Two weeks in WARNING: Rant/Long Post

[AnnieB]

 

   Okay, so I've been on dialysis about 2 weeks and I can officially verify that it sucks.

First, it seems everyone at the center has trouble sticking me. Finally they have decided that only one person should be the official "sticker", so I have a better chance of them learning my fistula. Apparently the problem is that my fistula curves and it's hard for them to get anything that isn't in a straight line  .

I had a lot of bruising and pain after the first week. My own doctor was out of town and it was the weekend, so I called his cover. First, he just advised Tylenol and EMLA cream. Still hurt enough to keep waking me up all night. I called him again the next day, and he started making these protests that what did I expect, that dialysis was going to be painful and I should just deal with it (!!) This was after I told him my pain was past a 10 on a 1 to 10 scale during dialysis. What the hell are they teaching them in medical school these days??

I really lost my temper then and told him there was no way I was going to do D the next day without something to kill the pain. Realizing you can't prescribe strong meds (read narcotic) over the phone, I even drove to the hospital where he was working the weekend so he could check out my arm in person. (In person, he was actually an okay guy). He thought at the time that I might need a fistulagram(?) since they were having problems sticking me...which message he must have passed on to the center since the next night after D the nurse called me to set up an apt with a Vascular Access guy on Monday.

So after Sunday night D, they sent me to see a vascular access doc to find out why they were having so many problems. He did an ultrasound (not a fistulagram, since I told him I am avoiding dye since I want to keep my residual function), and said I have a good fistula, and the only "problem" is that it's curving (which is actually natural, according to him). The nurse said she had never seen a bruise as bad as mine, btw. Anyway, the doctor wanted me to rest my arm and told me not to have my Tuesday treatment. Then to come in Thursday am before dialysis and he would mark my arm so they would know where to stick. He was supposedly going to tell both my neph and the center not to expect me Tuesday, but THAT communication failed...as

Neither my neph nor the center knew what was going on. His nurse called me that afternoon, and the center called me that night at 9 saying, "Where were you?!"..Great. Anyway, Thursday the doctor marked my arm and I did D Thursday night. So the Charge Nurse comes over and tells me I need to have the Hep B series shots. I say, I already had those (?). She insisted that I needed them because "No one at the center had Hep B antibodies" (?? So give THEM the shots, lady. I'm on the transplant list, and they already checked my antibody levels, showing that I should be immune). Long story short, Last Sunday I wind up getting a Hep B shot AGAIN.....

So I went home and looked at my online medical records. Sure enough, the transplant hospital has a record saying I already tested positive for Hep B antibodies. Oooookay. I went over to the dialysis center later, had another question about meds anyway, and brought a copy of the record. I wound up talking to the Center Administrator, and showed her the record . She looked at it, then said they had already checked my HepB ab when I started there, and maybe I might have just needed a booster. Then she went on the computer and said that she didn't understand why I had gotten the shot at all, because I was within the correct range.

The last topic of conversation was how painful I find the sessions when they go past three hours, and mostly because when they stick me in my AC I can't move my arm for the whole time. I want them to stick further up so I can move my arm around. She said, well, most people don't bend their arm, they might just move it a little. ***I doubt that's gonna help me if I'm trying to do nocturnal for 6 hours*****. I mean, if I start to really hurt at 3 hours, no way am I going to be able to do 6 f..ing hours. Her response? "If the doctor says you have to do 6 hours, you'll just have to do 6 hours." WRONG. What he actually said was to move me to that gradually.

And I have no choice of how long to be on if I'm really hurting??? F that. Pissed me off.

Anyway, I don't really trust these people. I don't feel ready to go more than 3.5 hours yet, and she's implying I have no say in this. When I got home, I called my doctor's office, and his nurse got an earful. She promised me that she would talk to him and pass along what I told her. I made it clear that I wanted him to tell them not to extend my hours until I feel ready. In fact, that I am prepared to change facilities if necessary.

