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Author Topic: THE "UNWELCOME" I RECEIVED  (Read 13108 times)
jbeany
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« Reply #25 on: December 31, 2011, 02:00:32 PM »

yajokha, if I understand correctly why you are upset, it's because you posted an intro, and then saw other posts answered, perhaps even other intros answered, before anyone replied to yours.  I can see where that would seem unfair, but perhaps I can explain why it probably happened that way. 

Many of us who post on here regularly hit the same button whenever we log back in - that's the one at the top that says "Show new posts since last visit."  That gives a listing of every post that someone has added to or started since the last time you logged in.  I can't say for sure how everyone else does it, but I tend to skim down the list, looking for posts where I've been carrying on a conversation and I look at those first to see if anyone responded to what I had to say, or asked me a question.  A lot of the time when I log in, I've only got a few minutes to answer posts.  I'm on here when I'm between chores, waiting for the dryer to finish, or the oven timer to go off.   Sometimes I get interrupted by the phone, or an email, or an instant message.  Sometimes I'm doing homework, and I've given myself a 10 minute break to clear my head.

And yes, to be honest, I do tend to look at posts from the people I know best, first.  Or at least try to read and answers ones that are titled "HELP!!!" or "NEED ADVICE PLEASE" before getting to intros or news articles.

And then my 10 minutes are up, and I log back off.  When I log back in again and have time to go to intros, a more recent one might now be at the top of the list.  So it's easy to answer a newer one before an older one.  It's not meant to be offensive to anyone, it's just human nature to start at the top of the list. 

A couple of other things you also have to remember about IHD.  This is a bulletin board, not an instant messaging site.  Not even the moderators and the admins get second by second updates when something is posted.  We all have to log in to see the new posts.  Some members log in daily, others log in rarely, so not everyone sees new posts every day.  Also, a lot of members simply never answer intros.   I didn't until I became a moderator.  Before I was asked to moderate, I only looked back at intros when someone really became an active member and I wanted to know their background.  Hey, there are over 6000 of us on here - it's hard enough to keep track of the history of the ones I communicate with every day!

So try not to take the lack of responses to your original intros personally.  I assure you it wasn't meant to be an insult on anyone's part.

jbeany, Moderator
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« Reply #26 on: December 31, 2011, 02:15:16 PM »

Okay, so Poppy has had a little bit more vodka than usual (I'm allowed, it's NYE, and I HATE NYE!) but this thread has made me cry. 

yajhoka (I really like your name, btw), I'm sorry that you felt unwelcomed.  I'm afraid that I visited your intro thread and didn't respond, but I know I may have done to somebody who posted after you so I feel partly responsible for making you feel unwelcome.  That wasn't my intention (sometimes, if I'm unsure of what to say I don't say anything, but realise now I should have at least welcomed you) and I wholeheartedly take this opportunity to welcome you here. 

Please don't give up on us. 

The best thing about this site is that (even if the introductory passage has been a little rocky) we are always here for each other and (usually) most things are forgiven, just like in real life when we make a mistake.  You were unhappy and thus defensive, and long-term members were defensive too and it all gets out of control and then Poppy cries ...

You are more than welcome here.  I think it's amazing that you don't have to do dialysis at the moment.  And regardless of that you must have so much to share and anything you post could be beneficial to anybody else, even those who just lurk. 

Perhaps it would be helpful if this thread could be removed/deleted, okarol?  (Not sure I'm asking the right person!) That way yajhoka gets to start afresh and all the quibbling can be put to one side. 

Poppylicious, going back to her vodka in an attempt to escape reality.
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- wife of kidney recepient (10/2011) -
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Everything was beautiful, and nothing hurt.
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« Reply #27 on: December 31, 2011, 02:24:52 PM »



Perhaps it would be helpful if this thread could be removed/deleted, okarol?  (Not sure I'm asking the right person!) That way yajhoka gets to start afresh and all the quibbling can be put to one side. 


