I am rejecting my artificial kidney!!!!

[Lucinda]

Went to my neph today and it seems I am allergic - and rejecting - my artificial kidney so they are going to try me on a new type but they say in rare conditions some people can be allergic to dialysis.  That could prove to be a tad unfortunate.   Personally, I have never heard of that before.  Evidently you can be allergic to the fibres in the kidney. Anyhow, I am going to cut my hours for the next few treatments and see if the reduced time helps eliminate the reaction I am having during the treatment.  I rang RichardMel up to let him know what was going on and he said it could only happen to me!  Anyhow, I will go back tomorrow and see what the new day brings.  My neph is now REALLY pushing transplant.  I don't want a transplant so this could get really interesting!!  I'll keep you in the loop.  Much love - Cindy. xx

[RichardMEL]

Well yes Lucinda of course it could only happen to you my dear. You are this amazing, wonderful person who somehow.. life likes to throw curve balls at (mmmm curves... oops, I got distracted  ) - and so far you've come through all the trials and tribulations pretty darn well it seems!!! Amazingly well I think!! So I am almost NOT surprised this seems to be going on. I mean who could go on dialysis, have 600ml taken off and come off 2 KILOS over??!! I mean.. what the...? In a bizarre way it's quite funny really. I know it is serious too.. but as you said on the phone "You're supposed to get a transplant and reject the kidney.. not get on dialysis and reject the kidney" (dialyser I think they're talking about - the artificial kidney). Do you know what type they have been using and what type they will try? I use a FX-80, and sometimes FX-100 (a big one.. you know what they say about guys with big.. dialysers....) Anyhoo how interesting.

At least you can NEVER claim your life is dull, uninteresting and nothing ever happens!! I mean you had your house flood, roof fell in with workman on your bed, you've had all kinds of ups and downs medically with your graft, medications and so on, and now you're rejecting dialysis (but aparently doing better without it anyway). I mean WHAT IS NEXT? I'd almost propose to you just for the amusement factor of it all, but I forget you're already married!! 

Please keep us updated as this "adventure" unfolds. Who knows you may wind up being some PhD case study or even better still the beginning of a dialysis cure!!!  

[Wattle]

Oh Cindy.... Only you could be allergic to dialysis!! I have never heard of that before either.   

Are there more than one type of filter they could try? There must be more than just one.

I know you are adverse to having a tube hanging out of your stomach..... but what about giving PD a go. Even if you think of it as a short term solution. PD really is OK. The tube sucks thats a given but you do get use to it.

Sending hugs. Dialysis is tricky enough without this added crap.   

[charee]

When i did my training we had 2 people allergic to the dialysers , they changed them to a more expensive one  apparently they start us off with the cheaper one and see how we go , i went fine on the cheaper one so hang in there  a different one might make all the difference

[Lucinda]

Thanks guys....and of course RichardMel it is the FX80 that I am allergic to.  They are trying a new one tomorrow so I will let you know what it is.  They have a doctor coming over tomorrow for my whole session so I thought that was pretty good of them to organise that.  I am dropping back to two hours this week and up to three next week but they are keeping me at three hours for a few weeks to get me back into the swing of things.  Hey Richard...you thought you were safe thinking of proposing to a married woman didn't you.  Hey, being the first renal bigamist is quite appealing. Just think...now I am becoming a wiz at priming and needling you could have dialysis at home.  Hey....come back here.....I haven't finished.......  

[Lucinda]

By the way I forgot to mention that it isn't all bad.  My potassium was really low so I stuffed my face tonight with hot chips and banana sandwiches followed by a huge bar of chocolate.  Gross I know but the best thing is that I did it with my neph's blessing. 

[Zach]

There are several types of dialysis filters (dialyzers) available--some more biocompatible than others.  And the type of sterilization used in the manufacturing process can bring about reactions.

Here's just one study:
http://ndt.oxfordjournals.org/cgi/content/full/18/7/1370

Also, several years ago there were allergic reactions to the AN69 Filter by patients taking ACE inhibitors (BP medication).

[RichardMEL]

Thanks guys....and of course RichardMel it is the FX80 that I am allergic to.  They are trying a new one tomorrow so I will let you know what it is.  They have a doctor coming over tomorrow for my whole session so I thought that was pretty good of them to organise that.  I am dropping back to two hours this week and up to three next week but they are keeping me at three hours for a few weeks to get me back into the swing of things.  Hey Richard...you thought you were safe thinking of proposing to a married woman didn't you.  Hey, being the first renal bigamist is quite appealing. Just think...now I am becoming a wiz at priming and needling you could have dialysis at home.  Hey....come back here.....I haven't finished.......

