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  • My 20 year old daughter received a kidney almost 7 weeks ago through the paired exchange. She has been doing very well. However, 3 weeks after the transplant her creatinine shot up to 1.7. She was admitted back into the hospital and put on IV fluids over night. By the time we left the hospital the next day it was back down to 1.2. We assume she just wasn't drinking enough. It has fluctuated between 1.2 to 1.3 ever since. She had a blood test last Monday and it was 1.25, and she had another on Friday and it was 1.35. Her coordinator wants her to get another blood test tomorrow. I get so worried when this happens. My daughter is calm, and never worries She also saw an urologist last week to make sure that her bladder isn't affecting her kidney function. She hasn't been fully emptying it. She has a test scheduled in June to rule out any problems along those lines, but the urologist doesn't think there will be any problem. My question is, is this all normal for the first few months after transplant? I get so fixated on the creatinine level. I wish it were just in the normal range and woud stay there. I panic every time it goes up. What have other people experienced? Also are there any other parents out there who have had a child go through this? She's not a little kid, but she's not totally an adult yet either, and we are having a real tug of war about me being on top of her to drink and what not, and her telling me she's got it all covered. Thank you for any advice.
  • Hi, has anyone here received a kidney transplant while having an ileostomy?
  • Hi everybody,

    I am just over a cold that lasted 5 weeks. I am almost 5 months post tx. My WBC count dropped from 3.5 to 1.9. It is slowly increasing to 2.1,however my neutrophil count keeps lowering to 0.8 now. I just had my first dose of Neupogen and they cut my Cellcept dose to 250 mg twice a day. I am small and only weigh 98 lbs. I also take Tacro 2mg twice a day. No steroids. They are rechecking labs and also CMV tomorrow. I am nervous. Has anyone experienced this? I'm sure someone has. What if the CMV is positive? Has anyone been treated without having to be hospitalized? I have no symptoms. I'm new at this and having anxiety. Thanks to all and God Bless.

  •  Does anyone know if your kidney Fails do they just put you back on the kidney list? Or do you go back to dialysis?

    • I know they will put you back on the list, depending on the degree of failure you might go back on dialysis
    • I can relate my experience, though it is just that, others may be different.  I had a Tx that lasted 13 years before waning.  I returned to dialysis for about eight months before opting for second Tx from an "at risk" donor, who passed on, allowing me to jump ahead of the list.  We are doing fine and it was noticeably better and easier than my first.  I know of others that received a second Tx from a living donor, which happened quickly after the first failed.  Everyone is unique, as is their health needs and issues.

  • I received a kidney transplant 3 months ago after being on dialysis 13 months. I am 56 and fairly active. I was doing really well. Walking up to 2 miles and some light weights. About 2 weeks ago I started having foot and ankle pain. Tried different shoes, cream, all with no difference. It's really immobilized me. I am beginning to suspect it's the meds. I'm on prograf and celcept. Anyone else?
    Also great website! Wish I had found it sooner!
    • Hi Glenda,

      The combination of diabetic neuropathy and nerve calcification from parathyroid issues severely affected my ability to ambulate normally.  When investigating a issue, one must look toward what has changed recent to the appearance of symptoms.  I believe it is doubtful the med mix is at fault if the symptom "suddenly" appeared.  I do hope you find answers soon.

  • Does anyone knows a family/primary doctor? Looking for a primary doctor that has experience with transplant patients. Anyone on this board from the Chicago area? I don't really what to risk going to a doctor without experience and have to worry about something affecting my new kindness.
  • Hello!!   I received a kidney transplant 9 months ago and all has been fairly stable.  My two side effects post transplant were becoming diabetic (yes, I'm on tacrolimus - feeling nervous about trying the switch to cyclosporine)  and the second is recurring eye vessel bursts in my left eye which NEVER happened prior to transplant.   Every couple of weeks I feel pressure in my eye and, sure enough, within seconds, its blood red.   Eye doctor says it's not an issue but I just think it's weird that it started happening so frequently after transplant.    Has anyone had this happen to them??  Also, for those of you who decided to switch from Tacrolimus to Cyclosporine, how was it for you??    Thanks ahead of time!!    

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