My mom is on dialysis

[TXPeg]

Hello,

My mom (age 81) started dialysis Aug 12, 2008 when her function got to 10 percent.  She got her graft in Mar 2008.  I have been reading this board for about a year and want to thank you for helping me understand what we are experiencing.  I wish mom knew how to use the computer so she could read and not feel so alone.  She is feeling overwhelmed, scared, angry and depressed.  I am trying hard to understand what all is being done so I can help her,  but it is a lot to comprehend. 

My main concern is that the dialysis unit is not what I expected.  I feel they lack training and are in a big hurry.  They treat us like we have been through some kind of training for this and seem agitated if we ask too many questions.  And honestly, we don't even know what questions to ask.

In these first 3 months, mom has been infiltrated 5 times.  More often than not, they have to stick her twice on one side to get it right.
Many times while taking dialysis, she experienced cramps that were so bad that she had to be taken off.  She is a tough person and has always had a high tolerance to pain, but she said that was worse than anything she had ever experienced and would rather die. 

She is a small woman and all her levels are good; she even has some urine output.  She is not diabetic or anemic and has regular to low blood pressure.  She has a dry weight of 63.0 - 64.0 and her goal is 62.5.  They usually take off less than 2.

With all that, she is feeling so much worse than she did before beginning dialysis.  After dialysis she is usually washed out and sleeps a lot between the cramping in her legs all up into her belly. 

I have talked to the doctor and he keeps telling me it takes time to get it right. 

Anyway, that's where we are......waiting for them to get it right.

[willieandwinnie]

TXPeg. Bless your heart for being there for your Mom.  Your clinic sounds like the one my husband went to, and I finally had to made a real ass out of myself in order to get them to listen. Find out who is the best tech and tell them, that is who you want to take care of your Mother. Infiltrations do happen ever now and then, but 5 times in 3 months is a bit much. I'd be getting a nurse to stick her and I'd also tell them to back off what fluid they are removing. If she is cramping that bad, then they are drying her out too much. What you Mom is going through is what I called "the cookie cutter dialysis patient" they treat and do everything the same to everyone. That is not how it is suppose to be and the doctor is a bit full of crap too, it is he's job to make sure they get it right. I hope and pray that you can get their attention and things get better for her. So glad you finally decided to join us. 

[paul.karen]

 
TXPeg,

So sad.  Nothing worse then hearing of children and our elderly going through such ordeals.

I am new here so i cant really help you out much.  But my prayers are with you and especialy your Mother.  I hope they figure it all out FAST.  No one should be in such pain.  I just started recently getting leg cramps.  Feels like it is in my Bones.  My doctor gave me a pill for it.  And they are helping alot.  Sorry i dont know the name of them.
P&K

[monrein]

  TXPeg.  There's so much info here and I hope you've found some of it useful as you try to navigate this ordeal with you Mom.   It sounds to me as if she may not  be getting adequate dialysis and they may be taking off too much fluid at times also.  Infiltrations are painful and I understand how angry we can get with whoever is sticking us but I must tell you that as a small person with smaller blood vessels it is sometimes impossible NOT to infiltrate an immature fistula.  This should get less frequent with time but if the infiltrations happen once the pump is running, rather than as they're cannulating, they might want to try running the pump at a slower rate until the vein toughens up.

All of the technical difficulties and possible solutions to them however do not change the dreadful fact that you and your family are going through this and I wish that you didn't have to.  Post often with your rants, questions or whatever and I look forward to getting to know you.   

[annabanana]

  TXPeg,  from one caregiver to another.

[Razman]

Thanks for joining. I think that every person here has at one time or the other felt

overwhelmed, scared, angry and depressed

.
So please let her know that she is not alone.   

[lola]

 

[paris]

    We are glad you joined us.  I am so glad you have been able to find answers and help her during the past year.  Information is so important and the doctors just don't tell us everything.   You are such a good daughter and we Mothers appreciate our children so much.  Please give your Mom our best wishes and let her know that people she will never know are praying for her and keeping her in our thoughts.   Maybe you can print some of the posts so she can read them and know she isn't alone in all of this.   Hugs to both of you   






paris, Moderator

[teverman]

TXPeg 

I too also just joined the board after lurking for almost a year and reading all this valuable information.  I am also here for my mom who is 74 and is scared to death about all of this.  She too has just started with the leg cramps and says they are so bad.

So welcome to you and your mom and somehow it makes it easier to know there are others around that know what you are feeling. 

Tina

[Joe Paul]

Welcome TXPeg, good to have you aboard.

