How would you introduce someone new to dialysis - first treatment?

[RichardMEL]

I know this has been discussed all over, but I had an experience yesterday that brought things into a bit of focus.

I had just been hooked up and was doing my thing when one of the nurses in my unit brough around a young lady and her mother and explained that the girl was starting dialysis for the first time today. I think the idea was that I was about her age (it turns out she is a year younger than me) and perhaps it might help alay her nerves a bit to talk to someone young who was on the machine and aparently doing OK since she was a bit nervous/anxious (and I remember MY first time, and I didn't even have my mum there to hold my hand).

So I talked to them for a few minutes along with the nurse and then she had her first session in the chair next to mine (and yes, the cheeky nurses were doing a bit of match-making... she was even referred to as "Richard's Girlfriend" at one point, which got a bit of a laugh all around). During her session we also talked a bit, and I think I also helped the mother relax a little bit too - I think it was almost more difficult for her to sit there and do nothing watching this happen to her daughter.

So seems I will have some company for a while at least... so what would you guys suggest to do, or say or whatever to someone just starting in-unit hemo???

[Joe Paul]

Well, its no doubt she isn't feeling to good if its her first treatments, so Id tell her it takes a time for most people to notice a difference in how they feel. Try and have a good sense of humor about all this too, I think a good attitude is part of how we feel. Those 2 things are what come to my mind. And, if you didn't already, invite her to I.H.D. and join up, you know this is the best place to come for true answers.

[charee]

I haven't started yet its nearly time , just reading everyones posts here has helped me heaps also getting in the chat room were you can talk and ask questions , so by talking with her and answering her questions would be a great help plus tell her to join IHD.

[angieskidney]

I would hope that you wouldn't talk the WHOLE time she is in the chair about dialysis. Talking about everyday stuff will take her mind off of her dialysis and pass the time fast! Talking about things you like to do you might find you two have things in common outside of health!

[Epoman]

I would hope that you wouldn't talk the WHOLE time she is in the chair about dialysis. Talking about everyday stuff will take her mind off of her dialysis and pass the time fast! Talking about things you like to do you might find you two have things in common outside of health!

  Best advice so far, do give her advice and answer her questions, but do not bombard her with 3 to 4 hours of dialysis talk. Change the subject and help get her mind off of dialysis. Take it slow with her.

And of course invite her to IHD. 

- Epoman

[AlasdairUK]

When I re-started dialysis the worst thing for me was not knowing if I would be able to cope and not knowing how I would feel. Would I be able to continue as "normal" as I had been. So just doing the first session in itself would calm her nerves and seeing people doing well on dialysis always helps rather than seeing sickly people on the machine next to you. I started in an acute bay where they start everyone and to coin a phrase "I see dead people", needless to say that did not calm me down straight away.

[RichardMEL]

Oh do not worry guys... I talked almost about other things, but perhaps with a bit of a dialysis context in mind.. eg we talked about what work she did (working in a dept store) and she gave me a look ("typical male") when I asked if it was lingerie (he he he)... and we talked about our footy teams (the season starts soon) and so on...

I did think about IHD of course, but to be honest with all the nurses hovering around etc I thought I might save that for another time (and not sure if she is an internet user or not but will find out I am sure)... I am not sure how the nursing staff might feel about directing her here... we'll see (hey she may even be lurking here, who knows... well if so you know who I am !!).

Oh and lucky for her she finished and left before I started to feel a dreaded cramp coming on..the last thing I would have wanted (apart from my own selfish desire to not cramp!) is for her to see someone aparently doing ok  suffer.. that would freak you out totally... Luckily I didn't cramp, but it was a bit touch and go... and she didn't see.. so all good... and everyone else in the unit were doing pretty well on Tuesday.

To be honest what I wanted in this thread was more general suggestions for what you would say to anyone starting or you come across for the first time rather than my specific situation. Ty for the responses so far!

[angieskidney]

To be honest what I wanted in this thread was more general suggestions for what you would say to anyone starting or you come across for the first time rather than my specific situation. Ty for the responses so far!

I would just give advice then. Like telling her to make sure she brings in a warm blanket. And her own headphones. A good book to read. A mini walkman (music player)?

Tell her how to prevent cramps, why not to drink a lot (if she doesn't pee anymore), why phoshate is bad and potassium too.

I don't know .. there is soooo much to talk about to a new patient! It all depends on if she really is all that interested or is in denial as a LOT of patients are at first.

