literally out the door!!

[Amanda From OZ]

good to hear it went so well!! 

[okarol]

 
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! 
Karol

[Sluff]

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.

[goofynina]

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... 

[Sluff]

Hi everyone 

  the recipient was a redhead too by the way ) 

There is power in redhair...power over me that is.   

[Ken Shelmerdine]

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.

[angela515]

That is great news! Glad your both doing well... hope to hear from you soon!

[Pianolion]

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.

[okarol]

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!

[Jill D.]

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! 

[Bajanne]

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.

[angela515]

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!

[anja]

  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!

[DeLana]

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   

[okarol]

Hi Pianolion,
I have been wondering how you and your sister are doing.
Hope all is going well!
Karol

[Pianolion]

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        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    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 

[Sluff]

Hang in there girl!! godspeed..Hope you feel on top of the world soon.

[Bajanne]

So happy to hear how you are doing.  Our caring thoughts are with you.  PLease continue to let us know your progress.  And congrats! on your diploma!

[Joe Paul]

Sorry this is so late, but glad to hear from you. Congratulations on the diploma, and I pray you will soon feel better again.