I have Dialysis tonight, so we'll see how it goes. Okay, so the bruising has gone down, a *Good* thing, but now I have lumps in my upper arm and my AC is also a bit swollen and lumpy. Needless to say, I am feeling particularly untrusting of the medical profession and this facility especially. I feel I should have a say in my treatment, and in how and who "sticks" me and how long I am really ready to be on the machine When I'm more acclimated (if ever) then maybe I can extend my hours   

Or is this my new "normal"? Is this what others have also experienced? I would really like to know. I know D sucks, but don't think I fully appreciated how much until the last two weeks.

[cassandra]

Hi Annie I hope tonight goes an awful lot better. Sorry you had to go through those 2 weeks. I hope tonight goes better.
Have you thought about learning to stick yourself?


   


Love Cas

[Charlie B53]

I can't blame you a bit when others fail to communicate to each other, especially when it involves your treatment.

As Cass mentioned, learning to stick yourself could be a means to solve some of your immediate problem with staff at the clinic.  And could pave the way for future self-treatment at home using the nXstage so you could adjust treatment duration and flow rates to better suit your needs.

I cannot forgive staff misconduct in your treatment, they sound like they are cold and uncaring for the people that have no choice but to submit to whoever  choose to treat them.  That is just wrong, but what choices do you have other than endure until you can train and do your own at home.

I agree, this sucks.






sp mod Cas

[Simon Dog]

Ok, you think that is bad.  One of the local Fresenius clinics locked up and sent all the staff home, forgetting they had an elderly patient in a chair.

http://www.fox25boston.com/news/family-says-staff-left-grandmother-behind-in-dialysis-clinic-locked-up/423197504

The ambulance doing the dialysis shuffle saw the door was locked and just left with no follow up.   It was only when the wardens at the nursing home did a head count checking for escapees that the misplacement was discovered.

I suspect a nice settlement, and a vacancy for a dialysis RN.

[SutureSelf]

   Okay, so I've been on dialysis about 2 weeks and I can officially verify that it sucks.


Or is this my new "normal"? Is this what others have also experienced? I would really like to know. I know D sucks, but don't think I fully appreciated how much until the last two weeks.

No, hemodialysis should not be this painful all the time.  I'm sorry this has been your experience.  In addition to what Cas suggested, you have 2 other options: contact the facility social worker to have her file a grievance about staff experience on your behalf to the district/regional director of your facility and hopefully you will get positive resolution or switch centers along with nephrologist.  There happens to be an out-patient Nxstage clinic in the St. Louis area.  Maybe a good place to start looking? 

Here's the info:  http://www.nxstagekidneycare.com/locations/st-louis

NxStage Kidney Care
1076 Old Des Peres Road, Des Peres, MO 63131
Phone: 314-925-2522 Fax: 314-685-1176

Maybe an IHD member goes there.  Place a post on the Nxstage discussion board and see.

You can also file a formal grievance with ESRD Network 12 - The Heartland Kidney Network. Authorized by CMS, one function of ESRD Networks is to help patients resolve complaints and grievances with dialysis facilities.  You should have been given info about the Heartland Kidney Network in your facility welcome packet.  If not here is the contact info:

Heartland Kidney Network
920 Main St. Suite 801
Kansas City, MO 64105

Main phone: (816) 880-9990
Patient toll free: (800) 444-9965
Fax: (816) 880-9088

http://heartlandkidney.org/about_us

[Michael Murphy]

