I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: myporkchop on August 25, 2016, 10:16:37 PM

Title: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on August 25, 2016, 10:16:37 PM
Hi all
I took my mum to her pd dialysis weekly flush and they told us her blood results were not good at all. She is down to 8% kidney function and her phosphorus levels were really high amongst other things. They have given her a medication for her phosphate levels but that's about it. They have a wait list of patients waiting to start pd training so my mum is almost at the top of their list due to her health. My concern is her staying well enough to wait. They think another 2weeks then train for 2weeks then start dialysis... She is starting to get really really tired now. The sooner she starts the sooner she might start to feel better.
Does anyone have side effects from pd dialysis?
Thanks
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: kickingandscreaming on August 26, 2016, 05:32:41 AM
Quote
Does anyone have side effects from pd dialysis?

Not really side effects.  I felt better and my fluids were better controlled.  I'm surprised they are so backed up where you are.  I think if I were your mother, I would get a neck catheter and start Hemo right away until the whole PD thing is more timely.  She is suffering.  You're in NZ is that correct?  Surprised that they are so slow.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on August 26, 2016, 05:42:29 AM
Hi k&s I'm glad to hear u don't have any side effects from it. Yes from nz. I feel the same i can't believe it is taking so long. I really thought we were going to see her neph today but she was busy. In the meantime the cramps are getting worse, the fatigue and muscle pain in her lower back and hips. I have read this may be caused by high phosphorus levels. Im not sure. Thanks for getting back to me x
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: kickingandscreaming on August 26, 2016, 06:30:30 AM
High phosphorus can be quite "silent" too.  What is her phosph. reading?  A lot of that should be handled fairly well with phosph. binders with her meals.

Really surprised NZ is so slow, given that everything I read about PD in NZ sounds very ahead of the curve.  Your mom's experience doesn't quite fit.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: Simon Dog on August 26, 2016, 08:49:28 AM
Does anyone have side effects from pd dialysis?
The big side effect is peritonitis.   The most important thing covered in training will lbe  the infection control procedures.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: Fabkiwi06 on August 26, 2016, 10:23:29 PM
I haven't had any side effects. I think the biggest risk is infection (peritonitis, exit site, or tunnel infections), but I haven't had any problems with that. They teach you pretty clearly how to take all the precautions to prevent that from happening.

I agree, if mom is feeling that poorly it might be worth getting a neck or chest cath and getting hemo started ASAP. It's not ideal, but I had to basically do that and it's not too horrible - especially if you're symptomatic it can help with those greatly. Plus, starting PD will be much easier for both of you if she is starting to feel better - and you won't have to rush through the training to get her started on dialysis.

I think the anticipation of dialysis is worse than the actual treatment. Once you're sitting in the chair or hooked up to the machine, it's just mundane and annoying being tethered for a few hours a day. And I remember I felt loads better after my first few sessions.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on August 29, 2016, 04:15:18 AM
Thanku k and s.. We got told nzwas very advanced also re getting people trained she doing it for themselves. They keep saying in Christchurch where we live they can only train 2-3 people at a time but she is getting up there in terms of her deteriorating health. I rung them today to say she is getting itchy around the dressing site, still experiencing lower back pain and asked about the medication they gave her last fri. The nurse said just go take this script to a pharmacy and take 3times a day with food. I had to ask what it we and why she needed it. Itis aluminium hydroxide a phosphate binder. Don't know her levels but they said it was very high. We didn't even know what symptoms does high phosphate levels cause etc
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on August 29, 2016, 04:22:45 AM
Thanks simon and fab kiwi.
I don't know why they won't offer her the neck or chest cath? As u say we have air 3-4weeks to wait that includes the training time and that is pushing it i think. Every week she sends to deteriorate a little bit more and sometimes more serious. It is touch and go at the moment.. She is looking forward to starting to feel better ave we can't wait either. I think they get worried about her severe copd and how her chest infections affect her perhaps that's why they won't offer the chest hemo? I'm not sure. Just so frustrating
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: Charlie B53 on August 29, 2016, 05:25:11 AM

During my PD training I asked about if they train more than one patient at a time.   NO   At least at my clinic they will only train the one patient plus supporting family members so to be more able to ensure complete understanding of each measure and the importance of following procedure to minimize risk of infection.   You will also learn the importance of blood pressure, how it can change with hydration, over-hydrated, under-hydrated.  How this will affect your decision on which % solution to use for that day dialysis.