[RichardMEL]

No she'snot in denial.. we went through food but you know I didn't want to tell her all the "you can't.." stuff on the first day when she has so much to take in.. plus she is seeing the dietician in her 2nd session anyway... In fact a nurse was going through stuff you can't have and made it sound like no never ever ever... and I said "look I don't want to countermand what a medical person or dietician tells you, but it's more a guide that youshould avoid the (for example) high potassium stuff.. but you can have a bit of things you like.. just keep it realistic.. so instead of a block of chocolate, a few squares... and keep an eye on the bloods"

I guess I didn't want her to think the life she had is totally over.. sure she has changes ahead and restrictions.. as we all doo.. but I didn't want her to go out thinking "crap.. this whole thing so sucks and has so many 'you can't' attached toit"

I didn't really talk about cramp though it was mentioned... and yes I told her and her mum how important fluid was, but I thought she has so much to handle first time... go into that stuff later.. if she asks

and yep, I showed her my mp3 player (well ipod) and said that is the hardest thing about dialysis.. keeping occupied.. so suggested books, watching the tv, a music player/mp3 player, radio etc...

so tried to mix it up. oh and not bug her for the whole session. Just talked to her for maybe 10-15 minutes out of 2 hours. I guess she knows she can talk to me (or nurses) if she wants well I hope so!

[Amanda From OZ]

The best advice i would give is to know when to talk to her and when not to, the most annoying thing about dialysis at the hospita or clinicl was people talking to you when all you wanted to do was be on your own!!  I use to pretend to be asleep so some people wouldn't talk to me  i know it sounds mean but sometimes talking when you are not feeling well , and especially when you first start dialysis isn't always the best thing!

[RichardMEL]

great point Amanda. I know the last thing I would do is want to intrude. Indeed I might just keep it cool.. if she wants to talk to me next time (assuming we are near eachother) then she knows she can I guess.. well I hope so anyway. I certainly don't want to be "that annoying geek" at dialysis I want to be "that kinda ok geek"

[livecam]

On the first day the patient is probably not going to want to hear alot from other patients.  They are in the middle of information overload just learning about the procedure, reading the dialysis and Medicare manuals,  getting their bearings, and having the living beejesus sucked out of them for the first time.   You could wait until the next time or maybe the time after to remind the patient that dialysis is temporary and that she will be getting a transplant.  You could bring up the idea of compliance and tell her that doing things the way the docs say is the road to getting that transplant.  On my first day of dialysis my neph said "we're going to get you a kidney."  I will tell you that I believed that about as much as I thought I was going to win the lottery that  Saturday.  Well, he wasn't kidding but I would not have believed it THAT day.

[AlasdairUK]

On the first day the patient is probably not going to want to hear alot from other patients. They are in the middle of information overload just learning about the procedure, reading the dialysis and Medicare manuals, getting their bearings, and having the living beejesus sucked out of them for the first time. You could wait until the next time or maybe the time after to remind the patient that dialysis is temporary and that she will be getting a transplant. You could bring up the idea of compliance and tell her that doing things the way the docs say is the road to getting that transplant. On my first day of dialysis my neph said "we're going to get you a kidney." I will tell you that I believed that about as much as I thought I was going to win the lottery that Saturday. Well, he wasn't kidding but I would not have believed it THAT day.

Glad you got the kidney PS. how did the lottery turn out that Saturday 

[Sluff]

I just want to add that I think this is an awesome thread.  Thanks Richardmel for starting it. 

[livecam]

Alasdair...I don't know...I got the kidney...who needs the money?

[jbeany]

Things I've found out about dialysis that the doctors and nurses don't tell you -

You have the right to determine your own dry weight and fluid goals.  It's a guessing game at first, so you have to bear with the trial and error at the beginning, but once you've got a handle on it, you should do it yourself.

You can have them stop pulling fluid anytime you want.  It's your treatment.  It's up to you.

Although it does get a bit easier after the first couple of weeks, you can expect to feel worse after a session than you did when you went in.  Figure 4 or 5 hours to start feeling like normal again, especially at the beginning.  "Washed out" is a completely inadequate term some days.

The chairs are not made for comfort at all, and there isn't anything anyone is going to do about it.  Try every combo of pillows and blankets you can imagine to find the best possible position.

Doctors and nurses like "one size fits all" approaches.  They give the same diet, meds, and fluid restrictions to everyone.  Reality is closer to "one size fits most."  Some patients quit peeing, not all.  Some patients have to have severe fluid restrictions, not all.  Some patients have to follow every bit of the diet, not all.  Find out what your labs should be, and adjust your life accordingly.  Learn to do what works for YOU.

