First Day of Dialysis

[MooseMom]

PKDSTGV, of course it wasn't malicious, but it is still unacceptable.  And of course "mistakes were made", but that doesn't reduce the severity of the harm done to you.  My worst fear, and I think yours is too, is having that cath and getting an infection.  All of that could have been avoided if the people sticking you had been more skilled.

It's a money problem as much as anything.  Dialysis providers want to make money because they are profit-oriented like any other business, so what do they do?  They do what they can to cut costs (no one in this country seems to want to invest in ANYTHING anymore; we seem to have lost sight of the difference between "spending" and "investing", but that's another rant), and labor is going to be one of the first things whose cost they cut.  They don't want to spend the money to get the best people and to train them and then to pay them a good wage.  That might be a fine way to do business if you own a lawn service but NOT if you run a dialysis clinic where people's lives are at stake.

I don't understand the problem with finding a Davita clinic with NxStage that lets you do home hemo.  I thought the whole purpose of NxStage was to DO home hemo...are you saying that there are a lot of Davita clinics who have patients using NxStage inclinic?  I'll be eager to know what you find out, so let us know, OK?

As for your husband, I don't think he needs to be educated about "all this" to raise holy hell.  Anyone taking a look at your arm and hearing your story would thing, "I'm gonna go kill someone!"   The arm speaks for itself.  And that's what husbands are for, to raise holy hell on your behalf.

[Big E]

Hi PKDSTK and welcome to the wonderful world of dialysis.   What you're going through sounds a lot like what I experienced when I first started D over a year ago.  My first day I had a huge infiltration, but when the alarm kept going off they would just shut it off without really checking what was wrong because another patient was having an emergency, and I didn't know enough to say anything.  I ended up with a chest catheter which kind of gave me the creeps because I was afraid it would get infected.  It was a rather stressful two months, but once the catheter was removed my access functioned well with just a few minor post-treatment bleeds at first.

I guess the moral of the story is -- hang in there.  Things will get better.  Also, once your access is functioning, tell them to start buttonholes.  The needles go in easier with less bleeding.
 
It will get better!

[PKDSTGV]

I made the decision yesterday morning to not go back to that unit. I just lost any trust I had in them and if I don't feel like they know what they're doing, then why put myself in any more jeopardy. I contacted my previous neph (she doesn't do dialysis) and we got me set up at a different unit, with a different company on Tuesday morning. I know the doc who runs that unit and I know Emory's reputation so while it's further to drive there, my piece of mind is worth it. Hopefully I will be able to start my home hemo training as soon as this arm is better and we can pull my cath. I just can't believe that I've started this process with so much drama! Couldn't the drama god's spread it out a little bit?

Thanks for all your posts, suggestions and support. I really appreciate it!

Tami

[MooseMom]

Tami, several of our members go to Emory, one being noahvale.  Here is a link to his thread about that clinic.  Apologies to you, noahvale, for jumping in on this discussion.  Maybe you can tell Tami a bit more.

http://ihatedialysis.com/forum/index.php?topic=19692.msg367390#msg367390

Good for you for changing clinics.  I'm sure you hated having to do it, but I think you will be much happier.  I am pretty confident that it will be worth the extra investment of your time up front so that in the long run, you will have access to the best treatment for you.  Good luck, and tell us how it all goes.  I'm very interested to know.

[malaka]

I have a question.  My nephro finally admitted that my Stage 5 diisease was going to result in dialysis or transplant.  He's recommending I train for home dialysis, which I agree with.  BUT...... how does a home dialysis patient know how to adjust things so I'm not sucking out too much water, electrolytes, or leaving in too much sodium, creatinine, etc?   Is is better to start at a clinic where feedback would seem to me to be more readily available?  Thata's my question.

I'm asking because I remember all the fooling around with blood tests I needed when I started on thyroid pills years ago and all the adjustment in dosing of insulin when pills no longer worked to control type 2 diabetes.  I felt bad for long periods of time, and I'd prefer to avoid that if possible this time around.

Or do clinics keep you at least until private insurance is exhausted once you start with them?   

[M3Riddler]

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

Sorry to hear about the experience. But unfotunately, this is far to commoon ffor those starting dialysis for the first time. 
Tip#1... If you are new to dialysis and this is your first few treatments... DO NOT LET A TECH INSERT YOUR NEEDLES....
 Insist upon a trained RN that has experience.
This is the last thing you need done to your fistula. Your fistula is very fragile when first using it. I hear of this happening all too much. 

You have the right to deny a particular person put your needles in despite what they may tell you.
Have you thought about sticking yourself?  I know it sounds harsh and stressful, but once you do it, you will feel the freedom and not let anyone else touch it.

The brusing will go away. Why did they decide you needed a fistulagram?  Anytime you are infiltrated, your arm is more than likely going to look like that. It will take a few days to heal.  Are they starting you out with 17guage needles?  Also, make sure they run you at a lower blood fllow for a while until your fistula gets used to higher pressures.
Also, I would look into getting buttonholes. This is where you use the same two spots over with dull needles. Needles slip right in. They may say that they dont use them, but if you learn to stick yourself, again, this is  your right to learn to stick yourself.

One thing I suggest is to learn as much as you can about dialysis and the machine. Pay attention to how they set it up and program it. Read your chart on a regular basis. Make sure they wirte in your chart that they infiltrated you.
Learn what your labwork means and what the normal ranges of your blood tests are. And by all means...do not be afraid to question your medical team including nurses/techs and even your nephrologist.  You should all be working together as a team.  Do not accept that your blood results are "ok" or "good". Ask for a copy of them and learn what they are and how each result affects you.

Have they ever informed you about Home Dialysis?

