the man across from me lost all his blood as a part in the machine was broken and the sensor did not go off, he ended up in intensive care......not sure what he is up to now...

            sorry, I really don't have any better advice

            Comment


            • #7
              Talk to your doctor about the anxiety you feel. I know there are medications that can help to take the edge off. My mom has a really hard time staying attached to the machine for so long, so her doctor gave her something (the name of it escapes me at the moment though).

              There are also those hand held games you can play, yahtzee, simon, sorry, poker...they are a little more affordable then a laptop.

              Most places have VCRs so you can take movies in, or if you can afford a personal dvd player or laptop.

              Best wishes, my thoughts are with you.

              Comment


              • #8
                coloradoLS

                I also hate needles.I'm terrified of them.I have been stuck using my fistula for sbout a month.I found that if you use 2.5% Lidocaine cream and rub it in real good about 1.5 hours before dialysis there is very little pain when stuck.Try it.It really helps!

                Comment


                • #9
                  i too hate dialysis it is not just the mind numbing boredom of the 4 hr i spend hooked to the machine ( they are trying to increase it to 4 1/2) it is the whole procedure especially the needles those two big fat needles the stab you with twice (provided things go smoothly, if not three four five) and i really i don't feel better afterwards twice i have gone to the emergency room for aspike in blood pressure and on at least five occasions my pressure went so low they almost lost me. i guess what frustrates me most is being a relatively young man there is and does not seem to be any progress towards a cure, in fact it seems dialysis was invented and the whole field of nephrology sat back and did nothing for the last fifty years. at least shorten the time 2 hrs i could swallow but this and for the rest of my life no way, i will try to hang in there for a transplant and keep that new kidney for as long as possible but when it runs out im done i will not return to dialysis.

                  Comment


                  • #10
                    I am sorry you feel that way about dialysis. Have you been on it for long? I have been on for about a year and a half. The first 3 months were pretty hard on me, but after that I have had mostly smooth sailing and I feel a lot better than I used to. If you have recently started dialysis, I hope that it gets easier for you.
                    To the stars through difficulty!

                    Comment


                    • #11
                      me too

                      I've not wanted to post for some time now because I felt bad about being really depressed and hating dialysis. I didn't want to bring everyone else down, since most of the responses to the posts are "you're doing great" or "keep up the good work" or "you're an inspiration to us all".

                      Even though my Neph has lowered my time to 2 1/2 hours, I still think about stopping every day. I don't have the opportunity to have a transplant so I only have dialysis to look forward to. I have many other heath problems and after 40 years of constantly being ill, I'm tired. Dialysis seems to be the last straw. I know I couldn't take anything else.

                      My husband thinks I'm so strong, but its all taking a toll. I take pain meds every day and muscle relaxers, in addition to all the other meds I take orally and get through dialysis. It would be so easy to take too many and just end this, but I keep going and trying one more day.

                      I think it is a little hard for someone who "only" has kidney problems to really understand what it is like for someone who has many other problems to deal with on top of dialysis. Dialysis is a big thing for everyone with fluid and diet restrictions, and it deals a different hand to everyone. No one reacts the same. Your life now revolves around treatments, whether in-center or at home, no matter how you try to ignore it.

                      I'm sorry if this is really depressing and I don't want to scare anyone who has not started yet or just starting. I'm still a rookie having started October 31, 2007, but I just can't get my head around all of this. I don't just sit home, either. I've started back to work on a part-time basis and still drive myself wherever I want to go. But the bottom line is - I don't want to do this!

                      Comment


                      • #12
                        dogmom, I understand how you're feeling. I am now 56 years old. At age 23 a 14 year old boy rode his bicycle into the road in front of me. He died. I've had 10 years of infertility, 4 years of fertility drugs (got one child) had 3 heart attacks, triple by-pass surgery, (which they said may give me 5 more years--I don't accept that! )which required 4 days of continuous dialysis following it, I have pulmonary hypertension and mitral regurgitaion due to having sleep apnea for a long time before being diagnosed last year, I had an "on the verge of cancer" baseball size tumor on my ovary with surgery that removed uterus and both ovaries, diabetes since 1986 (had gestational diabetes in 1979), in 2000 a medicine put me in the hospital with kidney failure which improved on its own, I have neuropathy in my feet, lower legs, and hands, had a broken foot bone which put me in casts for 9 months, charcot arthropathy in left foot which put me in a wheelchair and cast for 9 months, now charcot in my right foot--in the wheelchair again. I'm hoping to be out of it by Christmas. Last March I took antibiotics for a chronic sinus infection and ended up in the hospital with chronic kidney failure. I was on dialysis from March 27th through June 3rd. Once again my kidneys bounced back. Thank You, Lord.