We never delete posts, but at the request of the person who started a thread, we have, on occasion, moved them off the board to the admin area.

okarol/admin
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
kristina
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« Reply #28 on: December 31, 2011, 02:36:22 PM »


@MooseMom & Kristina while being treated for ESRD I was given Demadex (generic Torsemide) and from my understanding water pills coerce the kidneys into working. The doctor said the less you use the kidneys the faster that they die. So they decided to put me on a super regime which included 2 100mg torsemide pills daily. That is the only thing that they have given me to make me think that, that would be the reason why after less than a year on PD that my kidney function went from 10% to 22%. The mass on my kidneys will not be removed until I have my transplant or if it becomes cancerous. Yes ma'am I still take Lopressor to control my BP and the Demadex daily but, they cut the Demadex down to 1/2 a pill daily instead of the 2 a day. No problem ask away!

Thank you, yajokha75 for the kind information about the diuretic Demadex (Torsemide), it is very much appreciated.
It is quite amazing that your kidney-function improved from 11% to 22% within a year with the help of this diuretic.
(I use a little portion of asparagus every day for lunch as a diuretic).

I wonder how much liquid you were drinking during that time and how was your weight?

When your kidney-function improved, did you increase the amount of daily liquid?
Or did you just continue with the same amount of liquid as when your kidneys were functioning 11%?
(I drink about 2¼ litre of liquid every day & my weight is 53 ½ kilos; my pre-Dialysis kidney-function is 12.3%).

I do wish you the best of luck with your kidneys and I do hope you enjoy their function for a long time to come
and I do hope we can exchange our experiences here on IHD.

Thanks again for your reply and best wishes from Kristina.

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pitagory
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« Reply #29 on: December 31, 2011, 02:59:39 PM »

WOW
Some times these days some people get in a very offensive mood!
or they feel lonely and not appreciated enough who knows
oh well I hope that she gets all the attention she want in another forum so she can be happy :waving;
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« Reply #30 on: December 31, 2011, 03:42:04 PM »

Just out of curiosity, I checked her profile.  She did sign up on Dec 18th, but didn't post until yesterday.  Her first post was about 7 hours before she started this thread, so she really didn't give us enough time to say anything, especially considering the time of year.

I do hope she gives us another chance.  Her story is an amazing one that I'd like to hear more of.  Her situation is downright miraculous, even if she does have to go back on dialysis at some point, and something most of us can only dream of
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
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yajokha75
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« Reply #31 on: December 31, 2011, 03:54:47 PM »

Right Cariad I see how you are LMAO. I like how you take my words and determine what I said or meant. Why would anyone be jealous of another? Mo would definitely be happy for anyone who could beat this. And I'm ecstatic that you have been cured. So I am assuming that you really think I attacked first? Nope sure didn't go back and reread the posts. Then come back and tell me who attacked who first. I'll wait.  One more thing why should I be angry? The anger stage is over. I accept it for what it is.
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ToddB0130
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« Reply #32 on: December 31, 2011, 04:14:56 PM »

yajokha75 --- I say it's time to move on from your original post on this thread.  For every one.  As you can see from a number of the later responses in the thread,  there are people genuinely interested in your story and who  would like for you to participate in the forum.  But ultimately that is your choice.   Let's stop with the 'he said/she said' replies at this point.  Everyone can agree that this thread started off badly in many respects,  but ultimately the people on this board are caring and there is a lot of information to be shared.  Also,  there are lots of threads where people just tried to have fun and get out of their daily dealings with these illnesses.  There are a lot of really smart folks on this board and there are plenty of heated, intelligent dialogues as well.

As in life, can't change the past.  Deal with the present and move forward.  I hope this board can become a place that helps you in your journey and allows you to help others as well.  If not,  I do hope you find the right place for support that works for you.   Best of luck.
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cariad
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« Reply #33 on: December 31, 2011, 04:15:29 PM »

I am so honored that I got a mention in her third "third and final" post.

Perhaps you should also look up final. To use the vernacular of the internet, this is the longest flounce I've ever seen.



