A Dialysis Hating Aussie Chic

[tamara]

Love the site.
Aussie chic 30 years of age at home doing nocturnal dialysis every second night.Have only started doing my dialysis this way and so far I want some sleep!!!!!!!!
Been on dialysis for just over a year been home "doing it" with my partner for 9 months.(Dialysis that is, been doing it with him a whole lot longer hahahahaha)

Waiting on a transplant.waiting, waiting, waiting.....................................................

[Epoman]

Love the site.
Aussie chic 30 years of age at home doing nocturnal dialysis every second night.Have only started doing my dialysis this way and so far I want some sleep!!!!!!!!
Been on dialysis for just over a year been home "doing it" with my partner for 9 months.(Dialysis that is, been doing it with him a whole lot longer hahahahaha)

Waiting on a transplant.waiting, waiting, waiting.....................................................

Welcome to the site, glad you like it. The site is still new less than a month old, so stick around and help us grow. I made this site so people like you and I can come and vent about dialysis. I look forward to reading your posts. So feel free to rant and vent about anything you want concerning dialysis. Or visit our Off-Topic section to discuss anything you want. Once again welcome.

[Epoman]

hello i am a 37 yr old male been on dialysis since 1999.Just started Nocturnal dialysis Sept. 1st.Like you I am Looking forwaed to some sleep.How long did it take you to start feeling better.I have heard it takes up to 3 months.Are you enjoying your new unresricted diet?Sincerely a Canadian Male

Hi 6yr Vet,

Welcome to the board and I hope you come back often. I made this site after seeing so many other message boards about dialysis being really hard to navigate, have members that only post once in a while, or the owners of the board heavily edit members posts. I will never edit a members posts just because it is harsh or because a member is venting his frustrations about being on dialysis.

Do me a favor though. Make yourself a NEW post in "Introduce Yourself". You deserve your own topic to introduce yourself. All you have to do is just cut and paste what you wrote here.

But anyway welcome to the board and I believe we have a couple of Canadians here.

I Moved "6yr Vet's" reply to his OWN topic in the "Introduce Yourself" section. - THE ADMIN

[tamara]

haven't been on dialysis during my sleep long enough yet to get any of the benefits, feel worse because my sleep has gone some place i cannot find.Will let you know when i find it and some form of normality !!!!!!!!

[Bajanne]

You promised to let us know how it is going these days.   Can we hear from you, please???

[tamara]

Hi,
Yes this girl has been mighty slack.Hoping to get more in touch with this site again.

Well it was all going well on home nocturnal dialysis every second night.Was working part time for 20 hours a week, when I needed to have some time off to have a parathyroidectomy. So I had the procedure was recovering at home then got a phone call from my agency that my assignment was ending the fun of a temp!

So am back looking for work, had two interviews today for PERMANENT part time work. I must have been a sight for sore eyes today, had a really bad night on dialysis last night, yes sometimes you get those nights when the machine wants you to stay up with it and all it wants to do is talk to you, you know the beep beep beep.

Thats one of the problems with nocturnal dialysis your too tired to be actually fixing things like you would probably do during the day, so you usually just tell the machine to shut up!!! and want to do mean things to it. LOL.

Unsure if I should mention it here and now,but about my removal of my parathyroids, now I'm  on 12 caltrate a day, and 12 calcitriol.

Its driving me insane, I'm feeling worse because of the levels of those meds that I'm on, even compared to the slash across my neck, and gee no one has asked me if i tried to commit suicide, i thought I could have fun with that!

Anyway do the levels of those meds come down?

Promise will keep in touch will try and be a good dialysis girl.

Tamara.

[Epoman]

Hi,
Yes this girl has been mighty slack.Hoping to get more in touch with this site again.

Well it was all going well on home nocturnal dialysis every second night.Was working part time for 20 hours a week, when I needed to have some time off to have a parathyroidectomy. So I had the procedure was recovering at home then got a phone call from my agency that my assignment was ending the fun of a temp!

So am back looking for work, had two interviews today for PERMANENT part time work. I must have been a sight for sore eyes today, had a really bad night on dialysis last night, yes sometimes you get those nights when the machine wants you to stay up with it and all it wants to do is talk to you, you know the beep beep beep.

Thats one of the problems with nocturnal dialysis your too tired to be actually fixing things like you would probably do during the day, so you usually just tell the machine to shut up!!! and want to do mean things to it. LOL.

Unsure if I should mention it here and now,but about my removal of my parathyroids, now I'm  on 12 caltrate a day, and 12 calcitriol.