It may seem like a lot but it is very important you understand.   It just requires attention.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on August 29, 2016, 02:13:38 PM
Thank you Charlie there will be a lot to learn but we will get there. She doesn't want me there so the time as she finds me annoying sometimes by the amount of questions i have. So i will just play it by ear when she needs me to come or not. Just can't wait to get her started on her pd






sp mod Cas
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on September 07, 2016, 07:22:59 PM
Hi all,

so we went to get my mums catheter flushed yesterday and asked when will she be starting the training? the answer was "we are not sure, maybe next week or maybe the following week". soooo frustrating as she needs to be on dialysis now.
the other thing is no once have we been offered anyone to talk to about how to get your head around starting dialysis for the rest of your life. what should i do? should I ask to see a psychologist or someone? I don't know. I am sure the hospital staff are getting sick of me :(
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: Fabkiwi06 on September 07, 2016, 09:14:27 PM
 :banghead; That's really frustrating. Have you been in touch with the people at your training clinic or are you just dealing with the hospital? Once you're at the clinic with your regular team, you will get a lot of that information. Are you able to reach out to them with questions before she starts?

When I was in the hospital when I first started, I had to constantly remind them I was probably supposed to be on a fluid restriction (nobody mentioned that) or that there were foods I shouldn't eat on my dinner plate (also nobody mentioned that). All my initial information came from the internet. Thankfully, digging around this board, you can probably find someone going through almost the exact situation you're wanting information on.

The best thing you can do while you wait is make a list of all your questions and concerns and use the internet to its full advantage. Dr. Google is sometimes a quack, but sometimes does have decent medical information. Write everything down, even the stuff that might seem dumb. Just don't start any routines or supplements or anything before talking to your neph.

Hang in there. Hopefully it'll be closer to one week instead of two.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on September 08, 2016, 02:50:23 AM
Thanks fabkiwi. We go and see the training team once a week as they flus her catheter. I don't want to feel like I am pestering them all the time, I think I ring them once a week at least (without my mum knowing). I asked her today if she wanted to talk to someone about what it is going to be like? How to get her head around starting dialysis? The food/fluid restrictions? So many questions. My mum told me today, ' you are the one with the problem, not me'  :) I thought I was trying to help. I know she is anxious though.

I will keep reading the NET, you are right I think we get more support from this site and more info from google.

Thank you x
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on September 08, 2016, 02:52:12 AM
p.s fabkiwi: I can't believe you have had to be the one to tell the hospital staff about your fluid and food restrictions. Good thing you are on to it.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: justagirl2325 on September 08, 2016, 06:24:28 AM
I used to think that way too.  They're health professionals.  The "experts."  Telling the hospital staff about dialysis fluid restrictions and diet and is standard practice.   The first time husband went to the hospital for something the first thing they do is hook up an IV bag...which is only there to deliver drugs hours later.  So why hook it up 4 hours early and dump an entire bag of saline into his system, now he has to dialyze that out.  Aggravating. 
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: kickingandscreaming on September 08, 2016, 07:08:35 AM
I think this reinforces that each of us needs to be our own advocate.  No one else is really watching out for you.  But I have to say, MyPorkChop, that I am not impressed by the care your mom is getting.  Her team seems to be pretty cavalier about what she's going through.  On the other hand, it does seem that you have more issues about this than your mom.  She's an adult.  It's great that you're a support for her, but it might be that you are more support than she needs, right now.