When I started dialysis three and a half years ago I was constantly infiltrated if I moved my fistula arm at all.  This continued for the first 6 months.  It gradually stopped but I even considered having a line along the fistula tattooed to stop the occasional infiltration during cannulation.  This problem also faded away and I learned never to move that arm.  About three months ago I mentioned to the charge nurse that I was still afraid of being infiltrated. She laughed and pointed out the size of my fistula and joked she could throw the needles like darts and not infiltrate my fistula, it turns out over time the pressure from the dialysis machine enlarges the fistula. Making infiltration less likely. Since then I will move my arm carefully and have had no problems,  my fistula looks like a medium garter sake under my skin.  Just so you know it gets better. 
It is the second time this year a patient has been left behind at a clinic. The first was in a Davita clinic in Indiana and the patient died, this one in Mass at a Fresinius clinic.  I go to a Fresinius clinic and whe a non ambulatory patient is delivered a form is given to the charge nurse.  The transporter always wants it signed but the rules are the charge nurse signs it when the patient is picked up.  The nurse just has to look at the forms and he or she should know the patient was not picked up.  Someone was not following the rules,

[Blake nighsonger]

Roger that.  lower arm fistula ,did not mature then upper one for near a year thinking I'm on top of game them first time RN canulated my dialysis access got infiltration from hell, next day i get to have a neck cath. installed, boy talk about an eye opener.(note; Lithium toxicity.) Apparently  needed boring out()  fistulagram.' Yes it's found to be a deep s.o.b.,,  along with both needle entrances having a bend slightly in opposite direction at completion of horizontal extension. i find  learning puncturing myself a bit ch . it's like the more i do for myself seems like they got more time to help others besides me! .hey hey pulled my own needles today and patched myself. have to be kinda athletic of a sort ,lower one was a sharp and sliced skin below site. it i get infection seemslike that too  thanks.





sp mod Cas

[cassandra]

Hi AnnieB how are you doing now?

Blake N you are right, you can get infiltrated always. And I had that feeling too that the techs really are like: o you don't want us to needle you? Think you can do it better? Let's see if you can get your own tea too.

I hope the pulling gets easier, or that the techs will help you with that, if that's what you want.
I was pleased to see I could keep them away from me, and have them help people who needed them, and say goodbye when I could start Nxstage at home.


Love to all, Cas

[Blake nighsonger]

       Hello there  cassandra.  i'll  say goodbye.  You are very kind......                                                                               .

[AnnieB]

Hi AnnieB how are you doing now?

Blake N you are right, you can get infiltrated always. And I had that feeling too that the techs really are like: o you don't want us to needle you? Think you can do it better? Let's see if you can get your own tea too.

I hope the pulling gets easier, or that the techs will help you with that, if that's what you want.
I was pleased to see I could keep them away from me, and have them help people who needed them, and say goodbye when I could start Nxstage at home.


Love to all, Cas

I had D last night and it went better. The nurse was able to get me on the first stick, and since she didn't place the needle in my AC I could (carefully) move my arm so it wasn't so sore. There was something that really pissed me off, though. After all that fuss I was making about not wanting to be on for more than 3.5 hours right now due to my arm getting really sore, and even telling my neph's nurse the day before to make sure he told the center that I didn't want to be moved to longer hours until I had acclimated; guess what? After I had been on for what I *thought* was going to be my full time, when I asked the nurse if I was coming off, she checked and said "No, you still have 24 minutes left". What??!!!! Apparently my nephrologist had come into the center and talked with the administrator and between them had decided that I should just continue on the original plan (4 hours). He wrote the order for 4 hours yesterday, never bothered to let me know, neither one of them seemed to think it was necessary to consult with me about it. Here's what really torks me (besides what I see as going behind my back to make decisions about my care without letting me know) is that if a patient is telling you the reason they don't want to do more time right now is because of pain, I would *think* the automatic response would be to respect what she is saying. At least, when I was in nursing school, if a patient tells you she's in pain, you don't just say "Suck it up, baby." And that is the impression I've been getting from these people. So last night even though I was furious, I decided to go the full 4 hours since I wasn't hurting, but now I feel I can't trust my doctor. I made my feelings loud and clear at dialysis, too. They seemed surprised that I hadn't been told of the increase in time. The last half hour I was there, I admit I was glaring at everyone and saying unkind things about my nephrologist. A day later, and I still haven't heard from him.

