The waiting to start dialysis is so frustrating and worrying

[myporkchop]

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

[kickingandscreaming]

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.

[myporkchop]

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

[kickingandscreaming]

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.

[Simon Dog]

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.

[Fabkiwi06]

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.

[myporkchop]

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

[myporkchop]

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

[Charlie B53]

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.

[myporkchop]

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

[myporkchop]

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

[Fabkiwi06]

  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.

[myporkchop]

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

[myporkchop]

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.

[justagirl2325]

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. 

[kickingandscreaming]

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.

[Xplantdad]

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.                     

[Charlie B53]

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!

[Fabkiwi06]

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.

[KatieV]

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.

[myporkchop]

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.                     

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

[Simon Dog]

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.

[myporkchop]

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.

[myporkchop]

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

[kickingandscreaming]

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.