I think dialysis staff should undergo dialysis.  Then they would know what the rest of us experience.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: Xplantdad on September 08, 2016, 07:05:56 PM
I used to think that way too.  They're health professionals.  The "experts."  Telling the hospital staff about dialysis fluid restrictions and diet and is standard practice.   The first time husband went to the hospital for something the first thing they do is hook up an IV bag...which is only there to deliver drugs hours later.  So why hook it up 4 hours early and dump an entire bag of saline into his system, now he has to dialyze that out.  Aggravating.

Just know that you have every right to tell them not to hook up saline that will have to be dialiyzed out later...Only use enough to get the IV in and flushed...and for the actual IV meds. Like what was said above...you have to be an advocate for yourself...or for the one that you are caring for.    :thumbup;                 
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: Charlie B53 on September 08, 2016, 07:24:04 PM

I know what you mean about staff pushing IV fluids to most everyone in-patient.  I will have to remember to start questioning how much and WHY as it seems like they are trying to make me P.   And I can't make much of that no matter how well hydrated I am!
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: Fabkiwi06 on September 08, 2016, 08:41:43 PM
My mom was (completely understandably) really anxious about my whole situation. I think in some ways, it's easier in a sense for us who are actually going through it because we actually go through it. We feel the differences and fluid retention and have to deal with the diet and the treatments and the pills and all of it. In my personal experience, the lack of knowing what is going on is WAY worse than what actually is going on.

Mom came down to stay with me for the first week and a half I started, but she still couldn't be at every single treatment or appointment where I got a lot of information. It drove her crazy. And to be brutally honest, I'm glad she wasn't there for a lot of it because then I'd have to be trying to explain to her that I knew (sorta) what I was doing. I finally got my neph to let her in for one of them so she should see and experience and ask her questions. I think that helped.

The waiting is horrible. And I think that as a caregiver and a loved one, it's more horrible because you have even less control and input in to what is going on.



p.s fabkiwi: I can't believe you have had to be the one to tell the hospital staff about your fluid and food restrictions. Good thing you are on to it.

At first I was surprised too, but as I thought about it I wasn't. Especially with hospital staff, they all clearly cared about their patients but they can't be experts in every single situation. I was in the hospital twice back to back. The first time I was on the "renal related floor", so the RNs had a pretty good understanding of what to do. The second time, I was just on a sort of "non life threatening" floor, and they didn't really have the massive amount of back knowledge on all the nuances of dialysis patients. It wasn't too difficult overall... they just had to constantly be reminded that I wasn't going to pee large amounts so they didn't need to be alarmed and call in bladder scans.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: KatieV on September 09, 2016, 08:51:07 AM
At first I was surprised too, but as I thought about it I wasn't. Especially with hospital staff, they all clearly cared about their patients but they can't be experts in every single situation. I was in the hospital twice back to back. The first time I was on the "renal related floor", so the RNs had a pretty good understanding of what to do. The second time, I was just on a sort of "non life threatening" floor, and they didn't really have the massive amount of back knowledge on all the nuances of dialysis patients. It wasn't too difficult overall... they just had to constantly be reminded that I wasn't going to pee large amounts so they didn't need to be alarmed and call in bladder scans.

That's a little surprising for me.  My hospital doesn't have a renal floor, I'm in "general population".  But the nephrology team is always in the loop no matter what issue I'm in for.  They are the ones to set my diet and fluid restrictions.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on September 10, 2016, 12:06:34 AM
I think this reinforces that each of us needs to be our own advocate.  No one else is really watching out for you.  But I have to say, MyPorkChop, that I am not impressed by the care your mom is getting.  Her team seems to be pretty cavalier about what she's going through.  On the other hand, it does seem that you have more issues about this than your mom.  She's an adult.  It's great that you're a support for her, but it might be that you are more support than she needs, right now.

