High Risk Transplant - I'll be twittering w/my donor too!

[alrightstill]

So I'm actually sitting at the hospital right now getting my first ever treatment of plasmapharesis.  Gotta say, so far it's not bad at all.  I think I have just been anticipating it for so long.. but it really does just feel like a regular dialysis treatment.  What worries me is the nurse said as the treatment goes on I'll get colder.. and colder.. and colder.     Tomorrow I'll bring my heated blanket.

After here I'll go back to my hotel to have lunch and spend some QT with my doggys.  Then I need to be over at this IVIG place by 1:30pm.  They were going to just do IVIG at my hotel but it turns out that the place that supplies the IVIG is only 3 miles from the hotel!  So might as well just get it done there. 

But anyway - so I wanted to let you guys know that I started a twitter account that I'm going to try to update as much as I can with the going ons of the plasmapharesis and IVIG and anything else kidney related.  My wonderful angelic of a donor is going to start tweeting on the same account soon.  The surgery is scheduled hopefully for Thursday.. if all these treatments go well!  If you do follow the twitter let me know your SN name on here too. 

http://twitter.com/NKidneyOTB 
(we're both huge New Kids on the Block fans... so the name is New KIDNEY On the Block har har har).

I hope to one day look back at this twitter account.. and hope that it will help others who may be going thru this.. or thinking about going thru this.

[Sluff]

Thats awesome!Thanks for including us. 

[paris]

Hope all goes well for you     Looking forward to the updates.

[okarol]

Best of luck that the treatments do their job and Thursday you have the NEW KID!
 

[alrightstill]

Thank you so much everybody!!

I have to admit.. I was really really REALLY nervous.  I still am.  I've been around 95% PRA for the past 10 years.. so hopefully this will work.

I'm sitting at the IVIG infusion center now.  I pretty much have a whole clinic to myself, just here with the nurse and my mom (who just ran to Starbucks for me, haha).

Like I said, I'm going to try and update as much as I can!  I may actually get annoying with all the updates..!!   

[Sunny]

What a good idea to use Twitter.
I hope the IVIG treatments go well and lower your PRA's where they need to be. Good luck.

[alrightstill]

Boy oh boy ohboy.  What a crazy ride it's been.

In a nutshell, plasma/IVIG worked WONDERS!!  The transplant was able to be done on December 3rd... but then.. in typical me form, there was something else to worry about.  I've always had really low blood pressure (well, since maybe 2003ish).   Low was  in, when I checked  intothe OR that day it was 60/30..but I felt fine! Never had symptoms and all my docs were aware of it.

Because of the low bp though, the kidney wasn't getting enough blood flow. For FOUR HOURS after transplant in recovery they gave me NOTHING for pain afraid of lowering the BP more.. by the 4th hour they gave me FOUR FREAKING TYLENOL!!  Oh I was a mess. Screaming, cursing, hitting people, pulling hair.. the pain was intolerable.

They began loading me up with fluids.. like LOADING LOADING.. At my peek, I was close to 60lbs over my dry weight.  My legs, ankles, arms.. everything was so swollen and bloated my skin was literally starting to crack at the seems  and I would  randomly just start  bleeding. The kidney was producing urine, but very very verylittle.. maybe 10mls a day..

They put me on an IV  drip of a bunch of different meds to raise and keep my bp up.  Ultrasound looked good, biopsy looked great, no signs of rejection, max scan looked good..s howed blood was flowing great to the kidney.. now it was just being lazy.  They were saying its because of the blood pressure and how the kidney isnt used to working with such low bp  (BUT HELLO! They knew about this before hand.. why didn't we try to adjust it before hand?)

Then I had to get another surgery because the incision was leaking so much.   I won't go into details too much but I am absolutely traumatized by that last surgery.  Though it was only half hour long, I woke  up too soon and still had the breathing tube down my throat  ... i t was horrible. Anyway, they also put in a JP cath drain grenade thing  and by the 14th they sent me home w/the grenade, and telling me to continue dialyzing to get all the extra fluid off with NxStage.

Which  leads us to today.. still just waiting for this baby to "wake up". My first kidney took awhile to wake up too but it was from a cadaver.. I have a  living donor this time.  I'm a little nervous, but they seem to have no doubt that it WILL wake up. 

This morning I've peed the most I've ever peed in a 2hr span  (a whopping 200mls) but I'm hoping maybe this is  it!!!

Still tweeting away on twitter if  anyone wants to follow.

Please wish me luck and hope that the kidney wakeywakeys soooon!

[Sunny]

That has been a very difficult time for you. If they released you from the hosptial, though, they must think everything will work out okey.
I hope the kidney wakes up soon and drains all that fluid so you can start feeling better. Good luck.