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  • v APRILMAY1956
    Briana - Have a happy birthday!

    emoticon emoticon emoticon emoticon
    4123 days ago
  • v JAMIE4496
    Gremlin Doormen.
    I'll have to tell that to my eye specialist the next time I see him!
    Ahhh...Ensure milkshakes. I had A LOT of those when they were trying to fatten me up after I started dialysis. It's difficult for people to believe how hard it is to eat when you don't want it and it just doesn't taste very good. I was told how everything would taste good after my transplant. BOY were they ever right!!
    Make sure your eye doc keeps an eye on the lenses of your eyes, too. It took years before they figured out why my vision was 20/2000 in bright light. They were so curious about those freakin' spots on my retina, they looked right past the problem. The first time the eye surgeon saw the lenticonus, he said, "NEAT! " He then caught himself and put a hand on my shoulder and said," I'm sorry, I'm sure you don't think so." All the other doctors and student got to come in for a look. He actually did a paper on it...had a lady in his office research my family tree to try to find a source of the Alport' dice.
    4717 days ago
  • v JAMIE4496
    I got to be one of the subjects of a "Grand Rounds" at my eye specialists'. He brings in all kinds of eye doctors to get first-hand looks at some of the more unusual problems. There must have been 30 people look in my eyes that day. They compensated me for my time, so it was OK. Do you have those "granular" deposits on your retina?
    I have a cute nephrologist too, so don't be so sure you can't find another cutie!
    4717 days ago
  • v JAMIE4496
    I take it that you have no family history of Alport's? I don't. It took a few years for my nephrologist to even agree that's what it is. He had never seen a case in a female. My doctor put me on Zemplar (some sort of viamin D) after the Sensipar. It didn't effect my PTH, but drove my calcuim too high. Have you had any vision problems? The lenses of my eyes became misshaped--anterior lenticonus, they call it. I had the standard surgery for cataract removal and I'm doing fine...I CAN SEE!! The surgery to remove the parathyroid is not as risky, now, but I certainly understand why a singer wouldn't even want to take a small risk.
    I got to look at the new Delta aids...small! I started with BTE when I first started wearing aids. I could go smaller, but I'm so used to having a volume that I can control I choose to stay with the standard style. I'm hoping that I'll be able to afford the ones with Bluetooth capability the next set I buy. I saw one that you could switch between being on the phone, or listening to music from a MP3 player. Very cool.
    I may have to switch to Prograf from my cyclosporine. After 11 years, my creatinine is creaping up. The doc says it could be the medication is causing damage--not uncommon after years of taking it. What side effects did you have from your rejection medications?
    (Feel free to ramble anytime! I can relate! Ha!)
    4718 days ago
  • v JAMIE4496
    Hi Brianna!
    I'm Jamie from the Kidney Transplant Team. I have Alport's Syndrome and cannot believe there are now three of us on this team! The hearing aid technology is getting better and better. I hope you can find a way to keep on singing. I notice you are taking Sensipar. I assume it's for hyperparathyroidism? I've taken it with no change in my PTH levels. How did you get off of prednisone??? I've been hearing that kidney patients cannot get off of it like other transplant patients can.
    It's great to meet you!
    4718 days ago