First Day of Dialysis

[PKDSTGV]

Hi everyone! Monday is my first day in the chair and I was wondering what to expect? I'm pretty nervous and scared, but information makes me feel better. Thanks!!!

[billybags]

PKDSTGV Welcome to the site  Husband is on PD but there are lots of people on heamo will give you the low down.

[rsudock]

Go into the clinic early you will have to sign paperwork and may watch a video. Afterwards you will be escorted to a scale and your weight recorded. Next stop to your machine and chair. They will put a BP cuff on you and take a standing, then sitting blood pressure. After that they clean your arm and stick the needles in one at a time. Take a breath you can do it!!

Stuff to bring: headphones, laptop, blanket, airplane pillow, book, crossword puzzles, water bottle, cell phone, and anything else to keep you entertained.

Hang tough!

xo,
R

[boswife]

great stuff rsudock    I was thinking that mabie PKD....your still using the cath??  At least you wont have to start right off with the needles which sort of eases you into it.  But!! you'll be so glad to be using your fistula? graft? soon as that cath becomes a hastle soon.  OUr center was great and friendly which is such a pluss at this point..  I actually miss the techs and friends we made while there and i do hope your clinic is welcoming and helpful.  Let us know how it goes 

[PKDSTGV]

Thanks for the info and suggestions. I made a list and will look like I'm moving in when I get there tomorrow! lol I have a functioning fistula so it will be needles for me on the first day. They're starting with an 18 gauge and then moving up to the 15 gauge. I will be transitioning to home hemo with NxStage, but I have to sit the chair until my equipment comes in! I've been preparing myself as much as anyone can, for the past few months but it's so nice to know what to expect on the first day. Will I feel ill from the dialysis process? How tired will I be afterwards? I'm not driving myself because I want to see how I feel afterwards, but I'm hoping by the start of week two I'm able to manage getting there and back on my own. Will they numb my arm first? This whole needle thing stresses me out.......but I'm not going to be a baby about it, I know many people here are going thru it as well and everyone had their "first" time. 

Just as a side note....I really want to cry, it's so sad knowing that I'm at this point already, it seems just like yesterday when I was diagnosed with PKD. I know I will be emotional tomorrow, I just hope I bounce back quickly and get my head straight so I can dialyze to live and not live to dialyze.

Thanks again all! Wish me luck!

Tami

Diagnosed PKD 1988- Age 21
Transplant List Mayo and Emory 2010
Upper Arm Fistula 2010
Dialysis Start August 15th, 2011

[jbeany]

Here's my story of my first day, in excruciating, sarcastic detail...

http://ihatedialysis.com/forum/index.php?topic=2004.msg27718#msg27718

[Cordelia]

Cry, if it makes you feel better-don't fight it.  Lord knows I've done a lot of it in the past. I have PKD too and I'm on hemo.

I hope tomorow goes well for you     

[Pam]

A week before I started D I had a meeting and met the staff, signed all the papers etc. at that meeting they gave me a scrip  for Emla cream to numb my arm it really works. I hope you decide to do buttonholes. Mine were started the 4th week and I've been using them for 18 months. You will have to ask them to start them. I don't know why but very few units don't push them. If it weren't for this site I wouldn't know a thing about buttonholes.
On my first day I told them I wanted the best tech they had. The RN sat with me the entire time. Told me step by step what was going on and what the alarms etc ment. I started to get a head ache after about 1 1/2 hrs and they stopped pulling fluid.Dry weight  is the tricky part. I have days that I'm wiped out and tired but not sick.
The most important thing is to be as educated as you can. Ask them a thousand questions! This is just my opinion but I think the more you know and the more questions you ask the better care you will get.

Good luck hope your first day goes smoothly.
Pam

[Ang]

if your a bit freaked by the needlees, using a numbing agent about 90 minutes before d, as long as the needles go where you've put the cream, should'nt feel much

[boswife]

Your in my prayers tonight and want to send you some peace and comfort with it all.  It is a big step but soon, like others said, it'll become your new normal.  We're nxStage users too(hubby the on on the D) and there's lots of info here on that too.  Well,    heres wishing you a great start tomorrow and come let us know.  Im glad your having a driver to start.  Some do great right off and some take time to adjust.  Nice to see a familiar face anyway       and   

[Riki]

I don't need a script for Emla cream.  It's behind the counter, but I can still buy it.  It's pricey, though.  It's around $10 for the 5ml tube and the patches (only 2 patches in the box) and it's around $50 for the 30ml tube. I go through one 30ml tube every month and a half or so.

I like the patches.  I think they're really neat.  You just peel the back off them and stick them on, no messy fingers from spreading the cream around. If I ever have the money, I plan on buying 10-12 boxes of the patches, and leaving them at the unit. I think they'd be great for those who are just starting to use the fistula, and are only going to be using one needle.

[rsudock]

patches sound like a good idea!

