First Day of Training - oVeRwHeLmInG!

[TorreF]

Well, I completed the first day of my training on the NxStage One with Pureflow.  Let's just say I am more than a little bit overwhelmed.  The first issue was with my access.  I have a 6 month old fistula that was used for the first time last week at the center with only one needle at a slow rate (draw).  Today they got two in but immediately had to stop using the arterial because the pressure was near 300 with a 200 flow rate.  Back to the PermCath.  When they took the needle out after the treatment, I guess I didn't hold it long enough because when I checked, it squirted blood straight up into the air.  That must have been the straw that broke the camels back. I was trying so hard to be brave and put on a good face all day, but i lost it at that point.  THe whole day was overwhelming.  I tried to watch, follow and understand what my trainer was doing, and for the most part I was okay, but there are many things that are different than the machines at the center.  FF was confusing, as were so many other things.  I am looking forward to a new start again tomorrow, but I have to be honest and say that today was difficult.  I don't expect it to be easy, and I am dedicated and committed, but iwas tougher than I had thought.  I certainly don't want to scare off any newer people or those who are thinking about starting.  I would love to hear from people who are over the initial hurdles, but can identify with where I am now.  The trainer is saying that I probably will not be able to do less than 4 hours a day, 6 times a week.  Part of me can't see how that is any better than going to the center three times a week.  I teach First Grade and have a beautiful active 11 year old daighter and 14 year old stepson.  I am having a hard time seeing how this will fit in my day.  I know the health benefits are signfiicant since I will be getting alot more dialysis each week.  I also am having a hard time figuring out where to put the machine.  I had originally thought in my bedroom, but if I start with daily hemo that won't work.  In the living room, our house will become like a center and I dont want my daughter to have to see this stuff (and me hooked up) all the time.  OK, so I think I have vented and now I need to breathe, go to sleep, and start fresh tomorrow.  I know it will be a better day.  I really am optimistic and hopful that this will work.  Life is Good!

[Meinuk]

Ok, first thing is take a deep breath.  Everything in reality is so much different that reading and watching videos, BUT I promise you, IT GETS EASIER.

Think about your students on the first day at a new school, they can be scared and overwhelmed too.  Why should we be any different?  And our first day involves blood and sticking ourselves with needles ON PURPOSE!  You are there to learn, not to show off everything you know.  RELAX.  Blood happens.  My apartment used to look like a murder scene on many occasions, months after I got home.  A little blood goes a long way!!!

As for your access, soon enough you will know it better than anyone.  I had problems with my arterial pressure too, and it was a PIA, but by the end of it all, I could play my Fistula like a violin. Sometimes, you may need intervention, (fistulagrams, angioplasty etc) but there is a GREAT center in NYC for that, American Access.  I miss them, they were great to me, and they had the BEST drugs!! (we had a standing date every three months. Dr. Spinowitz is a cutie!) I reviewed them on YELP http://www.yelp.com/biz/american-access-care-of-new-york-new-york

Take your time, don't try to memorize everything.  You are learning by doing.  Over and over, you'll be doing it.  The first week is just to absorb what you are getting into. (and to feel better once you get adequate dialysis).

NxStage is a lifestyle choice.  You are in this for the long run.  Relax, and the transition will be a bit easier. Your team will work with you as long as you need to.  And don't worry about the 4 hours per day.  The first few moths are an adjustment, your body and blood work will be your guide to the time on the machine. Don't worry about FF for now. Your nurse should set the machine for you.  Again, you will know your prescription by heart soon.  (I still know mine, and my last dialysis was 11/01/08)

I promise, a month from now, you'll look back on these posts and say "Wow".  And pretty soon, you'll be writing to newbies telling them to relax, and not stress. Really.  Been there, done that.  Were it not for IHD being there to cheer me along it would have been overwhelming to me too.  But every day, I would rush home and write in my training diary on IHD(sometimes when I am feeling alone, I re read all of the encouragement Susie wrote to me - I miss her).

All the Best,

Anna Bennett

[rocker]

Second everything Meinuk said.

I'm the partner with a degree in engineering and yes, it was all intimidating.  The machine bits were easy for me....but being responsible for my partner's well-being on the machine was very scary!  But again, it will come surprisingly quickly.  For me, it was checklists - follow the checklist, and everything will get done.

I once heard a great exercise for getting a perspective on the blood.  Take a tablespoon of water.  Add a couple drops of red food coloring.  Now drop it on the floor.  You don't have to actually do it to imagine what a bloody mess it would appear to be (if you actually want to do this, I suggest going outside!) - but a tablespoon is a very small amount of blood.  The human brain is wired to respond to red with alarm. 

As for your children "seeing you on the machine" - well, if you think about it, there really isn't much to see.  A machine with a couple of red tubes leading to you, and a couple of other wonky things sticking out.  What they will see is your attitude.  If you are casual about being on the machine - this is something Mom needs to do to stay healthy, it isn't scary, it doesn't hurt, Mom is fine while she's on the machine - then that is what they will see.  You could even set aside some special time with the kids while dialyzing - watch a movie, play a game, work on homework, or something else age-appropriate.  I think 11 is certainly old enough to understand what's going on.

