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  • #46
    I am a patient, not a caregiver, but I am empathetic. Catheters are the pits for both the patient and the caregiver. I don't exactly understand why his PD catheter is not working. If he needs to go on hemo and he can get a working AV fistula or graft -- they surgically join an artery and vein in an arm or leg -- he will have a much easier time of dialysis and he will get better dialysis results. Ultimately he will feel better and will be able to better participate in his own care. Whether PD or hemo is better for him depends on his body. Some people do better with one and some with the other. Don't stand for your HMO deciding which type is better for him. The HMOs like PD better because it is cheaper for them.
    To the stars through difficulty!

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    • #47
      Well said, Nancy. Cheaper ain't always better.
      Whatever does not kill me makes me stronger...Neitzsche
      Flip

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      • #48
        fistula gram

        If any of you have had a fistula gram would you please tell me what to expect? I have to have one done on the 17th of April. If this one can't be redone or opened up then they will be putting in an artificial graft in my other arm.I am truly not looking forward to any of this but it has to be done.Has anyone had this experience before? Are you awake during this procedure or do they medicate you? I must say I have learned more from your info on this site than I find out from my doctors.Do the artificial grafts do just as good or are there problems? I look forward to hearing from some of you.

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        • #49
          got graft

          I had to have a graft put in March 2007 since my veins were so bad a fistula wouldn't even work for me. The vein mapping they did is just an ultrasound and is not painful in any way.

          The graft surgery was something different. That was really painful for me, but they do put you out and give you great pain meds after. They did the surgery on a Monday and I went back to work on that Thursday. I wore a sling so people would know to be careful around me. The biggest job was trying to keep my dogs from jumping and laying on me. They just wanted to give me love and support, but I was not in the mood.

          My graft has been working great since we started using it the end of October.

          Dogmom

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          • #50
            If they just do the ultrasound mapping, it is totally painless and takes only a few minutes. I think, though, that what is being referred to as a "fistula gram" is a slightly invasive procedure in which, much like a heart angiogram, they insert dye and possibly a balloon to resolve clots, narrowings, etc. For these they give you some sedation but you are not completely unconscious. There is little pain during or afterward and you will have one or two stitches in your arm where they have made incisions to insert the instruments. You will have to ask them what they will do if they are unsuccessful in opening up your fistula. I don't know if they would put you out and do the surgery right away or schedule it for another time. As for fistulas vs. grafts. Fistulas are better, but grafts do work well. Grafts don't last as long as fistulas and the possiblity of complications is greater because you have a foreign body (mesh tubing) in your body.
            To the stars through difficulty!

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            • #51
              fistula

              chfnancy, thank you so much for the info.They did do the mapping already. It sounds like the dr is going to let me know on the 30th of April when the surgery will be done and what they will be doing exactly.You were very helpful to me.I can't say enough about the awesome people that are on this site.I will keep you posted.

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              • #52
                getting a fisula

                hi there,

                I'm the one that is short of breath and has to have 50mg of Ben every time I run, one Monday I'm getting a fistula, but they have not said that I have to protect my arm like everyone on here says why don't they tell me this stuff. I am ridding or I was supposed to ride my dressage horse on June 15, they said it would be fine....the surgen....now I'm worried...
                but the caths just make me have some sort of allergic reaction. It sounds like I will have to protect this arm like gold.....plus the veins are not very big imagine that..

                Comment


                • #53
                  Numbing Cream


                  There is a cream available, it's called EMLA cream. It's a little pricey. A small tube, probably no bigger than a Blistex tube, was 10.00.
                  You apply it to the fistula area about 1/2 hr. before dialysis, and wrap the area with Saran Wrap.
                  That being said, I did all this, and no difference. It numbs the top of the skin, but it's not numb when they insert the needles, and possible have to move them around.
                  Guess sometimes you just have to grin and bear it.
                  It also helps if you apply a daily moisturizer to the area, to keep the skin soft, because if it is tough like mine, itcan really be painful some days.

                  Good Luck, and God Bless


                  Kolesgramma

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                  • #54
                    Most health insurance with prescription coverage will pay all or part of the cost of the EMLA cream. It does only numb the skin and not the veins, but it does help. As for protecting your fistula arm, you must do that at all costs. Try not to fall on it, sleep on it, or bump it. Don't lift heavy weights (over 10-15 lbs.) with that arm. Don't allow any one to take your blood pressure or give you IVs or injections in that arm. And squeeze the rubber ball they will give you after surgery regularly so that your fistula will mature properly. I don't know about the horse riding. Your surgeon must feel that the danger of falling is not very great.
                    To the stars through difficulty!

