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Author Topic: Neph thinks I should start D soon...  (Read 4406 times)
KarenInWA
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« on: March 11, 2011, 06:10:01 AM »
I just saw my neph yesterday, and he thinks my fistula (which I don't have yet - yes, I am a procrastinator...) will not mature in time.  My GFR is 13 as of last week, my creat is around 4.  The lower # on my BP was 89 last week when it was checked, now it's around 100!  I don't want a chest catheter, I want my fistula to mature and start D at that time.  I was hoping I had more time, but, alas, I have to accept the reality that I just don't.  I am not nauseas, have no tremors, no swollen ankles (but hell, it's winter), I have an appetite - although it is not as big as it used to be.  But I eat and get hungry, damn it!  I will be seeing the vascular surgeon on Thursday am.

Thoughts?

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
paul.karen
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« Reply #1 on: March 11, 2011, 07:05:33 AM »
The good thing is you dont feel to bad.
So hopefully once you get your fistula (try to fast track it) you will have enough time to have it matured.
I can understand you not wanting a chest cath.

Im sure you know this but the PD operation heals within a week or two and is ready to go.
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
texasstyle
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« Reply #2 on: March 11, 2011, 07:31:45 AM »
You must be feeling so many different emotions at this time. (hugs) You know how your quality of life can determine dialysis no matter what the numbers, but you are feeling well. This is really something for you and your Dr. to discuss. Your numbers though may be enough to go by in the Dr.s mind. From experience my husband's #'s started going down rapidly once they started not to say you are the same. I guess when the time is really there for real, it's a big jolt. You'll figure out what's right for you. *thinking of you*
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caregiver to husband using in-center dialysis 4 years
KarenInWA
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« Reply #3 on: March 11, 2011, 07:32:14 AM »
Quote from: paul.karen on March 11, 2011, 07:05:33 AM
The good thing is you dont feel to bad.
So hopefully once you get your fistula (try to fast track it) you will have enough time to have it matured.
I can understand you not wanting a chest cath.

Im sure you know this but the PD operation heals within a week or two and is ready to go.

Yes, but there is just no way I can do PD.  Just the mere thought of having to be hooked up to a machine for so many hours every single day, via a tube in my stomach, depresses me to no end.  I don't know how I could have a life with that.  It would be way too much of a life change for me.  I'd also have to buy a lot of new clothes, since I don't have loose fitting pants.  I just can't do it.
Logged
1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
Deanne
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« Reply #4 on: March 11, 2011, 09:02:23 AM »
 :grouphug;
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
MooseMom
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« Reply #5 on: March 11, 2011, 09:28:49 AM »
Oh Karen, I really feel for you.  It's the moment of truth, isn't it.  I have imagined this moment for sooooo long.  You are in my thoughts and prayers.  You will be fine.  This is the tough part, I think...that transition from pre-D to D.

If I were in your shoes, I'd get the fistula done asap.  If you want it to mature quickly, ask the vascular surgeon what you can do to make that happen.  You're right...the goal is to avoid a catheter if you can.  I could still happen if you work at it.

As long as you are feeling well enough, stay off D.  Get the fistula done.  If you end up needing a catheter, at least you will have cut down on the time that you will need it.

Everything WILL be OK. :cuddle;
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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."
okarol
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« Reply #6 on: March 11, 2011, 10:18:34 AM »
Karen,
I am sorry, it must be overwhelming. I am going to go back and read your posts but I want to ask about your transplant status.  Every time I read about someone getting a catheter or fistula I wonder why they aren't working toward a preemptive transplant. Even if you don't have a living donor, if your GFR is below 20 you qualify to be listed. I know not everyone wants or can get a transplant, but if you want one - ask about this. (edited: I did read back and you're doing all you can!) It sounds as though you're feeling ok despite the lab numbers, which is always a challenge because no 2 people seem to be the same.  I hope you stay that way for awhile and can get your access worked out.  :cuddle;
« Last Edit: March 11, 2011, 10:22:03 AM by okarol » Logged

Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
woodsman
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« Reply #7 on: March 11, 2011, 05:28:08 PM »
i have my fistulla installed  and am on the transplant list also. I am not startin D until i know its time not the doctors looking at labs. i feel i am the one who will know when its time, right now i feel okay and i wan to be the one to make the decision not him...... :2thumbsup;
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billmoria
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Living life to my max
« Reply #8 on: March 13, 2011, 09:55:09 AM »
I knew D was coming and like all of you wanted to put of dialysis for as long as possible. When the crash came (I was on holiday) it was dramatic, swift and came with no warning. One week I was doing great and then BANG my kidneys just packed it all in.
I WISH I HAD STARTED D EARLIER!!!!!!!!!!!!!!!!!  FOR TWO MONTHS I WAS IN BAD SHAPE AND IF I HAD BEEN ON D A BIT EARLIER I COULD HAVE AVOIDED ALL THAT.
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WMoriarty
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