I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Pianolion on February 01, 2007, 11:31:00 AM
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I know I haven't posted much the past week or two - maybe that's because things have been frickin' CRAZY for one thing! Just to let everyone know - I am out the door in five minutes to the hospital. My sister is giving me a kidney!!!!
Her kidney's functions are ridiculously high - something like 68 and 70% each, which makes no sense to me but who's complaining? ;)
The surgery itself will begin about 10:00 tomorrow on my sister - she was able to get it done laproscopicly. I will be going in around 12 probably.
I've got to get a move on - but I will possibly have internet access in a few days depending on WiFi access and such. I might be released by Wed if all goes well, but I'll try to update before then. Wish me luck - I don't know whether I'm excited or scared or both!! ;D
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:2thumbsup; Good luck Pianolion!
I will be thinking of you!
All the best,
Karol :clap;
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Good luck! God be with the two of you.
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Good Luck keep in touch as soon as you are able. :grouphug;
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YAY!!!! Congrats and good luck Ill be thinking of you both!! :clap; :2thumbsup;
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Congrats! :2thumbsup; Wonderful news. :clap; Hope you both do well and keep us posted as you can.
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WOW, Pianolion! Great news!
All the best to both of you! Kelli
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This is always such great news to hear! Wishing you and your sister successful surgeries and speedy recoveries! :grouphug;
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Wow Great news Good luck to you both
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Congrats!
:bestwishes;
Hope it all goes perfectly!
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Great News! God Bless You Both!
:cuddle;
Let us know as soon as you can how you both are doing.
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So happy for you, Pianolion! Hope you and your sis heal quickly, can't wait to hear another success story.
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Woohooo Pianolion, that is awesome!! My prayers are with you and your sister ;)
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Pianolion all the best to you and your sister. My God be with you both. Boxman55
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How wonderful for you Pianolion!
Best wishes to you and your sister.
Hope your new kidney last many years.
.
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Good Luck and all the best!!! :2thumbsup; :2thumbsup;
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Her kidney's functions are ridiculously high - something like 68 and 70% each, which makes no sense to me
I would like to understand that because when they tested my mom they said she had 49% function in one kidney and 51% in the other. Then when I got back to my city my dialysis unit said that they can't tell exact percentages per kidney like that but only over all function as a whole. But since they told your sister separate percentages now it has me thinking. I wonder if anyone can explain that. Besides, I thought really good working kidneys should be working 100% function in each separately if this is the case! How is 68% and 70% each working ridiculously high?
Anyway, good luck and I hope you post all about it here when you are back and recovered!
:clap; :2thumbsup; (we need a good luck and get well soon smiliey.. )
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Very good questions angie, I was wondering that myself. I know when I got my first transplant from my mom, they never told us her percentages, we just assumed they must be 100% b/c they said her kidneys were GREAT, and they proved it b/c the minute they hooked it up to me I started producing urine, lol.. they didn't even have me closed up yet and i'm peeing :P
I shall do some research on this question today, see if I can find anything while we wait for Ms Pianolion to return. ;D
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Very good questions angie, I was wondering that myself. I know when I got my first transplant from my mom, they never told us her percentages, we just assumed they must be 100% b/c they said her kidneys were GREAT, and they proved it b/c the minute they hooked it up to me I started producing urine, lol.. they didn't even have me closed up yet and i'm peeing :P
I shall do some research on this question today, see if I can find anything while we wait for Ms Pianolion to return. ;D
Thanks Angela! :2thumbsup; I appreciate it! :thx;
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Ok... Here is what I found.
"Kidney function is measured in percentages. Two normal kidneys account for 100% of
kidney function. A single kidney provides about 50% of kidney function. One can lead
a normal life with one kidney as long as the single kidney remains healthy. When kidney
function drops to less than 50% of normal, the risk of health problems increases.
Serious health problems are more frequent when kidney function drops to below 20%.
Dialysis or transplant is necessary if kidney function falls to 15% or below."
So my understanding is each working kidney should have 50% function, or 40 and 60, something to equal 100%... so when she said that they were ridiculously high at 68% and 70%, that means her sister has like 138% kidney function... :lol; So I would say her kidneys are working AWESOME.
Thats how I understand it... did I interpret all that correctly?
That was copied from this site: http://www.childrensoncologygroup.org/disc/le/pdf/KidneyHealth.pdf
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Ok... Here is what I found.
"Kidney function is measured in percentages. Two normal kidneys account for 100% of
kidney function. A single kidney provides about 50% of kidney function. One can lead
a normal life with one kidney as long as the single kidney remains healthy. When kidney
function drops to less than 50% of normal, the risk of health problems increases.
Serious health problems are more frequent when kidney function drops to below 20%.
Dialysis or transplant is necessary if kidney function falls to 15% or below."
So my understanding is each working kidney should have 50% function, or 40 and 60, something to equal 100%... so when she said that they were ridiculously high at 68% and 70%, that means her sister has like 138% kidney function... :lol; So I would say her kidneys are working AWESOME.
