I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Simon Dog on September 07, 2018, 02:26:06 PM

Title: Got the call
Post by: Simon Dog on September 07, 2018, 02:26:06 PM
Age 60, O neg, waitlist Boston area for 6 years 3 months.

Just got the call.   24 year old female, OD probable cause of death (negative tox screen), KDPI 33.

F'in 33!!!   I told the surgeon I would have to stop and buy a lottery ticket on the way to the hospital.
Title: Re: Got the call
Post by: Michelle2016 on September 07, 2018, 03:08:37 PM
I’m so happy for you. Wish you the best.  :bandance;
Title: Re: Got the call
Post by: kristina on September 07, 2018, 03:23:53 PM
Good luck Simon !!!!!!! You have been patiently waiting a long time for this good luck to come along  !!!!!!
I wish you all the best for a good outcome of the operation and the medication afterwards and please let us know how "things" develop.
All the best wishes to you from Kristina. :grouphug;
P.S. Did you buy your lottery ticket on the way to the hospital ?  :waving;
Title: Re: Got the call
Post by: Simon Dog on September 07, 2018, 03:35:02 PM
Still at home.  Surgeon called back and said the hospital will call shortly with instructions.  Surgery now scheduled for 10PM.

Despite not being a D patient after today, my hosting/support services for this site will continue.
Title: Re: Got the call
Post by: kickingandscreaming on September 07, 2018, 03:39:00 PM
Congratulations, SD. I hope everything goes smoothly.  The wait is over.
Title: Re: Got the call
Post by: Xplantdad on September 07, 2018, 03:56:10 PM
Great news Simon!

 Please keep us updated with your status.

Thanks for all that you do for this site :clap;
Title: Re: Got the call
Post by: Simon Dog on September 07, 2018, 04:09:02 PM
Got instructions.   Leaving for wallet biopsy and admission now.
Title: Re: Got the call
Post by: tigtink on September 07, 2018, 05:32:49 PM
Great news!! Good luck!
Title: Re: Got the call
Post by: MooseMom on September 07, 2018, 07:52:41 PM
OMG, that's such incredible news!!!  I'm so excited for you and am really hoping that the next time you post it will be for giving us all of the details of your successful surgery.
And don't forget that this site is for tx peeps, too.  The hatred for dialysis never goes away!

Oh wow...this is so great.  I hope everything goes well for you!!!  Good luck!
Title: Re: Got the call
Post by: Blake nighsonger on September 07, 2018, 09:17:19 PM
Wow great News! Wow! Speedy recovery to you Tim'!!!:)) keep us posted sir.  Ty

Title: Re: Got the call
Post by: iolaire on September 07, 2018, 09:47:22 PM
Congratulations!  I hope all goes or has gone well.
Title: Re: Got the call
Post by: Rerun on September 07, 2018, 11:02:15 PM
I hope and pray all goes well! 

                :beer1; 
Title: Re: Got the call
Post by: PrimeTimer on September 07, 2018, 11:57:50 PM
That's excellent news! Here's to a speedy recovery  :beer1;  We'll be right here waiting for updates!  :popcorn;
Title: Re: Got the call
Post by: Simon Dog on September 08, 2018, 05:10:59 AM
Wow great News! Wow! Speedy recovery to you Tim'!!!:)) keep us posted sir.  Ty
who is Tim?   Planting done, in recovery  room now.
Title: Re: Got the call
Post by: kristina on September 08, 2018, 05:50:01 AM
Hello Simon,
I send you all my best wishes for your successful recovery.
Good luck wishes and take great care,
Kristina. :grouphug;
Title: Re: Got the call
Post by: cassandra on September 08, 2018, 07:39:43 AM
Fantastic News Simon Dog!!!


  :yahoo;


Lots of luck, love and strength, Cas.  :cheer:
Title: Re: Got the call
Post by: MooseMom on September 08, 2018, 08:04:29 AM
Thanks so much for letting us know that the surgery is done and you are on your way to recovery.  Please keep giving us updates!  I am thrilled to bits for you and hope your new life with a new kidney will be all you dreamed of.

Please let us know if you have any questions and if we can help in any way.
Title: Re: Got the call
Post by: willowtreewren on September 08, 2018, 11:49:43 AM
Wonderful news! Here is to an excellent recovery! Whoop, whoop!