Yes well that figures.. you're alergic to my dialyser so you're alergic to ME!!!! hmm you want to prime my machine and needle me at home?? oooh baby yeah I'll be on the next flight up... along with a few of my bikie mates!!!

xoxoxoxo

[David13]

I hope the new dialyzer works out, Cindy.  Sorry to hear about this.  Keep us updated.   

[Sluff]

Totally weird Cindy but I hope they get to sorting through this correctly.

I would like to hear more about how this guy was working on your house and ended up in your bed. Hmm sounds a little suspicious to me.   

[willieandwinnie]

Lucinda  I just love reading your post. I hope they get stuff figured out fast. Len had problems with the kidney also and I had to flush the machine for at least 15 minutes before I hooked him up. Maybe they could try that. Please let us know how it goes. 

[kellyt]

That sounds maddening!  I'm so sorry, Lucinda.  I hope you get it all worked out and soon!

[twirl]

everytime I leave dialysis I have a headache and green sinus mucus
I am afraid to tell anyone

[kellyt]

Green mucus is never good, Twirl.  Be carefull.   

[G-Ma]

TWIRL....tell someone..nurse, Dr...someone......cheeeezzzzz....   

Lucinda...love your posts and unfailing sense of humor about this thing we call life.....hope the next dializer works and can we please have pictures of you "needling" RM?     

[kitkatz]

Found out I was allergic to certain dialyzer fibers, too in 2004.  It was fun. Fevers of 102 for six months and test after test and emergency room visits like you would not believe.   Lymph nodes inflamed.  Fevers after a dialysis run. A nurse and I finally back tracked it to a dialyzer change in the unit.  Changed me to a different one, wham- all symptoms disappeared!
Weird, huh?

[Slywalker]

I must admit I learn something new every day on this forum.

Lucinda - I hope this gets straightened out soon for you - sounds like you have resceived a bunch of good info to start checking out.

Good Luck

Sandyb

 

[lola]

Cindy my dear only UUUUUUUUUU xoxoxo

[RichardMEL]

I spoke to head Dialysis nurse today (18+ years experience) and she said she'd only ever heard of this sort of thing happening once!

What can we say - Lucinda is unique... but she's our kind of unique and special!!! 

[okarol]

  She is special!
I hope they find a better way for you Cindy!

[MandaMe1986]

Wow!  Well you are very speacial    But I do hope you guys can find something that works for you.  I would hate for transplant to have to come up if you really don't want one. Best of luck!

[glitter]

  hi

[deahuff]

Hi there,
My friend was allergic to all the dialyzers  and had to go on PD, she liked it better because she traveled for work. I have only done hemo. It sounds awful. Hopefully, a different kind works.
Good Luck,
Dea

[paddbear0000]

What kinds of symptoms do you get when you have a reaction to the dialyzer Cindy? I ask because I just started at my new clinic on Monday and have been having a horrible reaction afterward that lasts for a good 24 hours or so--muscle aches, back spasm, vomiting and hot flashes.

[Lucinda]

Hi guys....Sorry I haven't been back to you but I had to go to a writing seminar all day today.  Trying to do a million things at once per usual.  Paddbear...I am so sorry you are having such a bad reaction to your treatments.  I felt pretty much the same and just when I started to feel normal again I had to go back to the clinic for another dose.  My guess is you are also having an allergic reaction.  Are they using the same dialyser they were using at the hospital?   

Yesterday I used a new dialyser and I also took off no fluid and I had no headache and I felt terrific.  Won't really know until I use the same cocktail on Monday if all is OK but I certainly feel much better today. Sounds like Kitkatz also had the same thing happen.

Feels amazing to feel well again.  Did my needles yesterday and for the first time everything with the priming seemed to fall into place so I am in a much better place myself now.  I am starting back at the gym on Monday afternoon as they have cut my hours down to three so it gives me time to go after dialysis training.  I hope I get a bit of a break now so I can get things back to normal.  Because of the hiccups I probably won't get home for about another four - five weeks but I don't think I am going to have too many problems if all goes as well as yesterday.

Love to you all.  Cindy. xxxx