Thats how I understand it... did I interpret all that correctly?
That was copied from this site: http://www.childrensoncologygroup.org/disc/le/pdf/KidneyHealth.pdf
Thank you for that information!! But knowing that .. why did they tell my mom who they said passed all tests and was a Perfect match, that she could NOT donate a kidney to me when hers were tested at 49% and 51% = 100% ??
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I don't know... Was there any other tests that came back not normal that would of made them say no? Or was that the reason they told you? I would call and demand answers... Unless we totally just don't understand what were talking about here. :lol;
If they told us my moms kidney function, I dont remember it... I just know it was very good and she was a 5/6 match.
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I don't know... Was there any other tests that came back not normal that would of made them say no? Or was that the reason they told you? I would call and demand answers... Unless we totally just don't understand what were talking about here. :lol;
If they told us my moms kidney function, I dont remember it... I just know it was very good and she was a 5/6 match.
well maybe it was the antibodies as they never told me what mine are.
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Hi everyone :)
Wow, I'm finally back home - I was released Tuesday evening at 7 after being admitted Thursday around 4 or so. The surgery was originally schedule for 7 in the morning because my sister and I were part of a DOUBLE transplant with a pair of brothers from Kentucky (how cool is that? the recipient was a redhead too by the way :P) But since my sister's procedure was more complicated they flipped us to the later one - were supposed to go down about 10 but we definitely didn't make it down to pre-op until 2:30. No eating or drinking since midnight so you can imagine how grumpy we were :)
Anyway, the surgery went wonderfullly - Sarah's left kidney was taken out laproscopically and placed in my lower right side, about a five or six-inch incision. Everyone who's looked at it says it's it's healing great - the head of transplant at UT Hospital did my part, and he's just a hoot. He came in to my room the night before to chat with me and answer questions, and he had a checkered bow tie on under a leather jacket - made me smile right away! They said the kidney started busily working right away, and that doesn't surprise me one bit seeing that it's my super-efficient sister we're talking about! I had to have a catheter in for about three days, but once it was taken out I started going on my own after about four hours (I have no shame whatsoever about that anymore, with my pee bag being on display for the world to see).
Sarah has had a harder time recovering from surgery than I in some ways, but she's certainly getting stronger every day. I think she wasn't quite as prepared for the pain as she thought - she's never had surgery and is usually as healthy as a horse, whereas I knew what to expect from my dialysis surgeries. She's still not too interested in eating much - and she's a vegan (no meat or diary products), and the hospital cafeteria had a hard time dealing with that for some reason. But I think being at home is helping her the most.
I need to go and hobble around the house for awhile (believe me it'll take awhile too), but I plan on being back on here very soon to update some more and interact and such. This is SUCH a wonderful resource and place of support - I wish I had found it so much sooner! Thanks SO MUCH for the good wishes and thoughts - take care everyone :)
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Great to hear your doing so well :2thumbsup;
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good to hear it went so well!! :cuddle;
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:cuddle;
It's so wonderful to hear from you! I hope Sarah gets better soon.
Please tell her I said LIVING DONORS ROCK!!!
Best wishes to both of you! :waving;
Karol
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Thanks for the update we have been thinking about you everyday. I'm glad things are going as planned and I hope Sarah recovers quickly. :2thumbsup;
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So great to hear that you and your sister are doing well, hopefully both of your recoveries are quick and painless. Keep on keepin' on my friend... :2thumbsup;
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Hi everyone :)
the recipient was a redhead too by the way :P)
There is power in redhair...power over me that is. :rofl;
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Pianolion. So glad you are doing so well. Stories like this are so uplifting. The very best of health to you and your sister both now and the future. :beer1;
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That is great news! Glad your both doing well... hope to hear from you soon!
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Well, we've been at home since Tuesday and I can't believe how much progress both of us have made! I can make it up and down the stairs normally (and slowly), and Sarah has been out to the library twice to catch up on work things. I also can't believe how good things taste, for another thing...I enjoy eating now! Still can't stand up for very long, but am more active around the house.
I've already had my first post-op appointment with the transplant surgeon, and he's already decreasing the Prednisone :) Everyone says that my scar looks great - the resident did one of those without stitches or staples somehow. I still don't like looking too closely though ;) Had to go in the hospital with the lovely mask on of course - it's not so bad in a HOSPITAL, but I don't know about other places yet. Maybe I'll be able to get away with not too many trips outside until it's ok to go around w/o one. I just hate the way people sort of edge away from you when you're wearing one, you know? But some people will look into my eyes and smile deliberately at me to make me feel better, so that's nice.
Oh, and the meds?? It's like taking a whole meal in and of itself! I think I'm on 11 right now, but I do know they're tapering off after a few months or so to 4 or 5. The regimen's easy to get used to - Lord knows I had enough to organize while on dialysis - but my body's still like "whatthehell??" getting all that stuff at once, and I'm usually out of commission for a bit about an hour after taking them. Surgeon isn't concerned - he's says I'll get used to it - but will it take very long?