                        As you can see, I know what it is to "have other problems". Through most of the above (except the accident and the dialysis in March), I kept a smile on my face, kept my faith that things would get better, joked (better than crying), stayed happy and content. When the dialysis was required I was fine until I had to go to the dialysis center. That first day I felt destroyed. For two weeks I was at the lowest point in my life. It was not the procedure so much (though I hated the warm blood lines touching me) but the actual site with all the incapacitated people. It broke my heart. It was depressing to me Most were older and "not really there". I couldn't bear to be a part of it though the employees did all they could to make the time pleasant and comfortable. Everyone always thought I was very strong also but I suddenly found myself as helpless as a baby.

                        Thank God I had friends who kept after me, bringing me preaching/teaching tapes, music cds, encouraging me, phoning, stopping by. I was always taught that depression was the highest form of conceit as the depressed person is constantly thinking of self. I realize some forms are caused by chemical imbalances, but mine was definitely because of thinking of myself. I, too, did not WANT to do dialysis. It took a couple of weeks but with their prayers, ministry to me, and my prayers, I came up out of that deep hole. Did I suddenly like dialysis? No, but I was better able to deal with it when my thinking was where it should be.

                        Know that you are not alone. People love and care for you. There are those of us that have had what seems to be more than our share of troubles. But we can still enjoy life, love our families, enjoy time with them, make friendships, etc. It IS still worth it. God is in control and He WILL help us through rough times when we turn to Him.

                        Congratulations on getting your dialysis time cut to 2 1/2 hours! That's great. I had been started on 4 then it was reduced to 3 before being stopped. My GFR is holding at 17% right now but I am BELIEVING it to get even better.

                        People like you and me, that do have a problem with in-center treatment, need to check out home hemo or PD. I'm thinking that PD would disrupt my life the least. We'll see. Have you checked into other forms of treatment?

                        Take care and think good thoughts!
                        My Writings

                        Comment


                        • #13
                          Dogmom, I do know how you feel. I've been there and have come out the other side as Cassie has. But the trip was not pleasant or easy and I do not blame you for feeling the way you do. Dialysis is among the hardest things anyone ever has to do. It is even harder since you have been told there is no possibility of a transplant. I realize that some people truly are disqualified from having transplants, but have you asked recently? Every few months the criteria to qualify for a transplant change because of changes in the practice of medicine and people who were once disqualified become eligible. You have my sympathies and my prayers in your journey. Please do not be afraid to come here to talk. We need to be supportive of those who are having trouble coping as well as of those who are able to accept their conditions.
                          To the stars through difficulty!

                          Comment


                          • #14
                            It has been a while since my last post and unfortunately things have'nt gotten better, my fistula clotted so I had to get a graft (thank God I avoided a catheter). As bad as I find dialysis not having anybody to talk to who understands is frustrating. Family and friends are just glad I am alive so my feelings about how that is achieved are meaningless, they dismiss my complaints with "it's keeping you alive". It's hard to look forward to a transplant that may only give me 10-15yrs and then more dialysis. I would like to see my sons grow up and have kids of their own but 20yrs of this (the thought of 20yrs of this) is I think more than I can take. I think thats the problem this situation is for the rest of your life if I were an old man I could take it better the old guys at the center laugh and smile and I just resent them for their positve attitude, they lived a full life and I was just getting to the good part of mine. I have never been a feel soory for myself kind of guy but this is tough. I can't smile it away, I keep fighting with no end in site.

                            Comment


                            • #15
                              It has been a while since my last post and unfortunately things have'nt gotten better, my fistula clotted so I had to get a graft (thank God I avoided a catheter). As bad as I find dialysis not having anybody to talk to who understands is frustrating. Family and friends are just glad I am alive so my feelings about how that is achieved are meaningless, they dismiss my complaints with "it's keeping you alive". It's hard to look forward to a transplant that may only give me 10-15yrs and then back to more dialysis. I would like to see my sons grow up and have kids of their own, but 20yrs of this (the thought of 20yrs of this) is I think more than I can take. I think that's the problem, this situation is for the rest of your life, if I were an old man I could take it better. The old guys at the center laugh and smile and I just resent them for their positve attitudes, they lived a full life and I was just getting to the good part of mine. I have never been a feel sorry for myself kind of guy but this is tough. I can't smile it away, I keep fighting with no end in site.

                              Comment

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