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  • I am very new here and curious if anyone has had just a pancreas transplant.. I've been type 1 diabetic for 20 years... I'm on an insulin pump and not on any dialysis.. my kidney levels are slightly elevated but doctor says it is not a concern yet.. any thoughts..?
  • Hello all,

    I'm 3 years 2 months post transplant & came to the conclusion the other day I felt better, more radiant & vibrant 18 months ago. My bloods are very stable. The only things I seems to be struggling with are moods thanks to prednisone & premature ovarian failure (diagnosed last year just as I turned 41 -all due to the immunosuppressive meds, thanks) & quite a bit of fatigue -mild anemia- and general disinterest in life. Not hopelessness, just kind of lack of ability to be interested in anything or motivated to do anything, and yet I am bored stiff!

    My doctor just says snap out of it and go for a run, set a goal every day and achieve it etc. He refuses to treat with HRT or anti anxiety meds or antidepressants. 

    I guess I am just not happy. But also not unhappy or ungrateful. So has anyone else gone through this too and what did you do to beat this kind of thing?

    Thanks, Marilee

  • Lori Westphal May 14, 2017 at 5:12pm
    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 I'm new here. <br />
    Had my transplant march 2016. Now I have notice gfr is declining. Doc said not to worry but now my creatine has elevated. Has anyone expieeenced this. I'm worried about rejection.
    • Let's hope only an adjustment in medication is in order and save the rejection worry for when there is any evidence.....Just remember to breathe occasionally

    • What did your creatine elevate to?
  • can any one suggest that at the time of discarge my creat level is 1.1 and after 5 days it is 1.5 i really got tensed the dr said its a quite normal...is it ?? any one having experience on it...plz help
    • It IS normal because inpatient everything is controlled (diet, fluid intake, medication dosage/scheduling....)  Once home look for steady levels and stay hydrated, that is key to success.

  • Hello my name is Tammy , my husband ( and best friend / soulmate ) is on home dialysis nightly , and we have had our fourth kidney/ pancreas transplant false alarm ..this one took 17 hours of preparation in hospital from the " call" the night before ...to be sent home again .. I really wanted to hear from other people in similar situations .. because we are a very happy couple .. and we try and make the best of what we have been dealt .. .. and we have the most incredible medical care and family and friends , but feel isolated outside our "kidney based world ".... in everyday life , would be fantastic to hear from anybody who understands etc ,
    warm wishes
    Tammy ( the dialysis diva ) xx
    • I had two dry runs before receiving my first Tx.....Third time's usually a charm.  Stay strong, both of you.

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