BUT - none of that matters compared to how much better I'm feeling!! I'm still recovering and weak of course, but I'm just so joyful at the absence of that particular tiredness/lethargy I guess I've lived with for 10 years now. That's what makes me think I first developed kidney disease in high school, even though none of my biopsies were conclusive - I never had quite the energy all my friends had, and they weren't super-hyper, just normal. My sister's still a little worse for wear, but what she said to the surgeon right during testing, when he was cautioning her about pain and side effects, was this: My sister's had too many "bad days" for me to remember; I can spare a few of my own to help her live like everyone else again.
Like I said, an angel through and through :) Hope no one's totally bored at my ramblings - it's just such an awesome time for me right now I hardly know what to do next! Take care and I'll be posting.
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So glad to hear you are both recovering! Which immunosuppresant are you taking?
Jenna is on Cellcept and Prograf, which makes 14 pills a day. The other 17 pills a
day are to aid in the recovery of surgery and will be discontinued over time.
Your sister is great! An Angel - hope she feels better everyday! Take care!
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That is so great to hear you are doing so well! Your sister sounds a lot like mine - she always said to me "I will do whatever it takes to make sure you have a long and healthy life!" Even though every day I think about what all has happened, I have moments when I am totally overwhelmed by what she did for me! Like Karol said...live donors rock, and sisters like ours are like angels on earth! By the way, my sister donatec to me in December, and she has been back "up to speed" for a while now! ;)
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This is all such lovely news. Hearing about family members donating so willingly really touches me. Thanks for sharing, Pianolion. And it is not at all boring. PLease keep us posted continually (and at length!) My caring thoughts and prayers are with you both. Your sister is really an angel.
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Thats such a wonderful story, not boring at all, we love to every detail! I still wish my moms kidney worked... i still feel bad that it failed but I know it wasnt my fault... and I got a perfect match kidney now, so i guess it was planned this way!
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So glad to hear from you again, pianolion, and that you and your sis are doing so well. Time is a great healer... Best wishes for continued good health!
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Pianolion,
congratulations! What an inspiring story, I wish more patients had siblings like your wonderful sis - tell her she is truly special.
Both of you are in my thoughts.
DeLana :grouphug;
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Hi Pianolion,
I have been wondering how you and your sister are doing.
Hope all is going well!
Karol
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Hi everybody :)
I know it's been awhile, but I'm FINALLY feeling good again - it's been a little up and down the past few weeks. I'd basically had to isolate myself this past month due to the immunosuppresants and all that, but of course, I got something anyway, woo! Guess it's better to get all that stuff over with while I'm staying home as it is.
I got a UTI from the stint they left in me, but thankfully none of the annoying symptoms - just being OVERWHELMINGLY tired. And with that decimating my immunity even further, I got the good old upper respiratory infection shortly thereafter - let me tell you, I was P.O'd!! The worst part about the past couple weeks wasn't BEING sick, it was GETTING sick...because after a week or so of feeling so much better physically, all of a sudden I felt like I was back on dialysis again - no energy, no desire to do anything, etc. For some reason, the transplant clinic really dragged their feet getting test results back to me, so I was left wondering what was the matter with me, would I ever feel normal again, blah blah...in other words, self-pity extravaganza!! But when I finally knew my tiredness was due to something specific, things became much easier for me to handle.
So I still sound like a frog, but guess what - today is the one-month anniversary of my transplant, and you know what that means...yes, I can now go places without that damn mask!!! (except for the hospital, but i can definitely live with that). In celebration, I dropped by the college yesterday and picked up my diploma :clap; :beer1; ;D After ten years, I finally have that beautiful piece of paper...I'm getting it framed today.
And my sister is completely back to normal - back to work and going great guns as usual. No ill effects whatsoever, besides the post-operation difficulties :clap; As for me, they're decreasing the Prednizone slowly (I'm down to 15 mgs now); my Cellcept and Gengraf are about the same, though it seems they change the dosage slightly almost every week. I'm working on solving the lovely "donut hole" problem - anybody take Ganciclovir (Cytovene)? We're seeing if I can get on another med that has a low-income program I can enroll in to help with costs; my income right now is $630/month from SSI, and I can't really start working for another month at least. Plus, student loans. Enough said.
But regardless of the challenges, I feel so much more equipped to handle them now. I'm organizing personal and financial affairs while I have the time - all the stuff I just couldn't focus on while in school and on dialysis.
Thank you so much for all the good wishes!! I've been a bad, horrible, awful poster lately, but I'm in a better place now and plan on keeping up with the boards again. Take care everyone :)
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Hang in there girl!! godspeed..Hope you feel on top of the world soon. :grouphug;
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So happy to hear how you are doing. Our caring thoughts are with you. PLease continue to let us know your progress. And congrats! :yahoo; on your diploma!
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Sorry this is so late, but glad to hear from you. Congratulations on the diploma, and I pray you will soon feel better again.