@#$%$#$^& Doctor!!!!

[jbeany]

And I repeat - I am not, NOT, starting in-center.  I want training for home dialysis, preferably on a NX Stage.  I have done the research; I have transportation issues with going in-center; I know what I want.  I have told this to the social worker, the home hemo nurse, and both my doctors.

So the hemo nurse calls me today.  She's spoken to my neph again.  He wants me to start in-center immediately.  He's been pushing this for a while.  I keep pushing back.  I just had an iron transfusion, so my hemoglobin levels are more than fine.  I've just had the rest of my labs done.  My creatinine is 6.1.  My BUN is 76.  Both of those numbers are in a normal range for someone who is already on dialysis - in fact the creatinine is actually considerably lower than the standard numbers I've researched.  All the rest of my labs are either normal or still in line with a dialysis patient.  Plus, I feel fine.  I know this, so I'm refusing treatment until I can get the kind I want.  I am not making an uninformed decision about this.  I know what the labs mean.  (I'm also afraid that if I start in-center, their efforts to get me trained on a NX stage will slow to a halt.)

So I asked the home nurse what progress she had made at getting a NX Stage.  She's traveled to the other hospital that offers home training on NX Stage.  She's spent a day training on it, and got all the info.  She just needs the neph's permission (prescription, I guess) to call the rep and get the machine delivered to the local center.  Okay, it's been weeks, what's the hold up?

Apparently, when she talked to the neph today, he hasn't even looked at the info on the NX Stage.   He's insistent that I start, but he can't take 20 minutes to look over the info about the system I want to start on.

I may yet have to travel to the other hospital to get the training.  The nurse said they have no opening in their training program until the first of January.  Well, fine.  So I'll keep an eye on my labs and wait until then if I have too.  If the doc is so certain I need to start before that, he can get his act together and order a NX Stage.

And just for fun, when I said I would rather travel to get the training than start in-center, the nurse tried to convince me that it would be a bad idea because "The training will take 6 weeks and you would have to stay there with your husband the whole time."  Ummmm, no.  Actually, the training takes less than half that.   I've read step by step, day by day accounts of training on the NX Stage.   It does not take 6 weeks.  And I told her that.  (Thanks, epoman!)

I almost felt sorry for the nurse by the end of the phone call.  She was trying so hard to get me to do what the neph wants.  Poor woman must not be used to being mule-kicked by someone as stubborn as I am!

[kitkatz]

Yea for you! 

[Epoman]

Good for you, if you feel ok, then hold out and FIGHT! Get the machine. I know some doctors who are still oblivious to what a "NxStage" even is.  It took me some time but I finally got it. You will be so much better off in the long run if you start dialysis with the System One.

[JerseyGirl]

Just curious - do you have an access maturing?  How's your potassium, calcium, phosphorous, PTH? What is your creatinine clearance?  Blood pressure?  There is so much more than BUN & Creatinine when it comes to labs to measure your well being. 

[jbeany]

My graft has been in place for a year, jersey girl.  And all the rest of my labs are at normal levels yet - I just didn't type them all out.  My blood pressure is better than it's been in ages, thanks to switching to better meds.  I'm watching the numbers more closely than the docs.  I'm stubborn, not stupid!   

[okarol]

We were also told that we would have to go every day for 3 to 4 weeks
to be trained so that Jenna could switch to home hemo. So that's not
accurate, huh? When I spoke to the nurse who does the training she
said some patients take 6 weeks to learn! So I am confused!
I think you're doing the right thing, as long as you are feeling ok and
can think clearly, hold your ground. I know when Jenna's creatinine
jumped from 6.5 to 10 in a matter of a week or so, she couldn't cope
with any training or info, she was really sick.
Is there only one training place available to you? Can't your GP order
the training? Sounds like you neph is doing things the way he always
has, not too motivated to do something different.

[jbeany]

My GP has already told me I know more about dialysis than he does.  Not helpful, but at least he's honest!  I don't think he'd attempt to order anything - he just doesn't know enough about it.

