The waiting to start dialysis is so frustrating and worrying

[Charlie B53]

........... If blood glucose is too high, it can impact how well the PD fluid is working to pull off fluids.

I was formally pronounced 'Diabetic' six months after starting PD.  It took another 6 months before the Dr's decided that I needed to start taking insulin.  Within a month I had my blood sugar average under 120.  The lower blood sugar resulted in an almost immediate 10 pound weight loss as the greater difference between my blood sugar and the dialysis solution caused more excess fluid removal.   

Who knew?   

[myporkchop]

Hi K&S, her blood sugar levels have been really high lately as opposed to having lows (as you might expect with kidney failure). We went and saw the diabetes nurse yesterday and they are looking at changing her insulin pens as it does not appear that she is getting enough insulin.
I heard that the dialysate solution for PD is full of glucose? I wonder how they will be able to control her sugar levels/ insulin when she actually starts PD.

Regards

[kickingandscreaming]

I wonder how they will be able to control her sugar levels/ insulin when she actually starts PD.

She will probably need to tweak her insulin then once she sees how the PD solution affects her.  The PD solution is dextrose and at pretty small percent (1.5, 2.5, 4.25).

[myporkchop]

Thanks for the reply. Her symptoms of restless legs cramps and itchy skin is getting worse and she hasn't slept well in over 4 days. She feels lousy all the time and irritable. I was told we just have to wait it out until the training next week but sounds. like she needs to be on dialysis now. Of course she does i say. Grrrrghh

[cassandra]

          


Love and strength, Cas

[Charlie B53]

Getting so close.   My training was pretty intensive, only one week, every day.   Not much of a graduation ceremony.  I got to take my Cycler home with me and get connected.  And have every day since.

Patience is difficult, but the goal is in sight and getting oh so close now.

Is she faithfully taking her water pills and wearing the support socks?   Both do help a lot.

[myporkchop]

Thank you Cas.

Thank you Charlie - yes she is taking her water pills and sometimes wearing the support socks. She has to be trained to do the manual exchanges first which they say takes about 2 weeks, then at a later stage if she wants to do the overnight exchanges she would have to go back for more training. The cycler's are given to those who work full-time, or have commitments during the day that require them to be free. They tell us they are in hot demand, so she would be at the bottom of the list to have one of those as she does not work etc.
It would be nice to do it all at night though. Maybe one day.

Patience is difficult. But you are right it is getting so close. Thank you

[myporkchop]

Hi K&S this is our girl Suzie (in the picture)  unfortunately she passed away a couple of years ago now, but still very close to our hearts.

[Charlie B53]

Oh yea, you're right.  That Cycler training was AFTER I had been on Manuals for a little over a year.  I'm a Guy.  My memory is about as long as.................................................................











my nose.

[myporkchop]

I'm a Guy.  My memory is about as long as.................................................................
my nose.

Funny 

[Charlie B53]

But TRUE!   It's something about 'Guy' genes.

[Fabkiwi06]

I was also trained first on manuals (2 weeks sounds about right) and then it was about a month an a half until I got my cycler - would have been sooner, but Christmas happened...

You're almost there! Mom will start feeling better after a day or two of starting - I remember almost instantly feeling better overall.

[Charlie B53]

Initial training and doing manuals for even a short time give you the necessary experience how and what to do in case the power goes out long enough that you can still take care of your dialysis.    It really made me appreciate my Cycler once I did get it.

[myporkchop]

Hi Fabkiwi and Charlie, we are almost there Can't wait for her to start feeling better. I didn't think about power cuts, so that is a good thing they teach manual exchanges too.
Day 1 of training starts tomorrow - yay!! I never thought we would be looking forward to doing this.
Someone from my work asked me "what is your mum training for" - I said "netball" mum laughed when I told her.

[kickingandscreaming]

Good luck tomorrow.  So glad the day has finally arrived.  Hope all goes smoothly.

[Simon Dog]

Initial training and doing manuals for even a short time give you the necessary experience how and what to do in case the power goes out long enough that you can still take care of your dialysis.    It really made me appreciate my Cycler once I did get it.

Depending on your needs, you might now (or eventually) need a daily exchange as well.  When I was on PD, I did one exchange at the office during the day and ran the cycler at night.






sp mod Cas

[myporkchop]

Thanks k and s,
Day 1 done. Wow what a process. They were really good not to over load her with too much info and did 2 exchanges within the 7hrs we were there. One dwell for an hour and the second dwell for 2hrs.she was really unwell today with fluid retention again, about 3kg and very short of breath. Couldn't walk from the car into the hospital needed a wheelchair. She tried her hardest to be alert this morning but because of how much she was struggling they wanted to let her dwell longer to try and remove some excess fluid. After the first exchange it was so exciting watching the scale and seeing how much excess fluid it drained, they couldn't wipe the smile off her face. 700mls excess in total today. She became unwell again in the afternoon.
She doesn't how she isgoing to limit her fluids to 1litre it must be so hard.
Day 2 tomorrow and see the doctors which is good we haven't seen them in 5 weeks and i definitely thinkshe isdue for a review.
Thanks for reading x

[kickingandscreaming]

700ml today, tomorrow, the world!  Keep it coming.

