Treatment partner

[Triker]

It's been quite a while since I've been on. I guess because everything has been going very well for me. I'm wanting to go to home hemo. My problem is the training for a partner. I have a willing partner, but they insist that my partner will require three weeks training, and she can't afford to take off work for three weeks. The lady that does the training was willing to spend a couple days with my girlfriend and do a compressed session, but the head nurse wouldn't go along with it, and insisted that it would have to be a full three weeks. I can only guess that it's some sort of liability issue. I may be able to get someone to train with me, but it's sorta silly, since that person wouldn't be there when I do my treatments. That may be what I'll have to do. I've done peritoneal dialysis for 4 years previously, but went to hemo, because I had problems with the placement of my peritoneal access. The catheter irritated my irritable bowel syndrome. I stick my own needles, and feel comfortable caring for myself. I don't think I will have any luck influencing the head nurse's decision, but hope that my doctor might. I came on here to get information that might give me ammunition to help convince my doctor. My doctor is all for my doing the home hemo, but whether he has enough influence to change the nurse's mind remains to be seen.

I really want to do this!

[Hanify]

Over here in NZ they ONLY let people do home haemo if they can do it by themselves.  Because home haemo is so much better and gentler there is less chance of anything going wrong (although, there still is a chance of something going wrong of course - so they have to really trust the person doing it - if that makes sense).  I can ask my nurses for some info on the stats etc if you want.

[Triker]

Thanks. I would appreciate it.

[Malibu]

Check with Quality Dialysis for training...  They worked with some friends who had time issues with work.

At our clinic, Davita, they insisted on 4 full weeks of training and there was nothing that would change their mind.  Even when for the last week of our training we arrived, did our treatment totally solo all day, disconnected solo and said goodbye on the way out....we still had to stay.

[tyefly]

  I do have a partner but she does not have to be there every day.... In fact she has only been there once in 6 days....   They are good with just training me  and I am ok with that too.....   they told me that all my partner need to know is how to do a emergency rinse back and how to call 911.....   but the more they know they better....  they way if I forget something   they can fetch it......

[jbeany]

It's not a NxStage requirement - it's your center being pissy.  When I trained, my partner showed up for only a few sessions.  As long as I could do the tech stuff, and he could deal with the emergencies, it didn't matter if he was there for every session.

See if you can get contact info for the NxStage rep who works with your center. They may be a better advocate for you - they want as many people on as possible!

[Triker]

It's not a NxStage requirement - it's your center being pissy.  When I trained, my partner showed up for only a few sessions.  As long as I could do the tech stuff, and he could deal with the emergencies, it didn't matter is he ws there for every session.

See if you can get contact info for the NxStage rep who works with your center. They may be a better advocate for you - they want as many people on as possible!

Thanks! That's a good idea. I dropped a letter off at my doctor's office. We''ll see it has any effect.

[Malibu]

There is a story in the News Articles area of IHD titled "Dialysis patient takes control of her own care"  that you should read.  IT is about someone doing dialysis on her own.  I gather she posts here but me still being a newbie I don't know who she is.

Our clinic (DaVita) also insisted on a partner.  Wouldn't let you do it without one.

[petey]

Our clinic (DaVita) requires a partner and required the partner to be at every training session, too.  Luckily, we trained in the summer when I'm out of school.

[Triker]

  Good news! I'm going to start training next week. I have to have a partner, but she only needs to know what to do in an emergency.

[jbeany]

 

I was always more comfortable knowing help was close at hand for emergencies, but it seems silly to me to expect the partner to know all the details about things like changing the pureflow packs and filters.  I was the only one doing that anyhow.

I used a small walkie talkie set.  Whoever was helping could be half a block away, and I could still get in touch with them so they could rush back in an emergency.

[Meinuk]

Hah - "Dailysis Patient Takes Control of Her Own Care" - that would be me... I don't post much lately, but I did dialyize alone for a year.  I trained alone, and  caused a bit of a kerfuffle when my unit closed and I was told that I could not dialyize alone.

The easy path would be to play the game, have someone train with you.  I took the more difficult path -I did everything alone (in theory - the truth is, I had a lot of support, here at IHD, and my Rockstar - they just didn't live with me).

