I have to brag for a minute....

[cattlekid]

So I got my labs back from my first month on NxStage. 

Phosphorus is down to a reasonable 4.8
Potassium is at 3.5 (and I eat potatoes at least four times a week!)
Albumin is over 4
Kt/V 2.04
Calcium 9.8

The only number that is on the verge is the hemoglobin at 9.something.  We are going to do a repeat hemoglobin tomorrow and see if I bounce back over 10 to avoid the EPO.  I haven't had EPO in months. 

Guess watching the phos and taking the binders actually works....   

[MooseMom]

You should brag as much as you want!  Good for you!  That K number is particularly good.  I'm hoping you can get your hemoglobin up a bit. 

Good job!

[Whamo]

That's pretty good news.  Keep vigilant.

[lmunchkin]

Very well done!  That is awesome numbers for the first time.  Hey, it will get better too.  How is the process of NxStage been going for you?  Any problems?

lmunchkin

 

[willowtreewren]

Way to go!   

You deserve to brag!

[okarol]

  Great! 

[boswife]

So cool!!!  and hey, can i borrow a bit of that albumin for my hubby   Seems to be his biggest battle..  Doesnt it feel great to know that YOU did it

[Katonsdad]

WAY TO GO.!!!

[fearless]

excellent work my friend!

[Jean]

Good Job!!!! Brag all you want to!!!   

[cattlekid]

The only problem so far with the NxStage is I still can't use my PureFlow.  I am still waiting for the very final test results on the SAK culture, which I should have tomorrow.  I am hoping that all is well and I can stop using the freaking bags.  I'm sick to death of the garbage they create. 

Sticking myself has been going really well - so well, in fact that I am getting my catheter out next week.  Merry Christmas to me!!   

Very well done!  That is awesome numbers for the first time.  Hey, it will get better too.  How is the process of NxStage been going for you?  Any problems?

lmunchkin

 

[mcclane]

congrats 

[amanda100wilson]

You sound like me.  Have been on NxStage for about seven weeks.mm my labs are great.  My PTH which seemed to be spiralling out of contol evenwith big doses os sensipar,isjust above the range that they want, my phosphorous was just below the normal range so probably a decrease in binders coming up.  Above that, I feel great,   For the first time in at least four  years.  It's a wonderful Christmas present to feel so good.

[fearless]

amanda100wilson and cattlekid,

are you doing the extended treatments (several hours)?
also, what point did you have to be with your needles before they let you do it at home?

(just curious.  I'm getting so impatient to get out of the clinic, but I can't even start training til after Xmas, and I don't even have 2 needles in yet.  Feeling a little angry right now too, because I would feel ready for 2 needles if they would let me get the shorter needles, but i got a "no" today on that one, and I'm afraid it's going to be a while before I can safely get 2 needles in my arm)  GRRR!)

[lmunchkin]

Yea, I know what you mean about them bags.  Once you get use to the PF you wont want bags anymore except to travel or emergencys. When the pretty weather is here, I will wheel the cycler out on the deck and use the bags and drain out in the yard. We love being outdoors, so that works out fine for us.  This NxStage has proven to be a perfect fit for us.  It really is not so cumbersome.  You set your own tiimes and after awhile it becomes a part of our lives.

It really is not that bad and like Amanda said, you get to feeling alot better, and that is what's important.  Good luck on your cultures, I really believe they will be okay, sure enough!!!

lmunchkin
 

[lmunchkin]

Fearless, are they giving you any reasons as to why?

Sorry for the intrusion.
lmunch

[fearless]

lmunchkin, no intrusion at all!

I can't believe this, but I'm actually getting paranoid about posting about stuff at my clinic.  I feel like since this is in an unrelated thread, it probably wouldn't be seen, so:  Basically, I've always been very open and confidently assertive with the personnel at my clinic, and it's never been anything but good.  But as the years have gone by, I'm feeling more and more like it's an "us" vs. "them" mentality.  I feel like they "have a file on me" because I ask a lot of questions and make requests that are sometimes different from the "policies".  I feel like they all tale to each other about me and don't talk directly TO me, unless it's as a grown-up addressing a naughty child.  All I really want is to do what's best for my own health, the maintenance of my heart, fistula, etc.  But when I make a request that I believe in is alignment with those desires, i often get a "no" and, furthermore, no good explanation as to why.  i simply hear "this is how we do it and we can't do it your way"  I would be so much more content to go with their directives if they could just tell me WHY?  And although I think at some level it's $, they don't make allowances even when I ask to pay for something myself.  I try to maintain my goals and work towards what I want, but I feel like I have to be very careful or I'll get a "reputation" (if I don't have one already)

Thank you so much for asking me about this.  I really did want to write about it, but, like i said, I was afraid to make a new post!!!
It relieves me somewhat to vent as I just have!
 

[lmunchkin]

Dear, let me say something here, you should not be afraid of anything!  This is your life here!  If they can't accommodate you, then check in to other clinics who will offer self-cannulation.  You'd think you were asking for the moon or something impossible.  And its not like that at all.  You want to do selfcannulation so that you can "Relieve them of their duties" and take control of your own care!

So what if they are "peering in" on your posts.   They put their clothes on the same as you, my friend!  If I were you I would talk with your neph and explain to he/she that you want to start needling yourself cause you want to do it at home.

There are others on IHD, who can tell you of their interactions on this subject.  The clinic that my hubby went to did not say NO to anything and definately gave reasons as to why.

If you want to D. at home (Cause I can guareentee you) and feel lots better, then you should be allowed to and no one should deny you that privelege unless medically warranted.  From what I have read, there is nothing in your posts (but desire) that prohibits you from doing D at home.

