First timer...what should I expect?

[jojosmommy]

I went to my neph. today and we decided after putting it off for a very long time, that now is the time to start dialysis.  Our decision is mostly based on the fact that not only is my function holding at 9%, but my anemia is getting very bad.  I'm feeling pretty bad, and always cold! I have PKD, and I got a fistula more than a year ago, so I should be ready to get started.  Anyway, he wants me to spend a week in the hospital to get started, and I'm thinking on starting on Sept. 27th.  I'm just wondering what I should expect for this initial week and getting started in a center after that. I'd appreciate any advice I can get (positive please, don't think I need to hear any horror stories at this point! I'm trying really hard to not freak out!)

Thanks! 

[Pam]

Hi Jojosmommy
Why do they want you to be in the hospital for a week instead of starting incenter? I started when I was at 10%. I was very tired and cold all of the time.
I've been on D for 16 mos. and have had no problems at all. I requested that the best tech did my sticking and so far she is my tech 90 % of the time. They started me out slow and made sure there was no cramping or BP issues. I've never cramped but once in awhile BP drops when I stand but it's not much of a problem.
At first I was really wiped out after treatment but that has gone away. Once I get hooked up I can sleep the whole 2 hr 45 min I am on.
Watch your diet and eat the protien.Talk to them about buttonholes.
I know there are lot of horror stories, but although IHD it is possible for your treatment to be smooth sailing.
Pam

[RichardMEL]

Yeah, I'm a bit surprised that even though you are not feeling the best you seem stable. Why not start you in center? Strange that they would want you in hospital.

Anyway what to expect? I think really try to not be too afraid of anything. It will all be a bit new to you. Hopefully they will explain what is going on, and also will start you off as gently as possible - ie: a short session first off, etc and make it as easy as possible.

Ask questions! Be informed.. and don't feel like anything you want to ask is too silly or stupid to ask. being informed is important I feel.

Most of all try not to worry. If you are in the hospital you will have the best trained folks around you and they do it day in and day out. It's very common.

I wouldn't expect to feel much better initially - you'll need to stabalise and that could take up to a few months. Not saying you won't of course, but don't be discouraged if it takes time to feel more "normal"

All the best!

[Stoday]

I was told that I shouldn't expect much initially. But I felt fantastically better after the first 2-hour dialysis. I've now been dialysed 20 times and I still haven't started to hate it!

Just goes to show that everyone's different. Maybe you'll be lucky. I'm sure of one thing — if you expect the first time to be bad, it will be!

[romanyscarlett]

Try not to expect too much from your first session. I like to think that I'm of reasonable intelligence but I actually thought I'd start to feel much better after my first treatment. 

One of the nurses very kindly pointed out to me that they don't take all the toxins off in the first run because it would send my body into shock due to it being used to having high levels of everything and they would have to gradually reduce them over time. Of course once she said this it all made perfect sense.

Definitely go prepared though. I showed up without headphones, a blanket or a snack. My first session was only 2 hours so it wasn't too bad but if it had been 4 hours I think I'd have died of boredom or hypothermia.

[Hazmat35]

I went to my neph. today and we decided after putting it off for a very long time, that now is the time to start dialysis.  Our decision is mostly based on the fact that not only is my function holding at 9%, but my anemia is getting very bad.  I'm feeling pretty bad, and always cold! I have PKD, and I got a fistula more than a year ago, so I should be ready to get started.  Anyway, he wants me to spend a week in the hospital to get started, and I'm thinking on starting on Sept. 27th.  I'm just wondering what I should expect for this initial week and getting started in a center after that. I'd appreciate any advice I can get (positive please, don't think I need to hear any horror stories at this point! I'm trying really hard to not freak out!)

Thanks! 

Hey, you and I could almost be TWINS!  I too, have PKD and had a Fistula put in about a year ago.  When I first started Dialysis, my Neph, also put me in the hospital.  The way he explained it was, that he wanted me in a "hospital setting" for the first few times, in case some unexpected event happened, that they could deal with there rather than in a clinic.  I'm glad I did, it made me feel much more comfortable.  The nurses gave me so much info on Dialysis that I was overwhelmed, but I took it all in. 

Nothing to fear, but fear itself.  After you have had your first treatment, you will feel so much better.  I was amazed after mine.  They took off so much fluid, that I could actually see the veins in my feet, and for the 1st time in years, they weren't swollen or sore. 

Good luck.  Jut make sure that when you start in your center, that you get an EXPERIENCED person.  Where are you going to be going? 

[carol1987]

HI... I am going to be starting D soon also!! I can't let you know what to expect but I can offer a  !!!

I have PKD also and my fistula was created on 4/1/2009....

I started a thread a couple of weeks ago about what to wear to D and got LOTS of great advice on what to wear /bring to D! ( i don't know how to copy a link here .. sorry)

[Restorer]

I will say that the dialysis nurses I've had in the hospital have been much nicer and more willing to talk about things, but that's probably due to the mostly one-on-one interaction, since 7 out of the 9 in-hospital dialysis sessions I had were in my individual hospital room. The other two were at the inpatient dialysis floor on the hospital, but even there I liked my nurse very much.