Aleta
Title: Re: Got the call
Post by: Paul on September 08, 2018, 02:14:26 PM
 :bandance; Great news, congratulations.
Title: Re: Got the call
Post by: Charlie B53 on September 09, 2018, 06:06:47 PM

Wonderful News!

OK, consider me stupid but what's with the 33?

I'm still much like a newbie and do not know a lot of terms.


Wallet Biopsy?    They think your wallet is too fat and needs to be bled out?

Praying it takes well and you never have any problem with the new meds.

Title: Re: Got the call
Post by: justagirl2325 on September 10, 2018, 07:33:46 AM
Congratulations, I'm very happy for you.  Welcome to post dialysis life.
Title: Re: Got the call
Post by: SooMK on September 10, 2018, 09:06:47 AM
Yay! Congratulations. I hope all goes smoothly--you've been waiting such a long time!
Title: Re: Got the call
Post by: Simon Dog on September 10, 2018, 01:38:18 PM
Wallet Biopsy?    They think your wallet is too fat and needs to be bled out?
Basically.   This is the US - cash, grass or ass ... no one rides for free.

As to the 33 - kidneys are given a KDPI (kidney donor profile index) of 1-100, 1 is best.  Because of my age (60) I do not qualify for a KDPI <=20 and <=30s are given to pediatric patients before being offered to others.  So, 33 is pretty close to the best I am eligible for.   It was the right kidney from a 24 year old female.
Title: Re: Got the call
Post by: MooseMom on September 10, 2018, 01:45:54 PM
Oooh, enough with the numbers!  LOL!  How are you FEELING?  How are you getting on with all of the lessons about the meds? 
Title: Re: Got the call
Post by: Rerun on September 10, 2018, 08:52:01 PM
God bless her and her family.  Don't take your kidneys to Heaven .... Heaven knows we need them Here!!       

Hope you are feeling great~!   Liquid Gold.......     :bestwishes;   :bestwishes;
Title: Re: Got the call
Post by: Blake nighsonger on September 11, 2018, 04:37:29 PM
Wow great News! Wow! Speedy recovery to you Tim'!!!:)) keep us posted sir.  Ty
who is Tim?   Planting done, in recovery  room now.
How are you ? hey sorry ," Tim" it's just an expression expressing  respect I guess,  I mean,...referring to  a type of renewal,... in my mind..., in this present moment,.. a good working Friendship. ... continuing!     

 Wow !!! in recovery Room , yo!     Fantastic news!
 
       

 
Title: Re: Got the call
Post by: Blake nighsonger on September 11, 2018, 04:48:29 PM
p.s. hang in there !
Title: Re: Got the call
Post by: Michael Murphy on September 11, 2018, 08:00:03 PM
One of the true joys in dialysis is when people graduate out to a dialysis free life.  Good luck. Have a good recovery.
Title: Re: Got the call
Post by: Jean on September 11, 2018, 09:18:24 PM
OMG, best wishes. Tons of Luck and God Bless,I will be praying for you. Hope things continue to go well for you!!! :thumbup;  :yahoo;   :clap;    :bandance;     :bow;   and lots and lots of luck. So happy for you.
Title: Re: Got the call
Post by: Simon Dog on September 12, 2018, 01:31:40 PM
Discharged last night, back from follow up with the surgeon today.   They tell me everything is going as it should, or maybe a little bit better.   The bladder will take a month to expand back to full capacity, so I pee 50ml at a time very frequently.   Even have to take a bottle when my wife drives me to the hospital for followup.

The surgeon tells me "I don't know how we ever got that offer (24 year old, KDPI 33), but it was obvious to both of us there was nothing to discuss about accepting it".

It was amazing to see pre-op and a surgical suite opened up for me on a Friday.   Since I was the only one getting a general at that time, I got at least 4 anesthesiologists (not all at the same time).
Title: Re: Got the call
Post by: MooseMom on September 12, 2018, 01:44:25 PM
Thanks for the update, Simon Dog.

Can you tell us about your immunosuppressant protocol?  What are you taking, and what are the dosages?
Title: Re: Got the call
Post by: jenb on September 12, 2018, 06:22:55 PM
So happy for you!
Title: Re: Got the call
Post by: Simon Dog on September 14, 2018, 03:26:53 PM
I am in the very early steps of fine-tuning the immunos.