[MooseMom]

Awww   I'm going to be in exactly your position in the not too distant future, so I really feel for you.  I can understand entirely what you must be feeling.  I'm wondering how well you are sleeping tonight.  I've been crying for a long time now, so I can just imagine what it will feel like when that first day finally comes.  You hear from people whose first day was just awful, where everything seemed to go wrong.  And then you hear from others who discovered that the anticipation was much worse than the reality and that everything went without a hitch.  It is such an enormous change in your life, and there's nothing that can truly and completely prepare you for it.  All the information in the world will not give you a crystal ball in which you will be able to see how your body will cope.  But knowing that you will be transitioning onto NxStage does give you so much control over your treatments, so if you can just hang onto that thought, than your time inclinic is temporary.

Please come back asap and report to us all how your day went.  We all will be eager to hear that you're OK.

[Riki]

I don't remember my first day on hemo, but then, I was so ill, I was lucky to have survived the infection that put me there in the first place.  I hadn't dialyzed in 2 days, and up to that point, I had dialyzed every day for nearly 5 years.  I know that my first hemo was on a Sunday, and it was the Sunday before Christmas, which was a Thursday.  I don't remember anything between that Friday, when I had the central line put in and the PD cath taken out, and Christmas morning.  My first treatment at my home unit was New Year's Eve.  I slept through that treatment, but I think it was mostly because I had been transferred from the hospital in Halifax to the hospital in Charlottetown and made the trip by ambulance.  It was a long, bumpy ride, and we didn't get into Charlottetown until after midnight, and I was in dialysis at 9am.  I did get to open Christmas presents when I got home that afternoon, though.

[RichardMEL]

Wondering how that first session went???

[boswife]

was just searhing for this thread and hoping we had heard something...  Hopfully soon 

[billmoria]

  it is not as bad as your mind thinks it will be. button hole is the way to go. i never used anything to numb my arm; best in my mind to just get used to the needle.    all the best to you.

[PKDSTGV]

Hi all! It's been a rough week, to say the least. I started anther thread about the experiece, but I wanted to update everyone here.  You know, because I'm like the luckiest person in the world.....NOT.....my first day in the chair just went supper......(sarcasm). Actually, I was infiltrated right off the bat and the worst thing abou it was the tech didn't realize that it was infiltrated until it was bad.   We pulled that needle and the RN came over....after some hesitation on her part, she got me cannulated and hooked up......the dialysis process was fine, they started me out at a rate of 200 with the goal of bring my weight down from 73.3 to 73.....and actually, in the end I dropped to 72.5 without any problems.

When I went home I applied ice to my arm, but it was pretty swollen and sore so on Tuesday I went by the Vascular Surgeons office to have them look at it (I was scheduled for a fistulagram today and wanted to make sure that was sstill a go). He said it was okay to proceed with the intervention and to switch to heat for the swelling. The heat worked so much better and on Wednesday, it was still swollen but not as painful.......and then they infiltrated me again! Twice! So I went home to my heating pad with dialyzing!

Today, I went to the Vascular Surgeons office for my fistulagram. The Angio Tech came to talk with me before my procedure and saw my arm (she was a dialysis tech for years prior to going to Angio tech). She said it was the worst infiltration she had ever seen! The doc came in to look at it and he was without words. He decided right then to rest the arm, place a catheter and do the fistulagram in a week and a half. He said he's surprised they had any problems because it's a great fistula......however he did add that sometimes with new ones, there are complications like this. He was calling the unit to talk with the staff so we'll see how that goes. I don't want to be an ass to people there, I'm a nurse and I understand, but I can't have them destroying this fistual either.

Now I'm home, worrying about the cath and the risk for infection....so I'll be paranoid for the next few weeks until the fistula is okay to use again. I don't want them to pull the cath until they've accessed the fistula succesfully at least three or four times. Anyway, that's my update......pretty sad, I know. I'm trying to keep my chin up, but it's hard!! Man this crap sucks!!

Tami

[Brightsky69]

OMG!   your poor arm!
I don't know how you guys on hemo do it. I have been on dialysis twice and it was PD both times. I only had to do hemo for very short times and then I had the cath in my neck area.

[MooseMom]

Oh dear Lord...that's awful.  I just can't believe it!  Yes yes yes.,..you need to do everything you can to keep them from destroying your fistula.  Oh Tami, I am so very very sorry this has happened.  It will eventually be resolved, but for now, it is well and truly sucky.  I would be interested in knowing what your vascular surgeon is going to say to the staff.  What is he going to tell them...go home and practice your cannulation skills on an orange?  Actually, maybe that's exactly what he will say!

Keep us posted on this because I am really very interested on what the staff will do to protect your fistula.  Now comes the obvious question...do you think you would consider learning to self cannulate?