Bring lots to do.  Mindless time wasters like solitare or tetris can be your best friend.  Books are fine, but bring two in case one turns out to be boring.  I've started taking a laptop loaded with games, and the time goes a lot faster.

I doubt you'll want to be the one to tell her this, Richard, but being a young woman on dialysis has it's own particular set of problems once a month.  If you are female, find another woman on dialysis to give you tips on coping with the hormonal fluid gains and problems caused by the heparin.  My doctors and nurses were clueless; the other women on this board were a tremendous help to me.

[angieskidney]

Things I've found out about dialysis that the doctors and nurses don't tell you -

You have the right to determine your own dry weight and fluid goals.  It's a guessing game at first, so you have to bear with the trial and error at the beginning, but once you've got a handle on it, you should do it yourself.

You can have them stop pulling fluid anytime you want.  It's your treatment.  It's up to you.

Although it does get a bit easier after the first couple of weeks, you can expect to feel worse after a session than you did when you went in.  Figure 4 or 5 hours to start feeling like normal again, especially at the beginning.  "Washed out" is a completely inadequate term some days.

The chairs are not made for comfort at all, and there isn't anything anyone is going to do about it.  Try every combo of pillows and blankets you can imagine to find the best possible position.

Doctors and nurses like "one size fits all" approaches.  They give the same diet, meds, and fluid restrictions to everyone.  Reality is closer to "one size fits most."  Some patients quit peeing, not all.  Some patients have to have severe fluid restrictions, not all.  Some patients have to follow every bit of the diet, not all.  Find out what your labs should be, and adjust your life accordingly.  Learn to do what works for YOU.

Bring lots to do.  Mindless time wasters like solitare or tetris can be your best friend.  Books are fine, but bring two in case one turns out to be boring.  I've started taking a laptop loaded with games, and the time goes a lot faster.

I doubt you'll want to be the one to tell her this, Richard, but being a young woman on dialysis has it's own particular set of problems once a month.  If you are female, find another woman on dialysis to give you tips on coping with the hormonal fluid gains and problems caused by the heparin.  My doctors and nurses were clueless; the other women on this board were a tremendous help to me.

That is amazing advice!! Thanks for that!! 

Would you mind if I printed that out for people or anything? That is really REALLY great advice that can only come from experience and not the docs/nurses/techs

 

[jbeany]

Copy and print away, angie.  I don't mind.

[del]

Hubby always talked and joked with people to help take their mind off dialysis.  Sometimes he would have the place in an uproar.

[Joe Paul]

Hubby always talked and joked with people to help take their mind off dialysis.  Sometimes he would have the place in an uproar.

Thats what I'm talking about 

[Rerun]

I think you should ask her & her mother to meet you sometime (on a day off) for coffee or something, so she can sit up like a normal "human being" and then she may have some questions you can answer and then you can present IHD to her.

[Sluff]

I think you should ask her & her mother to meet you sometime (on a day off) for coffee or something, so she can sit up like a normal "human being" and then she may have some questions you can answer and then you can present IHD to her.

Great idea Rerun.   

[Epoman]

I think you should ask her & her mother to meet you sometime (on a day off) for coffee or something, so she can sit up like a normal "human being" and then she may have some questions you can answer and then you can present IHD to her.

Good idea, but leave the mother home. 

Also Richard, why do you think the nurses will be against this site? Because of the name? You do know we have MANY nurses as members right?

- Epoman

[glitter]

Also Richard, why do you think the nurses will be against this site? Because of the name? You do know we have MANY nurses as members right?

- Epoman

Excuse me for interjecting into your question-but I too am hesitant to give out this web-site AT the  dialysis center because when I have mentioned it to nurses or techs they are condescending,they hate it that I get information from here,they seem to resent my husband and I learning so much here.I DO still give it out though,I have gave it to several nurses who expressed interest in learning buttonhole,and I will say its the younger nurses who are accepting of this web-site-the older ones are more critical(without coming here and seeing for themselves)

[kimcanada]

I would say to her...

I know that you think that dialysis is very bad, but it will be OK, you will get more energy once you start your treatments, and probilly won't sleep so much,  the diet is doable, and I will be here if you need me, 3 days a week in the chair right beside you.

BTW there is a great site  http://ihatedialysis.com. 

Kim