Not counting the Prednisone and IV tacro I was given while an inpatient, here's the deal:

Cellcept 500mg 2 and 9AM and 9PM

Prograf 3mg and 9AM and 9PM
After my first outpatient blood test, this was adjusted to 5mg.

I get blood draws three days a week and have been told to expect multiple changes to the Porgraf, and they typically end up around 8mg.
Title: Re: Got the call
Post by: MooseMom on September 14, 2018, 04:12:53 PM
I am in the very early steps of fine-tuning the immunos.


Prograf 3mg and 9AM and 9PM
After my first outpatient blood test, this was adjusted to 5mg.

I get blood draws three days a week and have been told to expect multiple changes to the Porgraf, and they typically end up around 8mg.

Yeah, that sounds about right. 

How are you feeling?
Title: Re: Got the call
Post by: Simon Dog on September 14, 2018, 04:24:32 PM
Feeling pretty good, however, the JP drain I still have is an annoyance (no pain, just annoying having in dangle and needing to empty it).   I am making about 1.4L urine a day, but the bladder has not expanded yet (surgeon tells me this takes a month) so I pee 50ML or so at a time frequently.  The urge comes on fast and intense.   I sit on a chux and take a bottle when being driven anywhere,

I am finding I need to adjust my thought processes.    When they gave my discharge instructions and told me "You next appointment with the team is at 1030 on Wed" my immediate thought was "that works since I don't have dialysis on Wed".
Title: Re: Got the call
Post by: PrimeTimer on September 14, 2018, 06:20:26 PM
Glad you are feeling well. Yay Liquid Gold!  :cheer:  Did they tell you to do a little walking each day to help with recovery or is that a no-no for transplant recipients? Next question: Are they having you drink a specific amount of water and/or fluid each day and....oops...another question, does it feel weird to be able to drink more?   
Title: Re: Got the call
Post by: Cupcake on September 14, 2018, 09:12:15 PM
How's your blood pressure? Able to stop any pre transplant meds?
Title: Re: Got the call
Post by: Simon Dog on September 15, 2018, 05:42:22 AM
BP is up to a normal 110/70ish; was typically 80/55 prexplant.

Stopped a bunch of meds including phosphosous binder, paricalcitol, sensipar.

The surgeon told me to drink a galllon a day.   What feels weird is the very frequent need to pee small amounts (50ml or so).   And yes, I am walking.
Title: Re: Got the call
Post by: kristina on September 15, 2018, 06:25:34 AM
BP is up to a normal 110/70ish; was typically 80/55 prexplant.

Stopped a bunch of meds including phosphosous binder, paricalcitol, sensipar.

The surgeon told me to drink a galllon a day.   What feels weird is the very frequent need to pee small amounts (50ml or so).   And yes, I am walking.

Hello Simon, thanks for the update, it is very much appreciated and it is good to know that you are well on your way !
Take great care of yourself and I send you good-luck-wishes from Kristina. :grouphug;
Title: Re: Got the call
Post by: Cupcake on September 15, 2018, 07:45:00 AM
Congratulations! Great to hear. I'm scheduled for October 23 so grateful for all info. Just trying to stay healthy- going to skip 'grand friend' day at the elementary school.
Title: Re: Got the call
Post by: Simon Dog on September 15, 2018, 10:15:03 AM
Staying healthy pre-transplant is very important.

Right now, the person who was supposed to get the kidney I was given is lamenting his/her bad luck having a fever the day the call came in.   I just hope the surgeon did not tell him/her that it was an unusually good offer unlikely to be repeated.

The urge to purge comes on VERY strong and quickly.  Just wet myself while walking the dog.
Title: Re: Got the call
Post by: iolaire on September 15, 2018, 12:31:09 PM
I’m happy you are up and about and able to walk your dog. The whole post transplant month or so is a whirlwind but it will pass soon.
Title: Re: Got the call
Post by: PrimeTimer on September 15, 2018, 03:59:33 PM
I imagine the dog grinning and wanting to say something about karma...who is training who now? But keep up the walking, very important after having major surgery.

A gallon a day?! WOW!    :beer1;  Do they advise anything about sodium intake? In other words, can you have salt on your fries now or hash browns in the morning?
Title: Re: Got the call
Post by: Simon Dog on September 15, 2018, 04:14:56 PM
They advised low sodium.