I've had this doctor for about 16 years, and up til now I would have said he's been pretty good and good to work with. But this makes me really consider whether it's time for a change. 

[Blake nighsonger]

i learnt to too how frustrating it is not knowing what the .....for example* first time* i had needles in my ac---- i did not know that i got infiltrated i just thought that the pulsating hammer pounding in my was suppose to *?feel like?*  just didn't understand or had not been schooled on what sensation* was or wasn't*. Besides was in lock brain , at the time day prior could not or did not understand simple how to ........ it sounds ridiculous now but there was a link or a defence mechanism of sort (*end stage renal failure *as ins. company liked to refer it as). that made just* simple```into''''-- hard*  stuff, hhhello?? for me. ...........to get started ,the physical stuff was tough enough now ...... anyway   thought i had to have  rocket science degree dag near literally to start the process.   . alto of people know what its like here .... boy  i felt s. loads better after first 4   hour treatments. ******* . if it's me reading the signs '. )

[LorinnPKD]

Repeat after me:

YOU ARE IN CHARGE OF YOUR HEALTH.
YOU ARE IN CHARGE OF YOUR HEALTH.
YOU ARE IN CHARGE OF YOUR HEALTH.

Good medical providers are out there and if pushing doesn't work, you should start searching.  You deserve better, Annie.

[Charlie B53]

It can be difficult to know the difference.  If your only experience is with a marginal Dr how could you KNOW there are better?

It isn't like they have "Open House' days to meet potential new patients, serve milk and cookies.  (Sarcasm).

I tell people that if your Dr isn't willing to take the time to TALK with you, and LISTEN to you questions and make sure you understand everything, then you have the wrong Dr.

What I really hate, is finally finding a very good Dr, he retires.  And I am searching for another, again.

[AnnieB]

My sister is in town and has been helping me with various things, including the ongoing acclimation to dialysis. She's also been a godsend in interfacing with the medical staff for me. It helps to have an advocate who can talk with people for you when it seems all other alternates lead to dead ends. She talked with my doctor's nurse, who suggested she speak with the center administrator since my care has been shifted now to the dialysis center. So last night my sister came in with me when I went to D and I asked for the administrator. When we got to her office, I introduced my sister and excused myself since I figured things would be smoother without me there. Later last night, my sister told me that the administrator said that her hands were tied as far as the time I was on the machine, since my doctor had written the orders. She didn't have the option to change that. I could still get off early if it was a problem but I would need to sign something saying it was against my doctor's recommendation. And I'm on the transplant list, so that probably would look like noncompliance. It seems to me that what I need to do is ask my doctor to write a different order for me that allows for me to come off the machine early if necessary.

So I am coming to perhaps the *real* problem. Communication, or the lack thereof. Though in other ways, he's been really good in terms of working with me when I want something, he's not too great sometimes in getting back to me. And the communication regarding time on the machine from 3.5 to 4 hours was a total FAIL. He could have done a lot better in calling me to let me know what was going on, or in explaining to me why he felt I should stick with 4 hours. I got blindsided and was totally unprepared for going with the longer time.

My sister is going to call him/his nurse again for me and ask him to change the order so this is not a problem. If problems or other problems such as lack of communication continue, I will feel almost forced to look for someone else. And I would really regret having to do that. I have a lot of history with this guy and he's helped in other situations.

One other thing I thought was interesting was when I went to get on the machine, I saw a slip of paper with a list of other D clinics on the arm. The nurse said, "Since you said you were thinking about switching clinics, here's some info". Do you think they are interested in getting rid of me?

Actually, when I looked at the paper a bit later, I saw that those were clinics that had home hemo, which I had discussed with the SA. But it's funny that my first impression was they wanted to kick me out for being a pain in the ass.