I sometimes get down about the dialysis, but I try to think of it this way.  We all need to do things to stay alive.  If we don't breathe, we'd be gone in a couple minutes.  We all need to breathe, to drink, to eat - this is just one extra thing some people have to do, along with all the things we all have to do.

I guess the regimentation of being in-center is good for some people - but I much prefer the flexibility.  If you've ever had a bad night, maybe a little fluid-heavy, and just suffer through the night knowing you have to just stick it out until chair time - well, I prefer being able to dialyze him if he's uncomfortable and give him immediate relief.

  - rocker

[looneytunes]

Torre, as a caregiver and the primary keeper of the NxStage set up, run and tear down for my husband, I can understand all you are feeling about the machine.  Just a word to assure you....I have now made almost every mistake that can be made (I think) and I haven't harmed him yet.  So...just stay with it.  It will get easier after a few days.   

[M3Riddler]

Torref,

Training can be very stressful for anyone. One thing you may want to do is dont even try to take in everything they are telling you at once. There is no way you will be able to remember and will be info overload. Take it in steps... Also, let the trainers know if they are either going to fast or speaking in terms you dont understand. Remember, training is just for that. Do not rush yourself.
Another helpful tool is talk to others who have experienced the same issues as you. Along with this forum there is the NxStageUsers Forum. Both are great sources to ask those who are both training and to veteran users. Many were in the same seat you are in now. Also, those on dialysis may be able to help explain things better than a trainor. Not to say that the trainer is not good, but I believe the users are better as a trainor is only training and not experiencing the actual treatment along with learning.

Regarding FF ( Flow Fraction ) Think of it in terms as how much you turn your water spicket on the faucet on your sink.  The higher the FF, the more dialysate that flows per hour just as water would come out of the faucet. I would not concern too much right now about this on the 2nd day of training.

Regarding your fistula and higher pressures. Many reasons can cause this including, needle being against the wall of the vein. High hemoglobin and just a bad stick.

Just try to take in a few points each day. And by all means, if there are speaking in terms you dont understand, do not hesitate to ask no matter how stupid you may believe the question is.

I have been on pretty much every type of dialysis form PD to in-center and believe me, in my opinion, nothing beats NxStage at home while you are in control. No driving to centers, feel better, do treatments any time you wish, can travel without a 2-4 months advance notice to the center near your travel spot.
Just dont give up just because of a few bad days.
Let us know how it goes...

///M3Riddler

[cariad]

As for your children "seeing you on the machine" - well, if you think about it, there really isn't much to see.  A machine with a couple of red tubes leading to you, and a couple of other wonky things sticking out.  What they will see is your attitude.  If you are casual about being on the machine - this is something Mom needs to do to stay healthy, it isn't scary, it doesn't hurt, Mom is fine while she's on the machine - then that is what they will see.  You could even set aside some special time with the kids while dialyzing - watch a movie, play a game, work on homework, or something else age-appropriate.  I think 11 is certainly old enough to understand what's going on.

Oh, most definitely. Torre, I had 5 days of in-patient dialysis before my transplant in March, using a tunneled line. I specifically requested that my children (3 and 7) be able to see me hooked up on the machine. They were allowed in to the room and I attempted to speak to my children through the entire hook up process. (Unfortunately, the staff decided to try to make my kids comfortable by setting up chairs for them in front of a television. My kids are not great at holding a conversation they consider boring while a television is playing.) So, I kept calling to my older son across the room, saying things like "See, they are sterilising the area. See, they are hooking up the tubes, but it doesn't hurt. See, my blood is going down this tube, into the machine, machine is cleaning it, then it returns through this tube." I really wanted them to understand why I had to be in hospital and learn why they need to take kidney health seriously. My older child is easily flipped out, but he did not even blink at the sight of me on the machine. I think Rocker hit the mark with her suggestion that it is about how you present it to the kids. I was very matter-of-fact about it all.

I can offer no advice about NxStage, but I do wish you luck in the training. We are all behind you!

[cookie2008]

Take it one day at a time, it gets easier as you go.  It is a learning experience and if you do make a mistake take it and learn from it. I have three small grandchildren 7, 5, and 3, that are there at my time of hook up, we give them a mask and they watch as Im getting on the machine they look in amazement.

[donster]

We just finished our first week of NxStage training and the first few days were indeed a bit hard to swallow. My wife Sheila had been doing in-center hemo for almost two years so we're really looking forward to the autonomy this will hopefully give her/us back soon. Our nurse teacher George has been awesome  ; my confidence for success as a dialysis partner is good (no worries). Hoping things have gotten easier for you since the original post.

[okarol]

Congrats donster - Sheila is lucky to have you!
Please go to the Introduce Yourself section and tell us more about you.

okarol/admin