Do I have grounds to be upset?

[cattlekid]

I have a catheter that was placed on January 25th.  Two months later, I am having inconsistent results with the catheter.  For example, the last two weeks, I've had excellent treatments on Tuesdays and Thursdays and terrible treatments on Saturdays.  T/Th, I can take off 3.5 K with minimal to no beeping.  Saturdays, they can barely get 2.5 K off because they have to keep giving me saline.  This past Saturday, they had to give me Cat Flow in the middle of my treatment plus change my filter.  So instead of being there 3.75 hours, I was there over FIVE FREAKING HOURS. 

Now the only difference between T/Th and Saturday?  The tech.  I'm convinced the tech I have on Saturdays doesn't know what the hell she is doing.  So now I received an order to get my catheter changed out, which I don't really think is necessary.  Plus they are shunting me to the access center that is owned by the dialysis center instead of the hospital where I normally receive all of my medical care. 

I find this whole thing extremely fishy.  I hate this center with all of my being - they are really pissed that I am going for a transplant, I get nothing but negative vibes every time I talk to anyone from the nephs to the techs to the clinic manager.  I think they want me to get a fistula and make their lives easier but I refuse. 

Folks with catheters - is it normal to have to have the catheter replaced after two months?  I'm freaking out over the procedure - for those who follow publishing news, the head of the Sun-Times organization here in Chicago just died due to an embolism from having a catheter removed - and it was done at University of Chicago, not this fly-by-night access center they have me going to.

Ugh.  A donor can NOT come too soon so I can tell this center where to stuff it.   

[Sugarlump]

I've never known anyone have to get their catheter changed after such short time of use. Mine lasted nearly 3 years each time.
Though I will add whenever one particular dialysis nurse  put me on I always had problems on machine, because she never flushed the lines
out properly at the start so I would get poor flow, clots and lose the line regularly.

[cattlekid]

OOh....I forgot to add that I got to chatting with the tech and she told me that she works 20-hour days in order to get in her 40 hours in two days and go to school during the remainder of the week.  So on Saturday when I saw her, I was her last patient in her 20 hour shift and she was 15 hours into the shift when she started.  Something also doesn't seem right about that - truckers and pilots have time limits on how long they can work, shouldn't patient care staff???

[lola]

Otto had his replaced alllllllllllllll the time, his high antibodies kept putting holes in the tip.....

[ESRD Survivor]

In my experience, I think its the tech.  I was like you, I had the same tech for two of the three sessions, but when I had a different tech I always alarmed, or cramped or the light on my machine ran yellow instead of green.  I had my 1st cath placed in May of 2010 and one of the nurses said after a few months it needed to be replaced because I wasn't getting good cleaning, but my tech put in activasce and it started working but did give me problems here and there.

When I had my 2nd try for a fistula they decided to replace it, which was just done, so I went almost 9 months with my first cath.  See if they can try activace and see it that helps.

[cattlekid]

They've been using the activace (they call it Cathflow) and it helps some but not a lot. 

Did you ask to not have the different tech that was causing you problems?  I'm almost to that point, but not sure if I am being a special snowflake to do so or if it is within my rights.

In my experience, I think its the tech.  I was like you, I had the same tech for two of the three sessions, but when I had a different tech I always alarmed, or cramped or the light on my machine ran yellow instead of green.  I had my 1st cath placed in May of 2010 and one of the nurses said after a few months it needed to be replaced because I wasn't getting good cleaning, but my tech put in activasce and it started working but did give me problems here and there.

When I had my 2nd try for a fistula they decided to replace it, which was just done, so I went almost 9 months with my first cath.  See if they can try activace and see it that helps.

[ESRD Survivor]

I never requested a new tech, because I like all our techs.  I just think she does things different.  She was new last year when I started in June and she was so slow in hooking and unhooking, it was awful, but once and awhile I have her if my tech is out and she has gotten much better.

[Sugarlump]

I asked for another eventually and avoided having her put me on again.
For some reason     I seemed to make her nervous! 

[cookie2008]

My permacaths didnt last long, they would use tpa to clean out my cath but eventually that wouldnt work. Av fistula is the way to go for best clearance, do u have a living donor if not I would really think about it.  And why cant u go to the place u perfer to do ur surgeries.