Hi K&S I totally agree with you. I think I do have more issues than my mum  :) that made me laugh, because you are totally right. I think I need to back off sometimes. So thanks for being straight up with me, I appreciate it. Plus, I am not impressed either by the care she is getting. The staff are pretty good, but it seems so frustrating that we are a small country, and small city compared to the rest of the world and yet we don't have enough resources.

My mom was (completely understandably) really anxious about my whole situation. I think in some ways, it's easier in a sense for us who are actually going through it because we actually go through it. We feel the differences and fluid retention and have to deal with the diet and the treatments and the pills and all of it. In my personal experience, the lack of knowing what is going on is WAY worse than what actually is going on.

The waiting is horrible. And I think that as a caregiver and a loved one, it's more horrible because you have even less control and input in to what is going on.

That is so true Fabkiwi, the waiting is horrible, and yes that is exactly what it feels like, having no control makes me more anxious. Let alone what my mum is feeling. Thanks for your support.


I know what you mean about staff pushing IV fluids to most everyone in-patient.  I will have to remember to start questioning how much and WHY as it seems like they are trying to make me P.   And I can't make much of that no matter how well hydrated I am!


I used to think that way too.  They're health professionals.  The "experts."  Telling the hospital staff about dialysis fluid restrictions and diet and is standard practice.   The first time husband went to the hospital for something the first thing they do is hook up an IV bag...which is only there to deliver drugs hours later.  So why hook it up 4 hours early and dump an entire bag of saline into his system, now he has to dialyze that out.  Aggravating.

Just know that you have every right to tell them not to hook up saline that will have to be dialiyzed out later...Only use enough to get the IV in and flushed...and for the actual IV meds. Like what was said above...you have to be an advocate for yourself...or for the one that you are caring for.    :thumbup;                 

Gosh, I never thought about IV fluids and monitoring that too. So much to remember and think about now.

Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: Simon Dog on September 10, 2016, 06:17:10 AM
Quote
My hospital doesn't have a renal floor, I'm in "general population".
You make it sound like a prison.   I guess it is.

I was on a renal floor for my hip transplant at a major big city teaching hospital.   Even so, I repeatedly ran into residents who thought it was a good idea to order transfusions for a transplant candidate even when it was possible to ride out the post-surgical anemia without them.   (I was alert and oriented enough to refuse these when ordered).   The senior docs (surgeon and hemo guy) understood and worked with me on this issue, but the message never made it to the residents.

You can't assume everything will run on autotpilot and all the right things will be done when you are in the hospital.  You need to be all over your care team like a cheap suit.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on September 13, 2016, 04:13:00 AM
Yay we finally found out today my mum will be starting her training for pd dialysis next Monday. The days sound long 8am-330pm mon to friday for at least a couple of weeks. The last two days have been really busy with all different hospital appointments which has exhausted her. What an enormous process u all go thru especially when your not at all 100%. I think u are all incredible.
Mum had another iron infusion today. Every time she goes to get that done it brings back sad memories of when she went thru chemo many years ago as its right next door to the cancer ward. She has gained just over 2kg with i believe water weight or retention and it is noticeable with her breathing as she is really short of breath. We tried to go for a little walk today but she couldn't make it very far down the road and we had to turn back. I really hope one she starts to feel better from dialysis she will be able to walk again...

Another thing she is really struggling with only drinking 1 litre of fluids a day. How do you manage that? We got told that because her blood sugar levels have been high that can make you more thirsty. Its such a battle.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on September 13, 2016, 04:19:53 AM
Also I'm pleased i read your posts a few days ago as today when they couldn't find my mum's veins to do the iv they were going to make her drink 1 litre of fluid and wait half an hour then try again,  they were also going to give iv fluids. I told them she can't have too much fluids due to her kidneys. Phew, so pleased to have read all of this info before today.
So thanks everyone
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: kickingandscreaming on September 13, 2016, 05:09:46 AM
Hopefully, when she begins to draw the excess fluid out with PD, she will be able to take in more fluids.  But that is very individual and also depends on how much she is still urinating.   It's very important for her to control her blood sugars.  If blood glucose is too high, it can impact how well the PD fluid is working to pull off fluids.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: Charlie B53 on September 13, 2016, 05:42:00 AM
........... 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?   
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on September 13, 2016, 10:27:46 PM
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
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: kickingandscreaming on September 14, 2016, 05:23:25 AM
Quote
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).
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on September 14, 2016, 03:14:01 PM
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
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: cassandra on September 15, 2016, 02:58:00 AM

