stage 5 renal failure in shock please help

[Charlie B53]

Sounds as though the Nurse is very blunt.  Doesn't sugar coat anything.  All business.  I'd be willing to bet that as a teacher she will be very thourough, spelling out every little item in great detail as she wants to be certain you learn everything needed.

Ask questions every time you have any doubt that you do not understand anything perfectly.

Many clinics want a second person, sometimes a third if available, to learn PD as there can come a day when Mother is so ill she may not be able to set up and do the exchanges herself.  If a Family member can step in and help it may save Mother from a hospitalization.

Your Nurse will soon become a very important part of MOther's treatment team.

[myporkchop]

Hi k&S yes I will be involved as long as she want me to be (she does get frustrated with me tho) I am sorry you are alone. And I am also sorry about your beautiful dog. I read your other post. They do mean the world. I hope everything works out for you and helping your darling dog to get better. You keep strong.

Thanks Charlie B53, I am sure we will have tons to learn from her. I will ask questions thanks.

Regards to you both

[kickingandscreaming]

Thank you for your kind words. I hope she gets better too.  But she is old and her days are numbered--as they are for all of us.

[myporkchop]

Hi all, just an update,

We went and saw the specialist yesterday, as they wanted to be 100% sure my Mum wanted to go on dialysis. They were very good, and said now that she has made her decision we can get on with it.
She was sad to hear she cannot swim anymore when she starts peritoneal. We just have to wait now to hear when the operation will be. Also, they now want her to have weekly bloods and possibly start EPO.
Sounds positive so far

[kickingandscreaming]

She was sad to hear she cannot swim anymore when she starts peritoneal.

She can swim in salt water or in well-chlorinated pools.  Just not fresh water.

[myporkchop]

Hi K&S that sounds good. I will let her know.

I read the neph letter yesterday and it basically said: both specialists are worried that they do not think she will cope with dialysis, given her recurrent chest infections and COPD and said dialysis may or may not help her??
What made her decide to go for it was chatting to all of you and your encouragement. But it is a worry. They also said due to her large abdomen it may be tricky to get the catheter in, and given she has to have the procedure done by local anesthetic.
Oh gosh, I really hope it helps her and she will cope. They did say tho that if she does chose to go through with dialysis, they will support her all the way.
Just a worry thats all

[myporkchop]

Hi all
I just thought i would send a update. So my mum has decided to give the dialysis ago. She is as i speak in theatre having her catheter put in her stomach for pd. We went to see the pd nurses yesterday and they were shocked with the new amount of questions i had 30 in total i think. Most of what i asked were ideas and questions from a lot of u in ihd. Others were practical. But none of them were about his to deal with this mentally. My mum was upset last night and just prior to going into surgery that all this is happening to her despite all her other health complications and now having to have a catheter sticking out of her stomach and on dialysis for the rest of her days i didn't know how to comfort her with that one, just to say if she didn't then her time here sound be cut short. I was so sad for her. I am waiting for the phone call that she is in recovery and i can go and see her.
They were not going to do her procedure under general anaesthetic due to her risks of breathing and heart etc. So we fight it sound be local, however they told us just before she went in that they would have to do general as would be too tricky fir her under local.
How did all of u cope with getting your head around this? She is not a candidate for a transplant.
Thanks everyone

[myporkchop]

Sry for all the spelling mistakes and wrong words i am using my phone to type and gave fat fingers. Oh i can't wait for the phone call x

[Fabkiwi06]

It's been 9 months since my kidney's failed and 7 since I started PD. It was a rough first few months - you have to initially go into survival mode to power through all the rapid changes, and then it catches up with you. There are still days I wallow in my misery due to the way life works. I constantly struggle with seeing my cath through my shirt or being so full of PD fluid that I look second trimester pregnant. BUT, it's better than the alternative. You just take it as it comes...

I will say, at this point in the process I do feel physically better. I've gotten a routine down for my treatment. For the most part, I have a great team at the clinic. My lab results are pretty ok. It's taken some time to get here, but I did. It's like putting together a puzzle when you're not sure what the picture is supposed to be and someone threw out half the pieces so you need to make them yourself.