If you are up to it (an your medical team agrees) NxStage is TOTALLY doable alone. I thrived.  I felt great, and aside from a few oops moments (scary but NOT life threatening) NxStage kept me healthy.

I wrote a lot about it, but the important thing is to assess yourself, if you feel confidant and your team agrees, GO FOR IT/fight for it.  NxStage at home is so much better than in center. The more dialysis you get, the better you feel - it changed my life.

Here are some of my posts:

I blogged about my training here:  http://ihatedialysis.com/forum/index.php?topic=5229.0

There was a newspaper article me dialyzing alone posted here:  http://ihatedialysis.com/forum/index.php?topic=7332.0

My Unit was suddenly closed by the state of NY I wrote about that on Bill Peckham's blog: Dialysis from the sharp end of the needle:
 
Here:  http://www.billpeckham.com/from_the_sharp_end_of_the/2008/08/dumped-by-your.html
Here:  http://www.billpeckham.com/from_the_sharp_end_of_the/2008/08/where-the-ball.html
and here:  http://www.billpeckham.com/from_the_sharp_end_of_the/2008/09/restoring-my-fa.html

[tyefly]

 thanks so much....this is the type of information that I would like to have when approaching my clinic about nocturnal nxstage.....   Your such a inspiration

[Malibu]

Thats great triker!!!!!!   

[rocker]

Congrats on starting training!

I used a small walkie talkie set.  Whoever was helping could be half a block away, and I could still get in touch with them so they could rush back in an emergency.

Video baby monitor for the win. 

That's what we use.

[Triker]

I guess the requirements for a partner were given by a board at my facility. There were three doctors and three businessmen. It wasn't up to a head/charge nurse. I explained that I felt the decisions should come from the bottom up rather than top down, since each patient is different and their needs were different. My persistence that I didn't need all that much training for my partner finally paid off.

[Bill Peckham]

Hah - "Dailysis Patient Takes Control of Her Own Care" - that would be me... I don't post much lately, but I did dialyize alone for a year.  I trained alone, and  caused a bit of a kerfuffle when my unit closed and I was told that I could not dialyize alone.

Yes a bit of a kerfluffle.

I guess the requirements for a partner were given by a board at my facility. There were three doctors and three businessmen. It wasn't up to a head/charge nurse. I explained that I felt the decisions should come from the bottom up rather than top down, since each patient is different and their needs were different. My persistence that I didn't need all that much training for my partner finally paid off.

Triker that is awesome. You've made it easier for the next person. Once you're settled in at home it might be good to circle back and write the board updating them on how it is going, thanking them, etc. You might also suggest that they would benefit if their board included a dialyzor.

[Meinuk]

Sadly, good dialysis is really a grass roots movement.  I met with a lot of resistance from each clinic I dealt with. My first training nurse was angry that my nephrologist was "forcing" her to train me (after one session, we became close and still share a mutual respect/friendship).

When I was taken in by my second clinic, they made me jump through more hoops than anyone should every have to jump through. I had to swallow my pride on many occasions and just listen to their misinformed lectures.  All that time, the Nephrologist from my new clinic never met with me, and the PA told me that she thought I was nuts. I was only there for a couple of months, but after they stated their concerns, got the lectures out of the way, only THEN did they get to know me and my level of health, by week three, they were converts. (it was an uphill battle, and they were the clinic who had agreed to take me as a solo dialyzor)

The dialysis industry in the United States is mired in bad practice, and difficult to change.  Triker, you are being a great advocate for yourself, and for others 'cause that is the most efficient way to change things, show your health care team that people with CKD can take control of their own therapy, and they can thrive.

There is safety in numbers.  All of us need to share our stories, and hopefully one day, high dose home hemodialysis will be so commonplace that newspaper articles won't need to be written about it.

RE: the Kerfuffle.... I was always taught that if faced with a conflict, assess the situation.  If it won't matter in five years, walk away.  If it will matter in five years, fight with all your resources.  Optimal Dialysis is worth the fight.  During my time without a unit, I was scared, hurt, sad and angry, BUT I was also well dialyized and ready to take on the system. (I couldn't have done that when I was in center - and I could never have taken on they system without... well, you know who....)

Triker, well done!  I am looking forward to reading more about your switch.

Best,

Anna Bennett