   :grouphug;       :grouphug;


Love and strength, Cas
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: Charlie B53 on September 15, 2016, 06:13:51 AM

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.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on September 15, 2016, 03:17:49 PM
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
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on September 15, 2016, 03:29:55 PM
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.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: Charlie B53 on September 15, 2016, 07:13:42 PM

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.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on September 16, 2016, 01:48:35 AM

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


Funny  :)
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: Charlie B53 on September 16, 2016, 06:01:16 AM

But TRUE!   It's something about 'Guy' genes.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: Fabkiwi06 on September 16, 2016, 09:43:29 PM
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.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: Charlie B53 on September 17, 2016, 05:57:50 AM

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.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on September 17, 2016, 10:16:58 PM
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.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: kickingandscreaming on September 18, 2016, 04:54:09 AM
Good luck tomorrow.  So glad the day has finally arrived.  Hope all goes smoothly.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: Simon Dog on September 18, 2016, 07:57:25 AM

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
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on September 19, 2016, 03:48:15 AM
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
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: kickingandscreaming on September 19, 2016, 06:34:36 AM
700ml today, tomorrow, the world!  Keep it coming.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: Charlie B53 on September 19, 2016, 06:38:57 AM
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
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: DayaraLee on September 19, 2016, 12:13:09 PM
So glad to know that things are moving forward! Here's to your mom feeling a bit better each day!   :2thumbsup;
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: Fabkiwi06 on September 20, 2016, 12:16:11 AM
Yay!!  :bandance;  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.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on September 20, 2016, 12:57:33 AM
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 :)

Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: Charlie B53 on September 20, 2016, 06:00:28 AM

Great to hear of positive progress!
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: cassandra on September 20, 2016, 11:03:53 AM
Nice to hear some good news!

Love, Cas
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: LorinnPKD on September 20, 2016, 12:35:07 PM
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 :)
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on September 20, 2016, 09:35:54 PM
Thanks for the well wishes :)

Day 3 - was a little bit stressful for mum and she contaminated her catheter again, so they quickly fixed that. Then she accidently prepared the cold bag of dialysis rather than grab the warm one. Just little things, but the nurse was concerned enough that he thinks sending her home tomorrow is a bit too quick and wants her to keep coming back to learn until she has it perfect.
My mum was feeling a bit down on herself, but they reminded her this was only Day 3 and there is 2 weeks allocated to her to train and it is not a race to learn.
Deep down I think she is quite relieved about not being rushed (me too), but the days are sooo draining for her, her energy level is very low and she is really tired.

She will get there :)
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: Charlie B53 on September 21, 2016, 05:06:46 AM

Practice, practice, practice.  It will get old and boring before she is finished.   She WILL make mistakes.  But it is far better to make mistakes because they tend to make us remember what NOT to do.  There are no short-cuts.  Everything MUST BE done in order and without contamination to ensure she stays infection free.

Two weeks will go by rather quickly and it won't be so long that she will dread the training.

Give her time, she will get it right.   Patience pays off.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: kickingandscreaming on September 21, 2016, 06:23:56 AM
When I was learning PD, everyone laughed at me, but I'm glad I wasn't swayed.  I made a highly-detailed step-by-step write  up in my own words of every single part of the set up and break down procedure.  I hung the paper where i needed to do PD and used the "script" as a back up so I didn't feel like I had to hold ALL the details in mind all the time.  I did the same thing when I learned the cycler.  It wasn't long  before I didn't need to refer to it at all, but at least it was there if I had a "senior moment" or brainjam.