[jojosmommy]

Thanks everybody for the encouraging words! I feel a little more at ease about it all now.  Dr. says he wants me to start in the hospital because it takes time to adjust and they just want to keep a close watch on me.  That's fine by me.  In fact makes me feel better about starting. 

When I do go in center, I'm not sure where i will be going, but I do know that I will be getting a different doctor.  My current doctor is about an hour drive away from me and that's just too far to drive several times a week for D... especially when there are centers that are close by.  I will have to hash that out in a week or so. 

Wish me luck! 

[Epofriend]

Expect the center to be freezing - bring a blanket!
Expect the chair time to be long - bring a pillow, some entertainment, and maybe even a snack.
Bring along your VOICE and use it. If you are uncomfortable (cramping, light-headed, nauseous) speak up! The techs and nurses know what to do for you.

Changing nephs? If you like your neph, that may not be necessary. My neph does not see patients in the dialysis center. Rather, I go to his office once a month. The neph simply has to have "privileges" at the unit you use so that he/she can prescribe your care.

[Hazmat35]

DEFINATELY bring a blanket and something to keep busy with.  Something that you can do "one-handed".  My experience in the hospital was they started me @ 2 hours the 1st day, 2 1/2 hours the 2nd day, 3 the 3rd, then went to the center. 

If you know which center you will be going to, the hospital Social Worker / and Neph will set up everything for you.  He has to write orders for the center. 

And yes, BRING YOUR VOICE.  Ask the hospital staff questions, about what they are doing, why they are doing it, everything.  YOU are in charge of your treatment and being new to this, there are no silly, strange or STUPID questions.  You will never know, if you don't ask.  Again, my experience, is the more informed YOU are, the more serious about your treatment others will take you! 

Good luck! 

[gothiclovemonkey]

I agree with everything everyone has said lol
I wasnt ready when i started at all, i knew nothing about dialysis, and didnt know what a fistula was, so thats a plus for you. You will probably do wonderful, and it will probably make u feel so much better. Maybe they think hospital would be good, so its an easy transision for you?
Definately take a blanket, maybe a book or crosswords or something of that nature, Alot of people like to bring seat pillow things, because sitting there for so long can be kinda hard on ur butt lol, if ur center allows it, i like having gum or hard candy available in case i get a bit dry, because my center doesnt let u drink, but they give us ice, i cant handle ice my teeth are too sensitive.
Also, some drs prescribe some anti anxiety pills, like zanax, to help ease the transition, so u might want to consider that.
Good luck, I know it can be scary but i think some parts of u get used to it
I think the worst part really is the sitting there its boring lol so make sure u bring something to keep ur mind occupied!!! 

[AguynamedKim]

HI... I am going to be starting D soon also!! I can't let you know what to expect but I can offer a  !!!

I have PKD also and my fistula was created on 4/1/2009....

I started a thread a couple of weeks ago about what to wear to D and got LOTS of great advice on what to wear /bring to D! ( i don't know how to copy a link here .. sorry)

Here's the link to that great thread you started, carol1987.  http://ihatedialysis.com/forum/index.php?topic=19998.0  I just went to the message itself, copied (Ctrl+C) the text at the top of your browser (the http://Ihatedialysis.com/etc... part) and then quoted your statement here, hit the "Insert Hyperlink" button which looks like a little world with a piece of paper in the lower right corner of the picture, and pasted the text (Ctrl+V). 

[carol1987]

Thank you "aguynamedkim"!!

Hope everything is going well for jojosmommy!!1

Carol

[Bruno]

I'm 8 weeks into it, but I was scared stiff before my first dialysis, I truly thought it was the end of my life as I knew it and in a strange way the second statement was true. It was certainly an ending but it was also a wonderful new beginning. It wasn't anywhere near as bad as I'd imagined but that was overshadowed by how much better I felt. I felt as though my life had wound backwards until I felt as I used to before the kidney disease. So, it's not anywhere near as bad as you think it might be. But be sure to take something that will occupy your mind for your time spent on dialysis. I read the paper, always take a book keep a diary and write down every aspect of what is happening or being done to me. I make sure that every aspect of my treatment is discussed with me and reasons given in a way I can understand. I've found the nurses don't mind at all. In fact most of them seem to like being asked.

[Riki]

Some centres have blankets, but it doesn't hurt to bring your own.  My centre, thanks to a patient donation, has heated blankets. I LOVE that!!  *G*

I bring my ipod and my phone.  Some centres don't allow you to use the phone, and mine didn't at first, but they've relented.  A lof of us play with our phones now.  So, I listen to music, IM friends, post to facebook and twitter, and check email.  I sometimes take what I call "surveillance photos" of the nurses and other staff in the unit, and post them to facebook, but I only do that when I'm really bored.  Our unit has tvs, but we don't use the headphones.  They have a remote that's connected to the wall, like call bells in the hospital.  It has all the controls for the tv, and a speaker.  If I watch tv, I usually just lay it on the chair next to my head and keep the volume high enough that I can hear it, but low enough it doesn't bother anyone else.