Last night's session - 4 hours - actually went fairly well. My butt gets fairly sore, though - but I fixed that (somewhat), by putting the chair back down so I can sort-of lie down. The only exciting part was when I started feeling nauseated, and they laid me flat and gave me saline. I was drifting off and the nurse kept poking me to make sure I didn't pass out. Apparently my blood pressure had taken a dive.

[Cowdog]

Hi AnnieB,
Little bit of advice from someone who's been in-center for 8 years. If you have a real problem address it, all but the most incompetent will listen and help you. But address it, get it straightened out and let it go. Many things aren't a big deal in the larger scope of this dialysis life.

Your Dr wrote the order, staffs hands are tied until its changed. He wrote the order based on minimum cleaning criteria. Address it with him.
If you want off early ask to sign an AMA and they will take you off. Before you do that please consider you are probably on 17g needles and a slower pump speed which makes staying your time even more important to get enough cleaning to start feeling better.

Nephrologist means they are in the business of dialysis. You will see him about once a month for 1-2 minutes when he does rounds. ( I met my Dr in the ER and have never been to his office, only see him in center). His nurse practitioner will come around most weeks. Get a little notebook to keep in your bag, write down pertinent conversations and dates. Sometimes you need to reference those when someone forgets, if they know you document no one will argue.
I keep a log of every treatment and any discussions I have with nurse or Dr about my treatment. BTW, I have been the one to change my run time but both changes have been increases.

Advice you've already been given about learning to self cannunlate is good advice. I was a problem stick, only two or three were consistently successful with my arm. I was ALWAYS in a panic about who was there to stick me. Learned to stick myself and that alone took 90% of the stress off of going to dialysis. Side note, I use buttonholes most of the time but when necessary I use a sharp, when I stick myself it doesn't hurt. A sharp stick by someone else feels like a wasp sting.

You are new to this and it is scary as HECK starting out but it gets better quickly. Your body will acclimate, your fistula will grow, skin above it gets tougher so less painful.
When you start it hurts, feels like two big needles in your arm because there are two big needles in your arm. I still have days where one of the needles feels like a big needle in my arm.

I live by the mantra that there are two groups of people I try really hard to not have altercations with, the dialysis staff or the person handling my food at the drive though window.

Good luck to you, there are some good people on here who will answer your questions, commiserate your problems and cheer you on!!

[Cowdog]

Most dialysis chairs the seat cushion gets worn and collapses, they try to keep a customer in them any time the lights are on.
Get a good memory foam chair cushion, that will help a great deal with the sore booty.

[Michael Murphy]

Three word of advise about butt pain. Gel Foam Pillow.   Get a good one they help tremendously.  Finally your body is learning to deal with dialysis, during the first 6 months D sucks big time.  As time goes by it still sucks but a lot less.  Hang on it will get better.

[Fabkiwi06]

I hope you're hanging in there. It does all take some time to adjust to the dialysis, the nurses, the doctors, terminology, all of it. It's a lot, and it does take time.

Documenting everything helps so much. Making notes of what was done and how it makes you feel differently can help guide the direction you need to go in to get to feeling better. One of the first things I tried to do was establish a relationship with a nurse that I could go to or call up when I had questions or concerns. I've had some great ones and I've had some not great ones (one I could certainly tell was annoyed that I asked so many questions). Most of them understand that this is YOUR LIFE at stake and are pretty helpful.

When I first started dialysis back last October, it was unexpected and I had to be on hemo until I stabilized enough to get my PD cath placed. After I left my initial hospitalization to start treatment at the clinic, it was rough. Two days out and I was back in the ICU with pulmonary edema. Once I went home from that and went back to treatment, we struggled with my dry weight so I was constantly either extremely dry or uncomfortably puffy. My blood pressure and pulse was bouncing around. We kept switching medications. I slept constantly. It was a struggle to make myself meals. My hair started thinning. My hemoglobin was bouncing up and down. I was miserable and depressed. It took about a month for it to all to settle in to a routine - in time to switch to PD. It took about another month before I really felt like I had a handle on all of it. Now, I feel pretty good (all things considered) and I view my machine as more of a necessary evil that keeps me alive.