Its driving me insane, I'm feeling worse because of the levels of those meds that I'm on, even compared to the slash across my neck, and gee no one has asked me if i tried to commit suicide, i thought I could have fun with that!

Anyway do the levels of those meds come down?

Promise will keep in touch will try and be a good dialysis girl.

Tamara.

I had mine removed, your lucky I needed alot more calcitriol, calcium pills than that, like 2 times more. But to answer your question, eventually you will cut back the dose and then eventually you may need none like me. Your body will adjust and you will need less and less. My calcium runs in the high 6's and mid 7's with NO calcium pills. I had my para and my thyroid removed and it took over a YEAR to get my TSH stable, it was a rough year+.

- Epoman

[Panda_9]

Holy crap tamara that must be awful swallowing that many horse pills!! Im surprised that your still on all those meds being on nocturnal. How many hows do you do?
Epoman, when you say your calcium is 6-7, is that normal? What are the normal values over there? Our norms are 2.25-2.65mmol/L. My levels have been within this range since starting on nocturnal.

[Epoman]

Holy crap tamara that must be awful swallowing that many horse pills!! Im surprised that your still on all those meds being on nocturnal. How many hows do you do?
Epoman, when you say your calcium is 6-7, is that normal? What are the normal values over there? Our norms are 2.25-2.65mmol/L. My levels have been within this range since starting on nocturnal.

Her being on nocturnal has NOTHING to do with why she is taking so much calcium pills, her could kidneys could be WORKING and she would still need that much calcium to survive. She had her parathyriods removed. Which regulates her calcium levels. She still has some parathyroid activity (They usually take out the parathyroids and put a little piece back in the body, usually in the arm). The amount of pills she takes will decrease as time passes and eventually she will need no extra calcium or very little. I had BOTH my thyroid and my parathyroids removed and it took over a year for my body to adjust. I still take TUMS (OTC pill) on occasion, when I feel my calcium is getting to low.

A normal Calcium level is: 8.5 to 10.5 milligrams per deciliter (mg/dL). If you calcium was that low based on milligrams, your heart would STOP!

[tamara]

yeah its awful taking them,but then whats the option.
You don't do what the doctors say, you become non compliant and they treat you like a leper, well you know how it is.

(don't worry what you do to yourself just worry about what they will say lol)

My calcium when it was last checked was 2.1 that was a week ago, I'm not sure what it is measured in.

They removed the parathyroids completely, then they put a little bit of one back in , as far as i know it wasn't in my arm, they only slashed my neck!

Had another blood test when I came off nocturnal this morning, thats one thing that is organised over here. You take your own blood samples when you come off dialysis and then you ring a courier organised through the hospital to come pick them up.
So will be finding out this afternoon if their will be any changes, crossing my fingers .

[Panda_9]

Holy crap Tamara that must be awful swallowing that many horse pills!! I'm surprised that your still on all those meds being on nocturnal. How many hows do you do?
Epoman, when you say your calcium is 6-7, is that normal? What are the normal values over there? Our norms are 2.25-2.65mmol/L. My levels have been within this range since starting on nocturnal.

Her being on nocturnal has NOTHING to do with why she is taking so much calcium pills, her could kidneys could be WORKING and she would still need that much calcium to survive. She had her parathyroids removed. Which regulates her calcium levels. She still has some parathyroid activity (They usually take out the parathyroids and put a little piece back in the body, usually in the arm). The amount of pills she takes will decrease as time passes and eventually she will need no extra calcium or very little. I had BOTH my thyroid and my parathyroids removed and it took over a year for my body to adjust. I still take TUMS (OTC pill) on occasion, when I feel my calcium is getting to low.

A normal Calcium level is: 8.5 to 10.5 milligrams per deciliter (mg/dL). If you calcium was that low based on milligrams, your heart would STOP!

Oh I see, I'm not real up to scratch on the parathyroid thing. Never had much trouble with my calcium levels, although my bone turnover activity is on the high side. My doc asked me a while ago if anyone has spoken to me about getting them out because my parathyroid hormone last bloods was 660 (norm 14-72). I'm on calcitriol twice a day.
I figured your blood levels were read differently to ours, thats why I asked. I thought OMG 6-7 isn't good!!    Ours is in mmol/L. I wish they would do it all the same. They have changed how creatinine used to be read, and each doctor reads it differently, which can get confusing.

[Panda_9]

yeah its awful taking them,but then whats the option.
You don't do what the doctors say, you become non compliant and they treat you like a leper, well you know how it is.

