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Author Topic: Got the call  (Read 9938 times)
Blake nighsonger
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« Reply #25 on: September 11, 2018, 04:37:29 PM »
Quote from: Simon Dog on September 08, 2018, 05:10:59 AM
Quote from: Blake nighsonger on September 07, 2018, 09:17:19 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!
 
       

 
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Blake nighsonger
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« Reply #26 on: September 11, 2018, 04:48:29 PM »
p.s. hang in there !
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Michael Murphy
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« Reply #27 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.
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Jean
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« Reply #28 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.
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One day at a time, thats all I can do.
Simon Dog
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« Reply #29 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).
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MooseMom
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« Reply #30 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?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
jenb
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« Reply #31 on: September 12, 2018, 06:22:55 PM »
So happy for you!
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Simon Dog
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« Reply #32 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.
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MooseMom
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« Reply #33 on: September 14, 2018, 04:12:53 PM »
Quote from: Simon Dog on September 14, 2018, 03:26:53 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?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Simon Dog
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« Reply #34 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".
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PrimeTimer
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« Reply #35 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?   
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Cupcake
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a good year for Chevys
« Reply #36 on: September 14, 2018, 09:12:15 PM »
How's your blood pressure? Able to stop any pre transplant meds?
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PD for 2 years then living donor transplant October 2018.
Simon Dog
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« Reply #37 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.
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kristina
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« Reply #38 on: September 15, 2018, 06:25:34 AM »
Quote from: 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.

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;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Cupcake
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a good year for Chevys
« Reply #39 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.
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PD for 2 years then living donor transplant October 2018.
Simon Dog
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« Reply #40 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.
« Last Edit: September 15, 2018, 10:16:15 AM by Simon Dog » Logged
iolaire
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« Reply #41 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.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
PrimeTimer
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« Reply #42 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?
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Simon Dog
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« Reply #43 on: September 15, 2018, 04:14:56 PM »
They advised low sodium.
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