[myporkchop]

Hi Fabkiwi, we are from NZ too
I bet it was a rough first few months on PD. It sounds like such a huge ordeal to go thru. I hear what you mean about seeing the catheter through your shirt, it is noticeable on my mum also. But as you say, it is better than the alternative alright.
I am glad you are feeling better and got into a routine.  I can't wait for my mum to feel better too and that the routine will just become normal.
Gosh we were chatting today that 2 months ago she was about ready to give up, because that was what she was basically encouraged to do due to all her other health complications. It wasn't until coming on this site that she changed her mind, after encouragement from all of you to keep fighting.

So thank you all from the bottom of our hearts xx

[kickingandscreaming]

MPC, it's a huge adjustment, but it is doable. After 6 months of doing PD, I have settled into a routine.  I wish I didn't have to have this routine, but I do and it isn't the end of the world.  I'm older than your mom and I don't have a helpful daughter (or anyone else).  And I doubt that anyone looking at me would have the slightest idea that I have this strange plumbing under my clothing.  Unless I tell and show them.

[Charlie B53]

The actual fitting shows through my T-shirt, looking like I have something trying to hide.   I tell most everyone I have a cathater, a lifeline I use nightly that keeps me alive.  I am living on borrowed time as I would have been DEAD three years and a month ago without Dialysis.

I am Thankful for every day that I am still here and I am no longer SICK.

It would be so nice not to have this thing, or have to connect to that machine every night.   But it is a very small price to pay for keeping my health, and my life.

I hope to keep doing this for a very long time.   Barring infections.   So far, so good.

Stay careful, keep those hands CLEAN!

[myporkchop]

Thank you K&S, your amazing going through all of this on your own. And yes I agree none of you would want this routine at all, but I like what you say 'it isn't the end of the world'.
You have done amazingly well and are an inspiration to my mum and I. Thank you xx


Charlie - that is the a nice way to put it re the catheter, it totally is a lifeline. Gosh borrowed time or not, you all have inspired my mum to go on dialysis. She was adamant 2 or so months ago that she wouldn't do it and just go the conservative route, because that is what she was encouraged to do from the nephs to maintain her quality of life over quantity. But after joining this and talking to all of you she changed her mind and now has the catheter in her tummy ready to start the training. Unbelievable. It still seems that you can still have quality of life on dialysis.
As you say it is a small price to pay for keeping your health and life.

My mum is soooo worried about not having her hands clean enough etc. I said to her, the dialysis nurses who will be training her will not let her go home to do her own PD dialysis until they are confident she can do this on her own.

[Charlie B53]

Wife watches the sales, buys me the pump bottles of hand sanitizer.  She keeps a bottle next to my Cycler, my computer, bathroom sink, kitchen.

I use the one next to my Cycler the most.   Bathroom second.






sp mod Cas

[myporkchop]

That is a great idea having hand sanitiser bottles every where in the house. I might start collecting now:)
I was so worried today re my mums health. She told me last night she got the shivers and was freezing cold in bed and then got really hot. When i went and saw her today she looked terrible and sick. Her breathing was really bad and i could hear her chest gurgling - thats awful copd. She had been having a good few days until today. She started her antibiotics her gp always gives her back up for when she gets her chest infections. She just takes two a day rather than three so it doesn't effect her kidneys too much. I gave her a good wash to help her to feel better. She was in and out of sleep all day. Was adamant she was not going to the doctor because she is sick of tgem. Plus she thought she is due to see the pd nurses tomorrow so will ask to see a doctor then. Oh gosh i pray everynight that she sleeps well and is feeling better tomorrow.
Take care

[kickingandscreaming]

Sorry this is so stressful for you.  Hopefully, she will come through with shining colors.  I don't know about NZ, but here in the US I get my PD supplies from Baxter and they supply all the hand sanitizer as part of my regular shipment.  I don't need to buy them.  I have a bottle everywhere I might have to handle my supplies.

[Michael Murphy]

While not on pd I can sum up my feelings about dialysis, I bought a tee shirt from cafe press that says.  "Dialysis, Damned if you do. Dead if you don't .". 
The bottom line is I am still,alive and the time spent on dialysis is a small price to pay for being able to walk in the sunshine.  18 hours a week at dialysis leaves me 150 hours left in the week to do what I want.

[myporkchop]

K&S thank you. I can't wait for it all to start for her so she can start to feel better too. She got her prescription today for the EPO injections, so hopefully that will help with energy levels etc. I have seen the bags and they are Baxter as well. So hopefully they will supply all the hand sanitizers too.

M Murphy: That is so true "Dialysis, Damned if you do. Dead if you don't ". Thank you