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| | |-+  Jenna's PD training started today
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Author Topic: Jenna's PD training started today  (Read 7927 times)
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #25 on: September 16, 2013, 10:50:41 AM »

It's been 10 days of PD for Jenna, 2 manual exchanges per day. She stays dry at night. Had a little shoulder pain one day, most likely from air bubbles, but she was good the next day.
We have to order supplies. They keep calling but we haven't counted what's left. Hopefully we won't get as much as last time as they sent enough based on 3 exchanges per day plus extra in case of an emergency.
I am glad she's doing the manuals as she's pretty comfortable. Sometimes she gets a "little pinch" on draining, but no drain pain like people describe on the cycler.
So far Jenna's gets back what she put in. No swelling or weight gain, and her BP seems good.
I think she could have waited a few months to start, but once you get the tube implanted you're stuck, I guess.
Her labs are in a week. I don't expect much of a change as her GFR was 13 and creatinine 4.2.
Overall she is adapting well.
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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
MooseMom
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« Reply #26 on: September 16, 2013, 12:18:05 PM »

I'm glad to hear she's doing OK!  Thanks for letting us know.
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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."
Deanne
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« Reply #27 on: September 16, 2013, 01:56:18 PM »

I'm glad she's doing so well. Do you know when she'll start on the cycler?

I have to order supplies next week. They told me to order enough for one month plus one week for just in case... 
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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
Joe
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« Reply #28 on: September 16, 2013, 02:47:19 PM »

Glad to hear that all is going so well. When you call in your inventory you likely will tell them what you are using daily and they will adjust the order accordingly. And yes, once you have the cath placed, you do have to start using it at least occasionally. It helps get the peritoneum used to the fluid load.
I've had occasional drain pain while on the cycler, but have always been able to clamp the line, jiggle around a bit to move the tubing and carry on. It's only uncomfortable for a couple of minutes and doesn't happen that often.

Keep up the good work!
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #29 on: September 16, 2013, 04:35:51 PM »

I'm glad she's doing so well. Do you know when she'll start on the cycler?
 
There are no plans to for now, with only 2 exchanges a day. She just fills, goes about her day, empties in 4 to 6 hours, then does it again, final drain at night. It takes 20 mins twice a day, and 10 mins for the final drain, so it's really easy to do the manuals. We have a friend who has been doing manuals for 8 years and she works full time as a RN. I don't know if Jenna will do that, but she's got a lot more freedom than she did on hemo in-center.
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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
Bambino_Bear
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« Reply #30 on: October 11, 2013, 12:53:42 AM »

How is Jenna doing with her exchanges?  My husband starts training 10/17. 

 :bestwishes;
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I am a caregiver to my wonderful husband,  He is 36 and started PD October 2013. We have several living donors waiting to be tested for a transplant. Dialysis is a bridge to get us where we need to go. 
~Life is what you make it~
MaryJoe
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« Reply #31 on: October 11, 2013, 10:19:47 AM »

I'm glad Jenna is doing well on PD and has more freedom and flexibility in her life. She is a tough young lady and I admire the way she has handled all the difficulties she's been through. And you're pretty terrific too, Mom!   :grouphug;
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #32 on: June 26, 2014, 09:26:14 PM »

I haven't updated here as things have been going well. After 8 months of doing manual exchanges of 1200 ml 3 times a day, they have now increased it to 1500ml 3 times a day.
Jenna does everything on her own, and typically leaves the fluid in for 4 hours. Her kt/v is good but her creatinine has gone up so she might have to do something new. She's taking 2 different BP meds and her BP has been around 125/91 the last couple of months. She has no food or fluid restrictions, and she's still urinating, so I guess she still has a little residual function in her Brave Little Kidney.  We are in the process of adding another transplant hospital, this will be number 3.
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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
MooseMom
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« Reply #33 on: June 27, 2014, 01:40:02 PM »

Which are the three hospitals where Jenna is/will be listed?

How are Jenna's spirits?  Is she holding up pretty well?  How are YOU holding up?
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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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Photo is Jenna - after Disneyland - 1988

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« Reply #34 on: June 27, 2014, 08:20:09 PM »

Don't want to mention them specifically yet because she's just beginning her evaluation at number 3 but they are all in So. Calif.
She has some days when she's tired and it's so much to do. But most of the time she's doing ok.
I am a bit stressed. Her sister came home after working 6 months in Vietnam and has some unexplained illness. Her brother is home from college for the summer and has a weird sinus problem. I am really tired of seeing doctors.
How are you doing MM?
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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
MooseMom
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« Reply #35 on: June 27, 2014, 08:59:56 PM »

Oh, I am just fine, Okarol.  But it sounds like you are living in a house full of cooties. I am not surprised you sre stressing out! 

I hope all goes well getting Jenna onto the third list.  I will be eager to hear all about it once you are comfortable talking about it!
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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."
Wat76
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« Reply #36 on: July 28, 2014, 11:15:34 AM »

Hoping Jenna enjoys PD, once she gets use to the manuals, she will love the freedom PD gives you.  Wishing the best for her, I have been doing PD for a year and half now and loves the flexibility.
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PKD: PD started in February 2011.
Live, Laugh and Love daily.
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