And, BTW, they laughed, but now offer a copy of my script to their other trainees. So hah hah!
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: Kathymac2 on September 21, 2016, 10:19:57 PM
I still remember being taught sterile technique as a nursing student. I got yelled at in front of the class by my instructor for placing the screw top from a bottle of sterile saline face side down on the sterile field which contaminated everything. It was just nerves. Overtime the process becomes second nature and it becomes easier to remember. You do always have to pay attention and not get distracted when using sterile technique.

I think your idea of writing everything down is a good one k&s. I'll probably want to do that too so I can have my notes to refer to until I'm comfortable with the process.

Kathy
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on September 22, 2016, 06:41:46 PM
That is a great idea the step guide. They have given my mum instruction sheet to follow but had to cut the chart in half, number them etc as every time the nurses leave the room she would fall off to sleep and forget which step she is up to. They suggested she use a peg and clip it to the chart that comes next so when she wakes up she just has to find the chart that the peg is on.
Day 5 she is doing so well, only once she contaminated but every step she is doing really well. So proud of her.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: Charlie B53 on September 22, 2016, 07:44:08 PM

Practice pays off.  It won't be long, she will have it under control.   The clip for a place marker is a great idea.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on September 22, 2016, 09:29:07 PM
Practice sure does pay off :) Hopefully once she starts the proper dialysis treatment she will be less sleepy and have more energy.
I don't blame her for being sleepy at the training tho as they are long days and early morning starts.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on September 24, 2016, 11:53:48 PM
.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: kickingandscreaming on September 25, 2016, 04:14:22 AM
When it rains, it pours.  I hope you can all get through this unfortunate bump in the road with no major consequences for your mum's health.  It's a lot to deal with and laden, I'm sure, with very difficult emotions and memories.  I don't understand what his partner stands to get from putting you all through this.  Some people just like to sue people. Very sad.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on September 25, 2016, 02:27:57 PM
I agree k&s nothing to gain what so ever. We will get thru this.
Back at training today, they think she will be able to go home tomorrow and start proper dialysis which will be great :)
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: Fabkiwi06 on September 25, 2016, 05:51:22 PM
Big squeezes to you and your family. That's a difficult situation no matter what the other circumstances are. I'm going through my own stupid legal drama right now... I completely sympathize. Even the things that should be very simple are made 20 times more complicated when lawyers are involved. Hopefully it will be resolved easily and quickly for everyone involved.  :cuddle;

One step at a time. Mom is on the mend and she is getting the treatment she needs. And, even better, it sounds like it's slowly making a difference. This too shall pass.

Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on September 25, 2016, 06:04:58 PM
Thanku fabkiwi, u are right this will pass then we can get on with our lives. I hope your situation works out well for u too xx
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: Simon Dog on September 25, 2016, 10:51:29 PM
Even the things that should be very simple are made 20 times more complicated when lawyers are involved.
When dealing with divorces or estates, the legal problems tend to get solved when the lawyers see the pool of money about to run dry, leaving the client with crabs and icewater.
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on September 28, 2016, 04:06:00 AM
Home now doing dialysis. It is a lot different being in your own home than the clinic. She hasn't noticed a difference yet but soon i hope. Discharge from clinic next week all going well :)
Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: Charlie B53 on September 28, 2016, 06:47:22 AM

In my first two weeks on PD I took off just about 40 pounds of water weight.

Mom needs to keep wearing the support socks to keep excess water out of her legs.  Keeping that fluid circulating helps make it come off during dialysis.

Once she gets a lot of that excess of she will begin to notice how much better she feels.

Title: Re: The waiting to start dialysis is so frustrating and worrying
Post by: myporkchop on October 02, 2016, 02:58:04 AM
Thanks Charlie :)