Edited to add;  OK, I've been thinking about this all evening, and I told my husband about it to illustrate that you can be well prepared for D and do all the stuff you need to do to stay healthy, but it can all so quickly go to hell in a handbasket because some tech can't do his/her job, and the next thing you know you've got a cath in your heart on your very first week of D, so what's the next 5 years gonna be like, blah blah blah.  My husband is an attorney...NOT a trial attorney or anything litigious like that..., but he did wonder if what happened to you could be classified as "unreasonable" and negligent.  Since your vascular surgeon was "without words" and plans to talk to the clinic, I have to wonder if you could sue for negligence.  Now, I know that sound overreactive, but when you think about it, is it "reasonable" to expect the clinic staff to infiltrate you to the point where you are injured and your fistula is rendered useless?  You are now at added risk for having to have a catheter.  How can staff get away with this?  And that's not a rhetorical question.  How many "complications" are acceptable?

[PKDSTGV]

I've seriously considered my options and that's been on the list. The problem is that I want to do home hemo with NxStage and they are the ONLY ones close to me that offer it! I can do home hemo with FMC, but the NxStage is portable and traveling is important to me. I had hoped my FMC clinic would get authorized to use NxStage, but half way through their process, FMC pulled the plug.

I don't want to piss them off and end up with worse problems, but at the same time, I can't afford for them to ruin this fistula!!! You're right though, I can't afford to be passive about this either. There are other DaVita's and I do believe that they offer NxStage as well, but they are 45 minutes away, without Atlanta traffic.

I'm beside myself over this and I'm scared......and in pain. I don't understand how this kind of thing can happen! My concern is that a lot of new fistula's are infiltrated so I'm not sure if these infiltrations are outside of the expected infiltration rate under the circumstances?

[MooseMom]

I certainly understand wanting to keep your clinic cooperative since you want to do NxStage.  You will need their support, so I can see why you wouldn't want to antagonize them.

I was about to write that I understand that a certain "infiltration rate" is to be expected, but then I stopped to consider, "Why?"  Why do we "expect" to be infiltrated?  Why this, "Well, sh*t happens!" attitude from both staff AND patient?  But what caught my eye was the reaction from your vascular surgeon and his nurse.  Both seem to be so very shocked by the state of your arm, and the fact that the surgeon is actually going to call the clinic makes me think that what happened to you is well beyond any reasonable expectation.

I think you might want to start looking for another clinic that offers NxStage.  I know that there are Atlanta traffic problems, but if your fistula is destroyed, you won't be doing NxStage any time soon!  If the only clinic you find is just too inaccessible, then so be it, but it might be worth it to start investigating.

What do you think the surgeon was calling the staff for?  Really, I'm very curious about this.  What he has to say to them will be hugely influential.  If HE, in his considered professional opinion, thinks you have been unreasonably harmed, then you have a reason to litigate if that's what you want to do.

[PKDSTGV]

He was trying, in a politically correct and polite way, to tell me that it was a "technique" problem.....his words. He asked if I had the most experienced person available sticking me and I told him the RN was sticking me and she said the only other person she could get to do it would be the Clinic Manager. He knew I was reluctant to point blame because I have to go back there tomorrow, but he was crystal clear that he felt it was the clinic's fault.....as did the Angio/Dialysis Tech. I think if I had been irate, he would have been all over that too. And I think he was calling the clinic to jump their ass (to be blunt). It's hard when you're a nurse because I know mistakes happen and I don't think it was malicious, but I do think that they aren't experienced. As a matter of fact, they are a new clinic and their numbers (as posted on here) were really pretty bad for morbidity......but there was only data from 2010 so if you take that into account, I don't think their outcomes were really as bad as the data showed.

I don't know.....all I know is that I'm scared to go back there tomorrow. I think I'm going to call the DaVita that's further away and see if they do home hemo (that's been another issue as well, lots of DaVita's with Nxstage, but limited number that do home hemo).

Thank you for your advice and concern. I really appreciate knowing that I'm not flying in the dark! I wish my husband was more educated about all of this and then he could raise hell and I wouldn't look like a troublemaker. I know that's kind of lame, but I've already dealt with so much crap, it would be nice to not have to always do it alone.

[Brightsky69]

When I first started dialysis (hemo for a short time) back in 1990. All of the dialysis techs at my clinic seemed very skilled. I figured they were all nurses.
Then when I had to start dialysis again (hemo before my 2nd transplant 2010) the dialysis techs all seemed as professional and knowledgeable as fast food workers.    No offence to those who work in the fast food industry. I began to wonder if any of them even had a high school diploma. My how things have changed. 

[mcclane]

Once you start on blunt needles, bring something in to pass the time.

When I first started training on CVC, i brought in my psp so the 4 hours wouldn't seem so long.  They had tvs there, but i wound up playing games for most of the 4 hours.  I also took a nap too (to try to acclimatize myself to the noise of the dialysis machine) PS : I had a bed during training, so that helped !

btw, when I first started sharp needles (for buttonhole development), my entire left bicep bruised, something like yours but way worse.  I told people that I got the bruise from a UFC match 

home hemo is the way to go; that is what I'm doing right now (the hospital called is nocturnal hemodialysis, i don't always do it at night though).