I will tell you this, Fearless, once you start and get use to doing it at home, you will never want to go back!  Im not knocking In-Centers per sa, they are there for a purpose, but when a person wants to learn to do things themselves, then by George, they should help out any way they can....lperiod!!!!

Don't give up & don't give in, on your desire to do it at home!  Some of these  clinics really have their nerve!

lmunchkin

[fearless]

sorry lmunchkin, I didn't really explain myself.  My clinic is pretty progressive about home dialysis.  I'll start training for home hemo in January.  What they won't allow me to do is get some smaller needles (shorter than 1") to try to get to using my fistula sooner.  I had read here about how the shorter needles can help those with smaller, shorter, curved or shallow fistulas.  (mine is all of those things)  So right now, even though I'll soon be training for home hemo, who knows when I'll be able to actually DO it?  I may still have one lonely needle in my arm when I finish training!  I found the company that makes the needles and talked to them, and the distributor.  But the clinic has to order the needles, I can't order them myself.  And even though i asked to pay for them myself, the clinic says "no".  The only explanation is: we have to use what the clinic orders.   i have presented my concerns with trying to use two 1" needles, and it's like they don't even really understand what I'm talking about.  I really think that they are more interested in simply staying with their ordering protocol than preventing an infiltration.  "Infiltration?  Oh well, we'll just use the catheter for a few weeks."  But in the meantime, they are very eager to get the catheter out!  Once it's out - no choice but to use the fistula come hell or high water.  Problem with the first stick?  Stick it again!  Infiltration?  Well, you've got to dialyze - stick it again!  UGH!  What about pain and suffering?

Sorry again, but i know I didn't really give any particulars.  I have faith that eventually I'll be in my comfortable home, with buttonholes, taking good care of myself.  But getting to that point is starting to look like an epic struggle.   

thanks again for your reply, and all your encouragement will be transferred to the problem I'm dealing with now with the needles 

[amanda100wilson]

I think that you will have to just tackle them and ask them why they will not let you use short needles.  Threaten to go to another clinic and you may just be able to get them to order them for you.  My clinic ordered the short needles especially for me.  My clinic was sceptical about using them until I was able to produce some samples that I had been given and then they agreed to try them and I actually think that I 'sold' them to my nurse as he has chosen to use shorts on another patient that he has taught cannulation to since.

I am not doing extended at the moment, but that is an issue to deal with down the line.

[lmunchkin]

It's ok, Fearless, I don't always clairfy myself either.  But I just hate to hear how some clinics are so bossy, not all, but some. 
If I recall correctly, when J was D in center, his fistula was fairly new and I believe they used the 1.5" needles 16 gauge.  Now that he does home D he get the smallest needle with a larger (15 gauge) hole. 

Is your fistula shallow or deep?  That may be one of the determining factors as to why the longer needles.  I do hope things get better for you, but do hold your ground, fearless.  You are your own best advocate!!

God Bless,
lmunchkin

 

[fearless]

Thanks! 

amanda100wilson,  if you would: how did you get samples?  The company told me the needles are only available through the distributors, and the distributors told me they can only be ordered by the clinic.  And the clinic says they won't order!  I have asked for the name of someone higher up who is the person who is actually saying "no" because the only people i can ask always have to ask some invisible people, and it's really easy for invisible people to say "no".

Actually when the clinical manager came to me with the "no", my first thought was: maybe I need to check out another clinic.  But my clinic is actually a very fine clinic as far as stats, and I love the tech who is needling me and has promised to help with buttonholes.  i have a lot invested here, and the other clinic in my town is kinda an unknown factor - kinda new and doesn't offer as many different services.

I will figure this out somehow.  With the support and example of strong fellow patients like yourself, I feel so much better than I did earlier today when I was given that calculated "no" (you know, the one that's coated with loving concern and a bit of patronizing)   Thanks so very much!

[kellyt]

 

[Bajanne]

I'm jealous!!!!  Can't remember to take my binders.  I start out well and then after a time, I just stop!  EVerything is quite good except for my phos level (a little high)

[cattlekid]

I am not doing extended.  The labs that you see above are with short daily (5x per week, 2.25 hours per treatment). 

When I started training, I thought that I would be able to use my fistula right away (it was new).  But the surgeon put the kibosh on that.  So I trained for three weeks with my catheter.  I went home with the catheter and then went back for a week when I was on vacation and we started establishing my buttonholes.  The training nurse came to my house every night for a week to continue to establish the buttonholes.  The Friday of that week, I stuck myself flawlessly and then she was confident I could do it on my own. 

The first week went fine.  This week has been good for three days, then Thursday night and last night were nothing but problems.  I ended up in the ER last night because I couldn't get my venous to run properly.  I called the nurse, she said pull the needle.  Well, I had already given myself the heparin so I bled like a stuck pig.  After six packs of gauze, we called 911.  I got to the hospital and everything turned out okay.  My neph was actually on site, so he stopped in and told me that unless my hemoglobin was under 8, they would not transfuse to keep me from getting antibodies.  So my hemoglobin came in at 8.7.  I'm sure I'll be on EPO next week for the first time in months.  But all's well that ends well.  I just hope I can get a better venous stick today!

amanda100wilson and cattlekid,

are you doing the extended treatments (several hours)?
also, what point did you have to be with your needles before they let you do it at home?

(just curious.  I'm getting so impatient to get out of the clinic, but I can't even start training til after Xmas, and I don't even have 2 needles in yet.  Feeling a little angry right now too, because I would feel ready for 2 needles if they would let me get the shorter needles, but i got a "no" today on that one, and I'm afraid it's going to be a while before I can safely get 2 needles in my arm)  GRRR!)