Jenna's PD training started today

[okarol]

Jenna had her PD cath put in about 7 weeks ago.
She's had weekly flushing with no problems and today she started training with Fresenius.
The nurse talked about labs, ordering supplies, medicines and who she will be meeting regarding nutrition, insurance and other details.
After a lot of paperwork and discussions about sanitary practices, Jenna began to learn what to do.
Because she still has 13% function she will start out doing 3 manual exchanges a day, remaining dry at night.
Originally the nephrologist had talked about doing PD every other day, but somehow that got changed in the translation, so we need to double check with him.
Jenna observed the set up and fill procedure and followed along on a one page step-by-step guide.
It took about 15 minutes to fill with 1.2 liters. After capping her tube we left and went to lunch. She had the fluid in for about 2 hours. She said it was not uncomfortable, just felt full.
When we returned, the nurse reviewed the hand washing techniques again and afterward had Jenna put a gel on her hands and they examined them under a black light to see if any germs remained.
This time Jenna did the bag set up herself, using notes as the nurse guided her.
She was only doing the one fill today so she drained out, which took about 10 minutes.
I think we were both dreading this day and it went fine, so some of the stress is lifted.
Her next training day is Monday.
In the meantime she has a giant notebook to review.
 

[MaryD]

Sounds good.  It might be worth checking about the every other day exchanges and see if that would be possible.  It would be good if she could do that for a while.   

 

[paris]

I'm glad the day went well, but am sad she has to do dialysis again.  She certainly has had a long road, but she has a champion for a Mom that helps her stay strong.   

[MooseMom]

I'm glad that some of the anxiety has dissipated.  Best wishes to Jenna.  I hope she is coping OK.  I'm assuming she is going through the whole pre-tx eval circus again?  I'm sure you've posted about it, and I'm sorry I can't remember what you've said.

[okarol]

Jenna has been wait listed for 1 yr, 9 months. We have been actively looking for a donor. I have ads on craigslist in 18 cities, a youtube video, twitter and a donor search facebook page.
She's got 100% antibodies so finding a match will be tough.
One donor who is not a match has been entered in the National Kidney Registry pool with Jenna for months, but no matches for a swap yet.
We do not want her to have desensitization, due to the increased long-term risk for cancer, on top of the risk due to immunosuppressives.
At some point we may run out of options and she will have to go that route.

[okarol]

First day of training

[GoingThere]

I hope Jenna will be able to live a full life with PD. I'm a little bit surprised that she already has to have D due to 13 % of kidney function left.
Karol, what was her PRA before Tx? 0? Is PRA so high due to transplant rejection?

GT

[MooseMom]

Okarol, I knew you were very actively looking for a donor, but I didn't realize Jenna'd been back on the list for almost 2 years! 

Oh, I really hope all goes well for her and that she likes PD.

[okarol]

The training for peritoneal is mostly reading and review, much of which Jenna already knows. She is proficient now with taking vitals, set up, filling and draining exchanges. She will stop in the clinic for a couple more exchanges and then her supplies will arrive in Sept.

Photo is from my phone using Auto Painter.

[okarol]

Okarol, I knew you were very actively looking for a donor, but I didn't realize Jenna'd been back on the list for almost 2 years! 

Oh, I really hope all goes well for her and that she likes PD.

She was eligible to be listed once her GFR stayed below 20, which was actually Jan. 2010, but it took forever to get the evaluation accomplished.

[RichardMEL]

Since I've never done PD a couple of probably stupid questions...

1. I note the lovely Jenna is wearing a mask? Is that usual procedure or has she been a bit unwell and perhaps to stop sneazing germs on her stuff?

2. I've never heard of the black light being used to show germies on hands - it's interesting, though I suspect very scary for most people to actually see the crap that covers their hands!!! I think it's good though to double check just how good we are with washing either normally or the antibacterial gel which is what I use all the time (I have a bottle right here on my desk in front of me). Again, is this a normal procedure?

[Joe]

Karol, I'm so glad to hear that the training has gone well and Jenna is comfortable with PD. I do agree with her that having fluid on makes you feel like you're full.
I'll echo Richard in I've never heard of using a black light to see how well she is doing the aseptic cleaning, but it sounds like a good way to show how clean you are getting.