[jessup]

G'day mate and 
I am a care giver too and your story rang so true and familiar with me and my experiences with Dad and his renal clinic.
However that doesn't make it okay WTF !
Stay strong for your mum and continue to be proactive and positive.
Continue to ask questions and persist - I too have experienced the "weird" looks from the clinic staff when I ask questions at every dialysis session - but our parent(s) are just that - not another sausage in a bloody factory.

My Dad isn't IT savvy either but I constantly read exerpts from this website to him - he doesn't tend to chat to other patients at the clinic as he just "wants the session over and done with".  I think it is great for him and hopefully your Mum to hear about others and their experiences whilst coping with a change in all aspects of their life with Dialysis.

My thoughts and best wishes to you both

[boxman55]

Welcome to IHD we are glad you signed up. please get the social worker to your Mom so she can get some things figured out and to give her someone to confide in. Cramps in a nutshell means they are trying to get to much fluid off. They need to back off a .5 to 1 kilo to end that misery. Also if your Mom has it in her I would deck the tech that has infiltrated her.    Request the same nurse even if it is the head nurse on duty to do the sticking. Get in there in stir up some stuff...

Boxman, Moderator

[graftgurl]

TXPeg~
What a sweet and caring daughter you are to take care of your mother so very well. I can hear that you only want the best for her and no one should have to suffer the pain she has gone thru        I only started dialysis 2 months ago but I asked tons of questions then and still do if I don't understand something. So what if they give you THE LOOK !  It's not their mother who is suffering. I, too, would give the tech a good talking to if it's the same one who infiltrates your mother. And if it is more than one, then I would insist on a nurse, even the Head nurse,placing the needles. There is really no excuse for this to continue happening. If it is a problem with the fistula not being mature enough, then they need to put a permcath in until the fistula is  able to handle all of this.

Also, she has several options to help with the cramping. You could ask them to change the "profile" on her machine during treatment. Each profile is different and draws off fluid according to different patterns. I used to be on a profile that drew the same amount of fluid continuously until the end and then it drew a little extra. Well, I ALWAYS cramped the last 15 minutes of my treatment. Well, that was for the birds and I told them so!! It would also make me angry because I wanted them to take off as much fluid as possible, but at the end they would have to add saline back in to ease the cramps. So the amount of fluid I lost was never what it should have been. I talked to the nurse (not the tech) and told her how it was making me feel and what my goal was for the treatment. Now I'm on a profile that slowly increases the amount of fluid drawn off the first hour of treatment, stays steady over the next 2 hours, and slowly decreases towards the end of treatment. They also add a small amount of saline (fluid) back in at the end to prevent cramping, but don't have to add a large amount to treat the cramping. This works so much better for me and I encourage you to have a similar discussion with your mother's nurse or doctor. They shouldn't just tell you that her body has to adjust to the way it is, no options out because that is just not true! Here is the link to part of an article I read about this and I took a copy of it to my doctor and to the dialysis center - http://www.kidney.org/professionals/Kdoqi/guidelines_updates/doqiuphd_vi.html   One of the techs was very rude, claiming I didn't know anything about it and she did. Well I tell you what, that's the last time she ever worked with me.      This is MY life on the line/your MOTHER'S life on the line.

I can see why your Mom is angry, depressed, fatigued. We all go through that at times, but when treatment isn't at it's best (or as good as it's going to get), it tears you down no matter how strong you are. Hang in there and insist on talking to someone who will work with you until it is "right" for your mother.

Hang in there and come back often for support. We're always here 
BTW, are you from TX?

[TXPeg]

Oh My Gosh! ! !  Thank you all so much for your responses and all the valuable information.  It is so nice to know that we are not alone. 

I am going to start printing out the pages and letting mom read them while she is on dialysis.  She needs to know she is not alone. 

She also will not talk to any other patients while she is there because she just wants it to be over.  She will not sleep or watch TV.  She just sits there and watches the clock and what the techs are doing.

I made her write down all the problems she is having with cramping and feeling so tired after dialysis.  I told her to put it on the tray beside her chair and tell the nurse to make sure the doctor looks at it. 

Again.......thank you all so much for your caring thoughts and prayers.

[Bajanne]

Welcome to our community!  i know I don't have to convince a longtime lurker like you that this is the place to be for information and support.  Please continue to take advantage of all this site has to offer, and keep updating us on your mother's condition.  Remember, we are family here 
One thing I can assure you is that it gets better after a while.  When I first started, I also felt extremely crappy.  But now it isn't bad at all.
Looking forward to hearing from you.


Bajanne, Moderator