It does suck. It sucks so bad. But it does get better - still not gonna miss a second of it when I finally get my transplant, though!

[Simon Dog]

Most dialysis chairs the seat cushion gets worn and collapses, they try to keep a customer in them any time the lights are on.
Get a good memory foam chair cushion, that will help a great deal with the sore booty.

Wheel chair cushions are helpful.    When I was in-center I used one made by "Drive" I got from walmart.com.

[jmintuck]

It does suck to have dialysis, but sucks less than the main alternative. I thought when I got my fistula needled the first time, it would hurt so damn bad. I had EMLA cream at the time. It barely hurt. I accidentally flexed my arm one of these times and got a hella bruise to end all bruises. It hurt like mad the first day. Not funny. Seems fairly "removed" now, since that day, several days ago. Then, the last time I had the needle pulled, I squirted a bit of blood and bled for 10-15 minutes or so. That made me nervous. Got over it and the damn thing bled a little onto my, thankfully, dark blue overshirt with long sleeves. Was fortunate it never started squirting like mad when I discovered it. I was PETRIFIED of that. I KNOW for a fact that bleeding can be life threatening, and I dont wanna F$$$ around with that ANY DAY!
v
This is just a newly discovered issue I personally have no interest in screwing with if I had gone ahead and done home dialysis. I know dialysis and blood is NOTHING to screw around with!

Oddly enough, I used NO EMLA cream the last two needled dialysis events in my fistula. I felt less pain than I ever expected. I sure manned up since I forgot to apply it one day and got out to get my bus when I remembered. I said to myself" Grow a pair and see what happens. There is always a next time to know for sure".

Also I have a Central Catheter atm and NEVER had an infection in this or near it or ANYTHING! Sadly and oddly enough, my older sister died from an infection, mainly blamed on this and also had 2 fistulas attempted, but just because of bad luck, both times, they never "took". My fistula "took" beautifully at first shot. I was scared to death that it would reverse itself somehow when it was healing. I religiously checked for the thrill in it, and the thrill stayed beautifully strong throughout the 6 or so months of it healing in. I thought "Wow! The thrill stayed strong, seemingly from day 1". The nurses listened to it and were so happy for it. I couldn't be that much happier. I felt so horrible for my late older sister. I was, at the beginning, fearing the same fate as her. I was like "OMG! I DON'T wanna go that way"!

When my fistula "took" beautifully at first try, I could not believe I hit the dialysis jackpot, of all things dialysis wise. The central line will sometime come out by next month or s.

[Simon Dog]

Remember, millions donate blood (14GA needle) with no use of EMLA every year.

[Charlie B53]

That may be a large reason why I never gave blood.  Needle phobic.  I used to pass out with a tetanus shot.

[jmintuck]

I had needles a-plenty growing up. I mostly knew to simply man up. I knew from day one with my fistula, which took beautifully, to man up once again, EMLA or no and see what happened. Today, I manned the hell up and took two big needles, 15g and worked beautifully.

I bled once again all over the place when they pulled them, but seemingly in 10 minutes about, it finally stopped.Little sore, but what can you do with a new as hell fistula. You just get used to it. That is all I know, so I just damn well man up and grow that pair.

[Charlie B53]

Over the years I have done some really stupid things thinking how it proved I have a 'pair'.

A broken vertebrae tends to remind us that we are not immortal after all.  Reoccurent strains ever since constantly remind me of that.

Face with the thought of a pair of 15 ga, my pair shrinks, tight.

I don't know how all of you do it.  You ALL have my respect.   I'll stay with PD as long as possible, Thank you very much.

[Michael Murphy]

The way I deal with the needles is I don't look.  When I started I watched the cannulation and I swear the they looked as big as the Holland tunnel going in to New York.  When I see them coming out they look much smaller.  So I don't watch them go in.