(don't worry what you do to yourself just worry about what they will say lol)

My calcium when it was last checked was 2.1 that was a week ago, I'm not sure what it is measured in.

They removed the parathyroids completely, then they put a little bit of one back in , as far as i know it wasn't in my arm, they only slashed my neck!

Had another blood test when I came off nocturnal this morning, thats one thing that is organised over here. You take your own blood samples when you come off dialysis and then you ring a courier organised through the hospital to come pick them up.
So will be finding out this afternoon if their will be any changes, crossing my fingers .

2.1 if going by QML's ranges is on the high side of low. Normal is 2.25-2.65. I get my post bloods picked up too, it is so convenient. I dont drive and my partner does shift work so in the mornings he is either at work or in bed after working late, so I just get them to pick it up.

[Epoman]

Holy crap Tamara that must be awful swallowing that many horse pills!! I'm surprised that your still on all those meds being on nocturnal. How many hows do you do?
Epoman, when you say your calcium is 6-7, is that normal? What are the normal values over there? Our norms are 2.25-2.65mmol/L. My levels have been within this range since starting on nocturnal.

Her being on nocturnal has NOTHING to do with why she is taking so much calcium pills, her could kidneys could be WORKING and she would still need that much calcium to survive. She had her parathyroids removed. Which regulates her calcium levels. She still has some parathyroid activity (They usually take out the parathyroids and put a little piece back in the body, usually in the arm). The amount of pills she takes will decrease as time passes and eventually she will need no extra calcium or very little. I had BOTH my thyroid and my parathyroids removed and it took over a year for my body to adjust. I still take TUMS (OTC pill) on occasion, when I feel my calcium is getting to low.

A normal Calcium level is: 8.5 to 10.5 milligrams per deciliter (mg/dL). If you calcium was that low based on milligrams, your heart would STOP!

Oh I see, I'm not real up to scratch on the parathyroid thing. Never had much trouble with my calcium levels, although my bone turnover activity is on the high side. My doc asked me a while ago if anyone has spoken to me about getting them out because my parathyroid hormone last bloods was 660 (norm 14-72). I'm on calcitriol twice a day.
I figured your blood levels were read differently to ours, thats why I asked. I thought OMG 6-7 isn't good!!    Ours is in mmol/L. I wish they would do it all the same. They have changed how creatinine used to be read, and each doctor reads it differently, which can get confusing.

If your PTH continues to rise, be sure to consider getting those suckers removed. You don't want to end up in a wheelchair like me.  660 is not to bad, my PTH was 3,500+  and that is measured the same way as yours. Normal here is about 14-72 too.

- Epoman

[Panda_9]

In march it was 530, last level was 660. I will be keeping an eye on it. Had calcitriol dose upped in the last few months so see how it goes. Im only on 2/day at present. They are pretty good here at watching our levels, got an appointment next week so they can go through those results then. Just had my 6 monthly ream of bloods.

[tamara]

Yeah!

Congratulations to Me!

I joined September 1st 2005 so it's taken me 358 days, but I'm no longer a Newbie.

I'm a Junior Member!!!!!

Cool...........................

[Rerun]

Congratulations Tamara!   

[Sluff]

Welcome

[Russ]

 

[tamara]

Gee thought I would celebrate, finally hit 200 posts yipee!

 

[Zach]

Congrats!!
 

[anja]

   WOO-HOO !  Not even a year!  Always enjoy your posts.   

[tamara]

Just thought I would do a bit of an update.

Been doing nocturnal for nearly two years now, the change has been worth it, more energy, more time during the day, able to work more, etc.

Allan my man and I are in the process of a transplant workup with the op to occur in August-September.

He is not a blood match, so there will be plasma exchange due beforehand and a few other things, but all going well should be good to go.

Finally down to 80.5 from 105 kilograms at my heaviest, they want me under 80 kilograms or BMI of 30 for the op.So very close!

So see the tranplant co-ordinator on the 10th April for a blood test and a bit more info on everything so will do another update then.

Tamara xxx ooo

[Wattle]

  Well done Tamara. Thats a great achievement to loose that much weight. Your transplant will be worth the hard slog.

   Allan sounds like a gem. He will finally get the boxes out of the garage!!!   

[tamara]

Thanks Wattle, yep he will finally get his wish! LOL

[charee]

Well done Tamara thats great I have to loose about the same maybe abit more  hoping that when i start dialysis next month i will have more energy to exercise . Good luck with the rest on the tests.