Post Number: 2
|Posted on Friday, December 16, 2011 - 07:41 pm: ||
Okay, so basically, I went for a routine checkup this Monday, and my doctor discovered that my creatinine levels had gone up to 1.9. Now, after 3 and a half years from my kidney transplant, this had never happened before and, as a slightly paranoid teenager, I'm freaking out about having it rejected or stop working.
Honestly, I don't know any other people who've been transplanted, and this site (which I just recently came across with!) seems like an amazing thing for people like me, who know no one else "like me". Have/did any of you guys have something like this happen, and then came out of it alright? I just would love some words of hope right now!
My doctor said that we'd change from Sandimmune (which I've taken from the beginning of my transplant) to Rapamune, as he mentioned that sometimes it may be caused by side effects of the medications. I'm kind of nervous about this too, but hopeful it will be the solution.
I'd love to hear from anyone who's gone through something similar, or if you know someone who has, and whose transplant kept "working" after it.
Thanks, and if it sounds like a rant, I'm so very sorry, but I just feel so happy to finally have found a great looking (sounding?) bunch of people who I can relate to and look up to for advice about this whole thing.
Post Number: 187
|Posted on Thursday, December 29, 2011 - 06:56 pm: ||
First of all, calm down! A few questions to get info: Do you get lab work regularly and what was your creatinine last time? Did your doc seem upset? Have you been drinking enough fluids?
My kidney is 3 1/2 also. My creatinine has been 1.7-1.9 for almost the whole time. It is stable, and my docs are happy. The levels DO jump every now and then, usually when I am a tad dehydrated. If you do repeat labs, DRINK a ton first!!
I get bloodwork every month. Always have. I see my home nephrologist every 4 months and my transplant team every year now. Was more.
I am wondering if your levels crept up, or was it a sudden jump?
The docs know when to be worried and when it is just a little thing. Did he order a biopsy? If he does, don't panic! it will help them see what is wrong.
Until you get more labs done, relax, drink lots of water and let the docs do the worrying!!
email anytime. this is my second time around, and I am happy to help support you!!!!
kidney recipient 3/11/96, deceased donor, John L.
- dialysis started 11/15/07
son Billy gave me the gift of life May 6, 2008 at The Ohio State University! Amazing!
|Grateful for my unknown donor
Post Number: 2
|Posted on Thursday, December 29, 2011 - 07:30 pm: ||
Hello Victoria, i had a lung tx almost 4 years ago and my cr levels were anywhere from 1.8 to 2.6. Then this year because of some other issues, they changed me to Rapamune and the levels dropped immediately. i think yours will too. Let us know. }}
Post Number: 5
|Posted on Monday, January 16, 2012 - 09:25 pm: ||
hank you, everyone!
It's been a while since I posted my little "rant", but I (for some reason) thought no one would reply. How wrong I was! Thank you very much for all of your advise/experiences. It's been a month, approximately, since I changed to Rapamune, though I am still taking 25mg Cyclosporine in the morning and in the evening.
I've recently been experiencing sort of a light-headedness kind of thing, though it feels more like a random "inner head-bobbing", that I just cannot quite name.. accompanied by some mild (what seem to be) panic attacks where I feel the need to "check" if I'm okay, and not going back to when I was sick, though these go away. I've also experience nightmares two nights this month, and I used to get no nightmares before.
I'm not sure if this could be because of the medicine changes, or because I was so stress and anxious about the change, and this is sort of the "release" of all the stress I had... any similar experiences?
Thank you all so much for being so nice and sympathetic!
Post Number: 5250
|Posted on Monday, January 16, 2012 - 09:47 pm: ||
I would bet that if you make sure to drink water it would help. I know that I, for one have creatinine levels that go up and down, depending on if I have drank enough water. Just talk with your doctor about this. I am sure also that if you switched medications, that your transplant center is watching your numbers, so you might just let them know about this.
Post Number: 131
|Posted on Tuesday, January 17, 2012 - 09:31 am: ||
In last week, I know one person's creatinine lever changed from 1.8 to 1.2 just in 3 days. So drink lots of water or juices.