                    Comment


                    • #55
                      Numbing Cream

                      Hi, Everyone. I am tagging on to this thread to ask if anyone has recommendations for numbing cream that is as effective as LIDOCAINE-PRIOLCAINE (same as Emla, I believe) but is over-the-counter? Right now, I get L-P with a prescription but recently there are some issues with my insurance (long story, will spare you the details.) If it is not sorter out--and soon--I will not be covered for this cream. I really need it. I am not brave enough to deal with the needles without numbing the area. I just started using the big needles a few days ago and even with numbing cream, feel it a bit....can't complain really as it's bearable. DO NOT want to even think of doing it without numbing cream. And so, I am worried when my current tubes runs out, I might not get another prescription covered.

                      Does anyone have advice as to what OTC creams are as good as L-P (or Emla) but NOT AS EXPENSIVE? I am not working and haven't been since December. (I just got disability two days ago.) Even with disability I have no extra cash to pay for L-P or Emla (both cost around $40 - $50.) Thank you!

                      Also, by the way, would like to say that I leave the cream on for up to 2 hours before my dialysis. Wrapped in saran wrap AND SEALED WITH TAPE. I think this is essential to ensure numbing affect. I noticed it did not work for me if it was just 1 hour. My opinion only and what seems to work for me.

                      Thank you!

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                      • #56
                        It's OTC in Canada but about as expensive. My insurance pays for mine. I use mine as prescribed, 1-2 hours before and covered with a non stick adhesive pad. I never feel a stick.

                        You can get the numbing shot at your dialysis center. I've seen several patients doing that.
                        Whatever does not kill me makes me stronger...Neitzsche
                        Flip

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                        • #57
                          My dialysis center is owned and run by my nephrologist who does not believe in the creams nor injection numbing agents. Creams due to getting into the fistula and infections and needles due to extra scarring.I have been doing needles since oct. 2007.I can tell you in the beginning it is new and scary and it hurts no matter what. The arm must get used to the process. I can also tell you I met someone who had been on dialysis a few years when it was all new to me and said "dont worry one of these days you wont even feel it" and you can be sure i did not believe him. well now july 2008 there are places where i really dont feel it. over time the nerves do die and you really dont feel it.It takes about 6 months to get through from emotionally freaking out every time to it's no big deal. In the beginning my blood pressure would be 20-30 points higher than normal and would drop that much right after the poke was done and i was running well...in the beginning i would take tylenol a while before hand just to calm my nerves. My stomach would get upset just before going to treatment in anticipation of the needles...all of these are normal reactions.
                          But giving up-death sentence....no it is not that bad physically---he is psyching himself out and dont let him do it.i bury my face in a pillow every time and i do not look. Hope this helps.

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                          • #58
                            Fistula and Numbing Cream

                            FlipW and Ropester, thank you both for your input and advice. I will check out the Canada stores. I've seen some on the web. I too have been told I don't feel anything after a while...I am not there yet. Still need the support of numbing cream!!

                            By the way, did anyone have problems logging onto the DaVita site last night and earlier today? I could not access it until a few minutes ago. Kept asking for password and name but not the username/password I used on the forum. It just did not recognize anything I entered.

                            All the best,
                            Fiona

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                            • #59
                              Originally posted by chefnancy View Post
                              I am a patient, not a caregiver, but I am empathetic. Catheters are the pits for both the patient and the caregiver. I don't exactly understand why his PD catheter is not working. If he needs to go on hemo and he can get a working AV fistula or graft -- they surgically join an artery and vein in an arm or leg -- he will have a much easier time of dialysis and he will get better dialysis results. Ultimately he will feel better and will be able to better participate in his own care. Whether PD or hemo is better for him depends on his body. Some people do better with one and some with the other. Don't stand for your HMO deciding which type is better for him. The HMOs like PD better because it is cheaper for them.


                              Absolutely, the HMO does not know what will work best. Only the Dr. and patient will know that answer.

                              In my case, PD was not an option for me....other medical complications did not make me a good candidate for it. Regardless, will an HMO force me to still go with PD? I think HMOs are well know not to pay any expenses at all.
                              My Blog Site
                              Http://www.dailyhemo.org
                              sigpic

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                              • #60
                                FMBK, have you tried asking your social worker and/or your physician to intervene with your insurance company? This cream is essential to your mental well-being if not to your physical well-being. Most insurance companies do cover it.
                                To the stars through difficulty!

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