The only two centers in the area are both run by the local hospital.  The one that just started the NX Stage training is about 3 hours away.  It will be a pain if I have to go that far in Michigan winter weather, but I'll do what I have to to get what I want.

[Black]

  Hang in there -- you can do it.  If you weren't stubborn you wouldn't still be alive.

When I spoke to the NxStage home training nurse she told me that since Mike was going to try to do everything himself and I was going to be his "backup" that I would be training with him for only 5 to 7 sessions (they run Mon thru Fri) and then he would be there another couple of weeks.  We're taking the Fifth Wheel travel trailer he used to use in his business travel and staying in a campground, as Charleston is about 4 hours away.  The nurse said when he is ready he will come home.  Then she will be here for his first run - a refresher for me, to make sure our home setup is OK, and to monitor him one last time.

That looks like to me that it should be way less than a month from start to finish.

My advice is to do what I did and contact NxStage directly and ask the Rep for your area to call you.  The contact info is on their website   nxstage.com  I'd call and send email.

BTW, your creatinine is lower than my husband's and the neph just told him on Tuesday that he can wait longer.

Good luck and hang tough.

[JerseyGirl]

Well it's your life, jbeany.  My concern is that you don't wait so long you get yourself acutely ill and wind up in a place you don't want to be.

[charee]

I'm at much the same place my Dr wants us to start training for home hemo soon early December he thought , but I feel pretty good, my fistula is only 2 weeks old and i was hoping to hold off til January which i think i can but he did have a good argument that it is better to do it before i get to sick because that would make training even harder but there is alot to consider we will be away from home for up to 3 months with no income coming in so an extra month to save would help so i will just have to see how it goes and go with the flow i suppose . Good luck with your nxstage training wish we had that down under maybe one day

[Black]

...away from home for up to 3 months...

Why that long?

[Black]

My graft has been in place for a year ...

Why a graft and not a fistula?  Is that why your neph is pushing in-center instead of home?  How long do they expect the graft to hold up with the frequent sticks, and do you plan to have a fistula done?  If so, are you exercising you arm/hand to increase the size of your veins?  Don't let the neph use the graft as an excuse for not considering home dialysis.  A high percentage of patients with grafts can have fistulas!!

[jbeany]

My veins are too small for a fistula.  The last attempt just left me with scars and nerve damage.  This is the second graft - the first one clotted and couldn't be fixed.  I have a really interesting collection of scars and numb spots now.

Well it's your life, jbeany.  My concern is that you don't wait so long you get yourself acutely ill and wind up in a place you don't want to be.

That's why I'm watching my own labs.  If they get out of control, I will start in-center.  Again, stubborn, not stupid.

[Black]

My veins are too small for a fistula.  The last attempt just left me with scars and nerve damage.  This is the second graft - the first one clotted and couldn't be fixed.  I have a really interesting collection of scars and numb spots now. ...

Oh, jeez!  That's awful.  I am so sorry.

One thing to watch for is that sometimes with use the vein above the graft enlarges and a fistula can later be put in there.  That would enable you to get a buttonhole.

[charee]

...away from home for up to 3 months...

Why that long?

They tell us it will take from 6 weeks to 3 months to learn, I'm hoping we will be fast learners but i have a young friend who trained at the same place and it took her the 3 months.

[Black]

... I'm hoping will we be fast learners ...

I hope so too!!!  Someone suggested I try to get a machine manual ahead of time and I'm going to try to do that on Monday when we visit the center.  Maybe you can do that too?

[Rerun]

jbeany - unfortunately if this becomes a power struggle the doc will win.  He holds the degree (if nothing else)  Sucks I know!!  But, call and bug him everyday so you know you did everything in your power. 

Even if you have to go in center....keep bugging them.  Good Luck!   

[charee]

[

... I'm hoping will we be fast learners ...

I hope so too!!! Someone suggested I try to get a machine manual ahead of time and I'm going to try to do that on Monday when we visit the center. Maybe you can do that too?