[cattlekid]

I have four people currently starting the process for living donor.  If none of these pan out, I will go the fistula route but I am putting it off as long as possible. I see people crying and screaming at my center getting their needles put in with their fistulas and I am not interested in this at all as long as I can possibly get away with a catheter. 

My permacaths didnt last long, they would use tpa to clean out my cath but eventually that wouldnt work. Av fistula is the way to go for best clearance, do u have a living donor if not I would really think about it.  And why cant u go to the place u perfer to do ur surgeries.

[pdpatty]

I do believe it could be the tech. Last Friday I had a new tech that had never stuck me before. She had trouble with the bottom needle. She pulled it almost out shoved it in flipped it,finally I got he to prop it up with gause and it worked fine.
But when I got home my shoulder to up on my neck started aching,it hurt all night and I was so sick I finally vomited. THis does not happen with anyone else that sticks me.
Asked one of my reg techs and she said she has heard it from many different patiets that certain techs makes them sick.
Just know it did happen to me.

[Meinuk]

Plus they are shunting me to the access center that is owned by the dialysis center instead of the hospital where I normally receive all of my medical care. 

 I think they want me to get a fistula and make their lives easier but I refuse. 

Ok, deep breath.  You ALWAYS have a right to be upset. 

Now, I think that I can explain a couple of things. 

You have the right to get your care where ever you want to get your care.  if you don't want to use their access center, DON'T.  Tell them to refer you to your center of choice, and go from there. If they refuse, call your local ESRD Network and speak to the Patient Services Represenative and explain the situation. They can advocate for you. This is ESRD Network 9/10 (covers Chicago) http://www.therenalnetwork.org/

As far as you feeling pressured by your center to have a fistula placed.  Your center is being pressured by the ESRD Network/CMS to have every eligible patient who currenty has a catheter to have a fistula.  This is part of the Fistula First Breakthrough Initiatrve from CMS (Medicare) http://fistulafirst.org/ 

Why Fistula First?  Why are you being pressured?  In a simple sentence: Because the United States has a high mortality rate for people on dialysis, and those with a fistula live longer.

Are patients in your unit allowed to learn to self cannulate?  That can help with a lot of access issues.

My suggestion is: RANT here at IHD, let out all of your aggression on the keyboard, and then speak with your health care team in a calm meeting and tell them your thoughts/needs/concerns.  If you don't get any headway in having a meeting with them, put your thoughts and concerns in writing and give it to the Facility Administrator.  Try to EDUCATE them and try to work with them.  You can do this if you keep your anger here, and try to be constructive with them in the outside world. Epoman did a great thing when he encouraged ranting and gave us the  emoticon.  It is experiences like the ones that you are having now that screaming "I HATE DIALYSIS" helps.  And this is just the place to scream it and get it off your chest.

I have gone head to head with two dialysis units when I was in center and when I was at home on HHD. Biting my tongue was almost impossible, but the fact is, we need dialysis centers and we need to train the staff to respond to our needs.  We also need to understand what pressures they are under.  A good mediation is one where neither side is happy.  Everyone has to give a little.

You may also want to suggest that your unit study this:  http://www.therenalnetwork.org/5Diamond/5DiamondDPC.php

I hope that your catheter issues are cleared up, and that your donors work out ASAP.  I'm sorry that this has been such a PIA. But if you work to make your center better for you, then others will benefit too.

[lawphi]

Cattlekid:   If you have to get a fistula, stick yourself and develop button holes.  You might have to look into a different center to establish button holes.  Trust me, you can do it. 

I hate catheters.   I lost count on how many my husband had.  He has a photo on facebook of his last catheter, complete with puss.  You can't get a transplant with an infection. 

[cattlekid]

So I just got back from my catheter replacement.  Owie, owie.  The doc did say that my catheter was covered in a layer of slime so he broke that up with an angio balloon. 

Thanks to Meinuk for the clear explanation of the whole fistula situation.  I did a lot of reading on the fistula first website while I was on the machine last night and it cleared up a lot of things.  I truly think the staff at my center is so used to dealing with elderly patients and those with limited English so they are not used to someone like me who asks questions and always wants to know the why of how things are done.  If they would have given me the fistula first website at the beginning, I probably would have had one already.