Best of luck!

[jeannea]

When I trained they did not have the black light. They watched me wash my hands. The mask is standard for hooking up and unhooking.

[Rerun]

uggh, I was hoping a transplant would come before this.  But, she looks calm.  That auto painter is interesting.  Never heard of it.  Blessings to her.  PD has no needles so she will do better.

     

[Jean]

Of course, she can learn all she needs to and quickly. She is a smart young lady with an even smarter Mom. Best wishes to you Jenna, I will pray that you get a transplant and it is soon.

[Grumpy-1]

   on PD.  You mentioned keeping "clean"  I was lax on that and it cost me my PD dialysis.  She can't be too clean and keep the environment clean as well.  Grumpy

[st789]

 

[okarol]

Jenna's peritoneal dialysis supplies arrived today. Over 900 lbs. of fluid, iv pole, bag warmer, masks, gloves, blood pressure monitor, scales, and other misc. stuff. Forty boxes, delivered upstairs by driver Richard, who arrived in a giant semi truck. The neighbors looked very curious.
We had changed the order a couple weeks ago to send most of the mildest of solution, but it didn't get updated so we have 18 boxes that are wrong. I wish I had realized it when he was here but the driver arrived early and we weren't awake. Ugh! I called the nurse and she apologized, and is checking to see what they can do.
Tomorrow is the home visit by the nurse and social worker.

[Deanne]

I'm following along with Jenna. My home visit is tomorrow, too. Dietician and social worker in the morning, another exchange on the cycler to make sure I have it down, then they'll send the cycler home with me and come for the home visit. I saw that Jenna is starting with three manual exchanges/day. Is she going to learn the cycler, too?

I've had a bit of a stomach ache since I started this. My nurse said my muscles need to stretch/relax a bit and I think this is probably what the pain is. It isn't the same as drain pain - I've had a bit of that, too. Does Jenna have any of this happening, too?

[okarol]

Hi Deanne,
Jenna is only doing 1200ml and has not had any discomfort, except one day when she had sluggish bowels. On draining she sometimes get a little pinch, but clamps the tube when it starts, leaving a little fluid inside.
Her GFR is still 13 and she has no symptoms like loss of appetite, nausea, fluid retention, etc. so she probably could have waited longer to start, but with the PD tube she has to keep it flowing. Not sure if she will do 2 or 3 exchanges a day.
She can progress to the cycler but I think it's good to know both well, because she can do a shorter night treatment and do an exchange during the day, which makes it more flexible. But we'll see how it goes.
I look forward to hearing how you do with the cycler at home! Good luck! 

 

[jeannea]

In a way it's probably a good idea to get Jenna started on dialysis. If you wait longer she feels worse and then it's even harder to start dialysis. You should be ok with the extra fluid. She'll be able to be flexible with what she uses. If you run out of one your nurse usually has a little extra. She'll get the hang of ordering. I hope things go well.

[okarol]

She actually feels fine. Walks all over town, to her doctor appointments and farmers market and grocery store. They say she probably won't feel much of a change .
The home visit was today. Two nurses who had trained her came and checked all the safety items and supplies. They wanted the window air conditioning off while she did an exchange and it's 101 here today! We were pretty toasty!
She will be dry at night so we need drain bags. They are going to order her Epo so we don't have to do that anymore. They also are going to give her an adapter so if she ever has to use any system besides Fresenius she can do it easily (like if she's hospitalized or something.)
She was stressed and nervous and had a little cry after they left. She did great but she's just got lots of anger. I feel so bad for her, but I believe she's going to feel better eventually, and have more control.

[Shaks24]

I hope Jenna continues to do well on PD okarol. What a brave and admirable young lady she is.

[natnnnat]

She was stressed and nervous and had a little cry after they left. She did great but she's just got lots of anger. I feel so bad for her, but I believe she's going to feel better eventually, and have more control.

Sounds like Gregory when he had to sit in the chair again for dialysis after 21 years break.  It was a huge step for him and he hated it.
  for Jenna.

[MaryD]

They wanted the window air conditioning off while she did an exchange and it's 101 here today! We were pretty toasty!

We've been told that that (and open windows or doors) are only no-nos while connecting and disconnecting.

It's good to hear Jenna is coping well with it all.