Sounds like a good idea, my main worry is  sticking myself with BIG needles, I read all the post from all that do it and think shit  I don't know if I can do that ! But if it means doing things at home where I'm in charge I will just have do it...

[JerseyGirl]

Have you ever considered PD?  With small veins and the access problems you are already having you may be a great candidate!

[jbeany]

PD's not an option for me, jersey girl.  I'm a brittle diabetic with gastroparesis.  The glucose in the fluid would not help my already difficult to control blood sugars, and the fluid pressure on my stomach would likely mean I'd never keep anything down. 

[JerseyGirl]

I'll be rooting for you.  Hang in there, my dear!

[jbeany]

frickin' frackin'. . . .. #$%## ....

The saga continues. . .

I got a letter in the mail from dear doc today.  He sent me a release form to transfer my records to the other hospital.  What?  Wait - I thought the local center was working on getting NXstage - what the heck does this mean?  "I understand from conversations with Lisa (the home hemo nurse at the local unit) that you wish to transfer your care to the Traverse City Dialysis Unit so that you may be trained in home hemodialysis. . . "

Well, yes, if that's my only choice, but my last conversation with the nurse ended with her informing me that we were waiting for you to look over the info on NXStage.  What happened in the mean time?

So I called the nurse.  Apparently, doc sent the letter, and then finally decided to actually look at the info on NXStage, and actually talk to the doc in Traverse who is running the NXStage program there (who gave it a glowing review, of course).  So after sending the lovely letter to me, he's decided NXstage might actually be worth using, and that more than just his one PITA patient (me) might benefit from it. (Duh!)

So, I'm still in a holding pattern, waiting for the doc to give the final okay to start up a NXStage program at the local center, and I'm hoping that doc will agree to offer the choice to more patients, since the NXStage reps are going to want more than one patient before they start a program here.

I swear, I'm going to have to drag the whole lot of them into this century, kicking and screaming in protest, just to get some decent treatment.

[angieskidney]

Ya I know what you mean. They don't have Home Hemo yet in my city and it seems the problem is not enough people pushing for it

[Black]

Ya I know what you mean. They don't have Home Hemo yet in my city and it seems the problem is not enough people pushing for it

  Exactly right, and my question has always been, "How to you get patients to demand a machine and care they don't know exists?"  It's backwards!   The patients are very slowly educating the medical community. If it weren't for people like Epoman, and the other posters here, we would still be waiting for Mike's kidneys to fail, get a chest cath, and go to the local center which almost killed a former poster's son.  Grrrrrr!!

I was in line at the bank today and heard a man say he was waiting for a transplant.  Yep, I butted into the conversation, and yep, he's waiting for a kidney.  He had a BAD dialysis session today -- new tech and back to back sessions because of the holiday schedule -- missed the last hour and a half of his session.  All of the veins in his whole left arm are gone -- vein graft scars and the new fistula that was created using that vein was blown the first time it was used!!   I told him about NxStage and gave him all of the website addresses -- hope to see him here.

Another time when we are doing the educating the medical professionals should be doing!!!

[jbeany]

I went to the local center today to meet with the nurse.  She wanted to check out my graft and meet me in person.  She asked me if I drove myself, and seemed very surprised at how healthy I looked.  Apparently, with the doc insisting I needed to start right away, she got the impression I was at death's door.  *sigh*

My little visit didn't do much to encourage me to start in-center there any time soon. Other than one 50ish woman chatting with a visitor, most of them looked comatose and over 80.  All lined up in a row about 6 inches apart from each other and no privacy at all.  Golly, what fun.

The bad news is that I asked about other patients on home hemo.  They only have one right now, and from the way she talked about him, he's been on home dialysis for a long time and they just took over his care when he switched from another center.  They have 3 branches and are the only center available to cover a huge chunk of two or three local counties, and they only have a single patient doing it at home.  Those are not good odds for me getting a NXStage thru my local center.  Long distance training is looking more and more like a possibility.  Hopefully, even if they can't do the actual training, I can work out some way to do my monthly return visits at the local center, and at least save some money in the long run.