[RichardMEL]

Some centres have blankets, but it doesn't hurt to bring your own.  My centre, thanks to a patient donation, has heated blankets. I LOVE that!!  *G*

I bring my ipod and my phone.  Some centres don't allow you to use the phone, and mine didn't at first, but they've relented.  A lof of us play with our phones now.  So, I listen to music, IM friends, post to facebook and twitter, and check email.  I sometimes take what I call "surveillance photos" of the nurses and other staff in the unit, and post them to facebook, but I only do that when I'm really bored.  Our unit has tvs, but we don't use the headphones.  They have a remote that's connected to the wall, like call bells in the hospital.  It has all the controls for the tv, and a speaker.  If I watch tv, I usually just lay it on the chair next to my head and keep the volume high enough that I can hear it, but low enough it doesn't bother anyone else.

Riki I love you! You are my kind of patient! thank you for being considerate!!!! We have exactly the same setup. They replaced these crappy old TV's a couple of months ago with really nice and big LCD TV's - big tick for that - but they replaced this (I admit, poor) wireless headphone systemn they had with them with those wall control things like you describe (must be a hospital standard product sort of thing). Now these things have headphone ports in them(which I have used) but nobody brings headphones(except me it seems) and so these patients just turn the volume way up and it's SO annoying and intrusive! Now OK I can understand some of the older patients have hearing problems and need to, I can handle that a bit I guess, but there are some who have perfect hearing, but just turn it up real loud, and I think I have better hearing than most so I find it SO distracting that it bugs me even when I'm using my own headphones to watch stuff on my laptop. I feel like asking nicely for them to turn it down a bit, but then I relent thinking that gee dialysis is sucky enough and then some jerk wants you to turn the TV down - I just figure the agro isn't worth it.. so I sit and suffer.

Yesterday for example I could hear music from ANOTHER ROOM (!) - it was Blondie "Heart of Glass" and sent me back to the late 1970's.... 

[jojosmommy]

Hi everyone.  Thanks again for all of the great advice.  I thought I would give an update on how things are going so far.  My week in the hospital was rough.  I'm kind of glad now that I started there.  My fistula infiltrated the very first treatment.  I only ran about an hour and a half before they had to stop.  So that was painful.  The next morning, they tried to use it again, but it infiltrated a second time.  So, they drug me downstairs and hooked me up with a perma-cath on day 2.  After that they dialyzed me 3 or more hours each day that week.  By Friday I was feeling pretty drained.  This week I went to the center M,W, F.  It's a new center just getting started so there is just 1 nurse and not many patients.  There are only 4 other patients on my shift.  We have TV's and have to take our own headphones, but that's not a problem.  It's pretty cold and I'm still trying to figure out the best things to take with me.  They will let us drink and have a snack since it's the evening shift.  I've had issues all week with my perma-cath.  It hasn't been flowing as well as it should be, so Friday the nurse went through my fistula to pull from and pushed back through my cath.  It finally worked a lot better.  I'm hoping within the next week or so my fistula will start being used 100% so I can get rid of the cath.  I hate this thing!   I've also felt pretty drained this week.  Very low energy and low blood pressure, ringing ears.  I'm hoping all of that will start to get better soon.  I think I would be feeling better if I didn't feel so drained. 

Thanks again to everyone for sharing your experiences!

[Riki]

Richard, I rarely use the tv. I listen to my ipod.  My best friend keeps telling me that I should take my laptop in and write while I'm there, but I told her that typing with one hand is frustrating..*L*

Jojosmommy, the decision for me to start HD took 5 minutes on a friday morning. I didn't have a fistula, so had to have a line put in.  I was on PD at the time, and had a nasty case of peritonitis. It was almost a year after that before I had the fistula put in, and 3 months after that before it was used.  They started it like you had yours, fistula was the artery and line was the vein.  They did that for 3 treatments, then switched and did the other way.  My fistula infiltrated 3 times.  Once during the beginning with the fistula/line bit, when they put the needle in to take blood.  They got the blood for the labs, but the second they pushed saline in to flush it, my arm began to burn and it swelled up the size of a golf ball.  At that point, they left it, and just used my line for 2 weeks.  The second time was about a month ago, and again, it was while trying to take blood for labs.  It did exactly the same thing, they got the blood ok, but when flushing, my arm burned and swelled up.  I didn't have a line anymore at this point, so they just sent me home and they got me back the next day and used a single needle set up. They did it again a week later.  They were trying to find a new spot to needle, and it didn't work out well.  I'm not sure why they'd try it after having the trouble they did the week before, but they did the same thing.  They sent me home and had me come in the next day and they did single needle for about 2 weeks until all the swelling went down.  There's a lot of trial and error in the beginning, and it takes a month or so to find the right balance.  I was on PD for 5 years, and as much as I liked it, and all the freedoms that went with it, I wasn't getting the same level of dialysis that I am now.  Best advice I can give, LEARN EVERYTHING!!  Don't be afraid to ask questions.  I've been doing this for nearly 2 years, and I'm still asking questions and learning things.