[Charlie B53]

Limiting fluid intake to only one liter can be very touch for those that have never had any limits.    Fortunately PD isn't near as strict about fluids as most of those on Hemo, so don't be too touch on her.

I myself drink ice water.  I keep adding add so there is always enough I can easily tip my cup and get a piece of ice along with a sip of water.  It takes a minute to melt on my tongue and really seems to help curb the thirst better.  Otherwise I would just chug far more water.

Amazing weighing the drain bags, seeing how much excess fluid comes off.   Who would have thought it possible?    It can easily take a week to get a substantial amount out of her, but it won't be long and she WILL be feeling so much better.

Very glad to hear that she is getting started.

Take Care,

Charlie B53

[DayaraLee]

So glad to know that things are moving forward! Here's to your mom feeling a bit better each day!   

[Fabkiwi06]

Yay!!    I'm sure it felt like this day would never come and now it's finally here! Glad mom is on the mend and you got to go with her. Hopefully it's helping ease your anxiety about the situation as well

It's HARD to limit fluid - I was always one to constantly have water or coffee on me at all times. You get the whole "8 glasses of water a day" hammered in to your head for so long, that it becomes a tough habit to break. Ice was my best trick to control my fluids. I'd just fill a big cup to the brim and sip it as it melts. Since water expands when it's frozen, a full glass of just ice is less fluid than a full glass of water. Sucking on the cubes still is more satisfying than drinking a glass. Frozen fruit was also a nice treat - I was partial to a handful of frozen grapes or berries. Gum and rinsing with mouthwash sometimes also helped.

If mom has a smart phone, look in to water tracking apps. I used one called Waterlogged. It let me put in my target amount. Instead of trying to meet the goal, I always tried to stay under it. I also have a handful of my "favorite" cups (coffee mug, to go tumbler, and regular glass) that I've measured how much my average drink in there is. So, I know my coffee is about 10oz, the glass and tumbler are about about 12oz.

And once they get her fluid retention down and everything is routine and good, she should be able to drink more. It's a month or two of some real discipline to get to your new normal, but once you're past that there is a lot of flexibility as long as you're smart about it. I'm on PD and not on a fluid restriction any more - which is much nicer in the hot weather.

[myporkchop]

Thanks so much for the messages.

And thanks for the tips re ice/water, that sound like a great idea.

Day 2 - It was so amazing watching her go through the whole process with her nurse standing beside her talking her through it. Yesterday she wasn't very alert due to all the excess fluid and she couldn't keep her eyes open for too long, but today was much better.
On the third exchange she accidentally touched the sterile part of her catheter then attached it to the bag. The nurse took over then and had to replace the solution because he said it would be contaminated now. She was almost in tears about it, but was reassured that it was a good thing to do this mistake while in training so that she could hear how to trouble shoot if this should happen again.

The doctor came in for 2 seconds, barely spoke to her and left without asking us if we had any questions. The nurse was a good advocate for her though and went and asked the questions we had. She is crippled with pain in her hips, itchy and cramp/restless legs. Nothing was offered. Basically, the doctor said she needs to be on dialysis NOW, so the sooner she is trained the sooner she can have the full dialysis and hopefully these symptoms will improve a little. They are thinking about sending her home on Thurs lunch time and will come to her house to watch her do it in her own home. Then she will need to go back friday morning and drain in front of the nurse.

This morning she was smiling from ear to ear, excited about doing it herself. So pleased she is finally training.

They are training up 3 nurses as the demand for PD dialysis training is high, that is why we had to wait 2 months to start. Apparently there is a huge list of people waiting to just have the operation.

We asked about swimming, and they said it is a absolute No No in pools/ hot pools etc, but said she could swim in the beach (too cold right now), but would just have to wear a colostomy bag or something like that, but they will explain more when she thinks she may swim.

Can't wait to see her with more energy and just being herself again

[Charlie B53]

Great to hear of positive progress!

[cassandra]

Nice to hear some good news!

Love, Cas

[LorinnPKD]

Thank goodness for those helpful nurses! 

I've been following your story and am delighted to hear of your mom's progress.  Sending good thoughts her way