[lmunchkin]

Malaka, when my husband was first diagnosed, we chose PD to start with.  Home hemo was not available at that time.  That being said, I now wish home hemo had been available because we do it now at home with nxstage and it is so worth it.

Now it is my understanding, if you are going for a transplant, then PD is a much easier type dialysis. They say it is much easier on the body than hemo, but honestly, it requires so much sterile conditioning that the slightest slip up, well you got an infection!  It worked for us 5 years and we were greatful for that, but hemo at home on NxStage just worked for us.

Going in-center to learn more about it is just not going to fly, IMO. If we had gone in-center when he had to have D. he probably wouldnt be alive!  Im sorry folks, but that 1 year after PD failed for him and he went in-center, was just awful!  And if I were in Novel mood, I could list a lot of reasons why we hated it, but for now, just learn to do it at home!

Do you have a partner, malaka? That will be extremely important for backups.  Most clinis that train this stuff will prefer that you have another person to learn with you.

Look, the worst that could happen is that you cant learn it, and they send you In-center anyway.  Try it, what have you got to lose?

PK, smart move on your part!  Once that fistula matures and grows, you are going to be glad you went that route!!!! I understand the fear of infections w/ cath, but just be mindful of what u are doing, and u should be fine.

Tami
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Have they ever informed you about Home Dialysis?
[/quote]

It would be so worth it if you did D at home, IMO.

lmunchkin     
 

[malaka]

Thanks.  Since I'm using insulin to control Type 2 diabetes, I'm not needle phobic.  But I was concerned about inability to recognize signs of trouble doing it at home.  That sort of happened to me when my sugar went out of control thanks to steroids.  I was sick and didn't realize it, and ended up in the hospital for several boring days.   

[PKDSTGV]

Well, I've been trudging along with my in-center hemo. I'm so glad I switched to the place I'm at now, but I have been having lots of problems with low blood pressure. They switched me to an F160 dialyzer, are giving me 500cc bolus of normal saline before I start, I'm off all b/p meds during the week (and hypertensive as hell!) and we're not doing ultrafiltration. Yesterday I started having edema in my feet and ankles, first time for that, so we're gonna have to do something different, but what no one seems to know right now.

I was cleared yesterday to start accessing my fistula again.....single needle to start then work my way up to 15 gauge over the next two weeks. I'm hoping that with the route change some of my problems will go away.....probably wishful thinking, but I've gotta keep my chin up some how! On a positive note, accessing the fistula means I get this catheter out in a couple of weeks. It will be such a relief to have it gone.

I'm approaching the one year anniversary of my mom's death so the days are getting more and more depressing. I know everyone that has lost someone has had to meet this mile marker themselves, but damn it's tough! She hated dialysis so much and I didn't know enough then to ask her the right questions. I regret that....as a nurse and a daughter....maybe I could have made things better for her if I knew what was going on. I'll never know, I guess, but I'm comforted in the fact that she no longer has to go through it and that she's happy at my dad's side.

I hope everyone has a great week.

Take care!
Tami

[MooseMom]

My mother died a little over a year ago, and I find that as time has slipped by, her death has become harder for me.  At the time she died, there was just so much going on; she had suffered so much, and it was a blessing that she was finally at peace.  But now, a year later, it feels like the trauma has just now hit me.  I think about her all the time, and I feel such a profound loneliness that it hurts to post about it.

My mom was on dialysis for the last five years of her life.  She had had abdominal surgery, and in the process, she lost her renal function.  So, I saw the ugly side of dialysis, and I saw her struggles.  So, I can understand how you must  be feeling, and I am so sorry.

I am not on dialysis yet (but on my way!), so maybe I am talking out of turn, but my own treatment for pre-dialysis problems took a good while to streamline, and it strikes me that perhaps dialysis may be the same.  I have always been told that the first few months on dialysis are the hardest, and I think you are finding out why.  This is where medicine becomes art.  Each body is unique, and it will take some time and effort and thought and experimentation to find what works best for your body.  You are obviously an intelligent patient, and I am certain that your new center will listen to you and to your concerns, and together you will all finally discover the key to your unique "lock".

That's great news about your fistula.  Having the catheter just adds to your woes, I imagine.  Be sure to post how things are going once you actually start using the fistula again.  I wish you all the luck in the world.

[CebuShan]

You have certainly had a rough road so far.
I had a cath for exactly one year.(They removed it 1 year to the day it was put in.) I never had a problem with it.
I now have a fistula that they are starting to buttonhole.
I am glad to hear that you decided to go to another clinic. I live out in the country so the closest one to me is about 20 minutes away. I would not go to that one because I HATE the hospital that is near it. My husband & I had a bad experience there and will never let them take either one of us there. So I was going to one about 30 minutes south. I liked the people at the clinic but I did have 2 problems just before I decided to go somewhere else. The first was when a tech spilled bleach (at least she said it was bleach) on me and it ate my clothes! I had holes in my shirt & pants by the time I got home!! I took photos and called the "hotline" set up for complaints. Then the visiting dr. & I got into a disagreement over my treatment. I now go to a clinic about 30 minutes east of me and am much happier. There have been a few problems but they are open to discussion and don't usually take it "personally".
Stick to your guns and don't ever just accept things just because accidents happen. If you don't like something or you feel uneasy about something, speak up!
Good luck. I hate it when people say this but: It Will Get Easier!

[MikroTikmi]

MOLLE and Maxpedition are cool, so are berets, BDUs and open carry but sometimes less is more. For example: "the less people notice you the more chance you have of making a successful get away"

Go with plain everyday hiking day packs from a cheap outlet. Buy two and replace the first when it starts to show wear and tear.