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yajokha75
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« Reply #34 on: December 31, 2011, 04:27:43 PM »

@jbeany Thank you that is exactly what I was upset about. You hit the mail on the head and now I have a true and clear understanding. Thank you again. Honestly I have gained information from this site as I was a lurker before I joined. There are people on this site that totally ignore the offhand comments that were made and are legitimately concerned. See the ultimate thing I want is that support from individuals like me. I DIDN'T post anything to start a beef, I thought that you should/could post your thoughts about any situation pertaining to D. I guess not. :o


 
@Kristina I didn't know that asparagus was a veggie diuretic, you learn something everyday. To be truthful I never really controlled my fluid intake only when I did hemo, I was always thirsty and felt like I would've been prediabetic because of it. I would drink a lot of water and yes I did gain a lot of weight around my stomach and it effected my dry weight. I'm working on that though . I want to thank you for disregarding the back and forth discussion and seeing what I was truly trying to point out.




Cariad you are a hater and please do not respond to me again. You are petty and I don't like you. You can post on anyone else's but not mine. I AM sick of going back and forth with you. Let it in because I HAVE and I don't want to have to deal with it anymore. Leave me alone you did not have to respond in the first place. I thinks it's you who is all in their feelings now. CTFU lol LMAO.
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Desert Dancer
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« Reply #35 on: December 31, 2011, 04:45:36 PM »

Cariad you are a hater and please do not respond to me again. You are petty and I don't like you. You can post on anyone else's but not mine. I AM sick of going back and forth with you. Let it in because I HAVE and I don't want to have to deal with it anymore. Leave me alone you did not have to respond in the first place. I thinks it's you who is all in their feelings now. CTFU lol LMAO.

This simultaneously vile and laughable statement is proof positive that you have not done one. damned. thing. to get to know the members here. Too much effort to click on someone's profile and read through their posts, find out who they are, what they've struggled with, why they might be a great source of information and comfort? Of course, because you're not interested in anyone here; they're only supposed to be interested in YOU, YOU, YOU.

Incidentally, you don't get to decide who responds to you, but I guarantee you will never hear from me again. See, I've found the best way to deal with temper tantrums is to ignore them. You've stamped your little feet and gotten the attention you demanded from the adults in the room, so you ought to be happy, but no. Here you are in someone else's home, still flinging poo at anyone who disagrees with you and with nary a shred of self-reflection or humility. It couldn't POSSIBLY be your attitude, no, you're not responsible for anything; it's the other 6,000 members on here with the problem.  First you're going to take your ball and go home because we all ignored you, then it was because we were all meanies. Really, you can't have it both ways.

Go ahead now and call me all the names you like, dear. Unlike you, I've grown a thick skin during my years of life. I just have one question: does your mommy know you're using her computer?
« Last Edit: December 31, 2011, 05:07:07 PM by Desert Dancer » Logged

August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

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« Reply #36 on: December 31, 2011, 06:44:00 PM »

This thread is like a car wreck..... can't stop reading it LOL   

OMG what a drama queen
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« Reply #37 on: December 31, 2011, 07:12:03 PM »

I can't stop reading it either!!  It takes a while sometimes for people to answer posts.  I never go to the intro section-don't have the time!!  Most of us on here have busy lives and no time to read every post.  I usually just read the general  and the caregivers threads. 

Yajokha, the way you spoke in your first post really put people's backs up I think.  Even in real life conversations nobody likes things like that to be said and they usually retaliate. On public forum sites like this you had better have a tough skin because people are free (for the most part) to respond the way they want and it may not be what you want to hear.  I have found this site very supportive and the people very friendly. 

I think it is time for a fresh start and to stop the name calling.  Start a new thread and deal with the issue instead of the anger.
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« Reply #38 on: December 31, 2011, 07:39:35 PM »

LISTEN UP:

You can disagree with another member's opinions and discussions are encouraged, but do not go off-topic and attack the person rather than their opinion.

okarol/admin
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
galvo
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« Reply #39 on: December 31, 2011, 07:40:18 PM »

This thread has given me a good laugh to start the new year. But I'm over it now. So all I can wish you, yajokha, is the Aussie blessing that 'May all your chickens grow up to become emus, and kick your dunny door down!'

 :bestwishes; :guitar: :sir ken;
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Galvo
cariad
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« Reply #40 on: December 31, 2011, 08:45:38 PM »

This thread is like a car wreck..... can't stop reading it LOL   

OMG what a drama queen
Riverwhispering, I know! It has that "can't look away, just so sad it's funny" quality to it. I don't think we've met, but I like you already....
I can't stop reading it either!!
Addicting, isn't it?
This thread has given me a good laugh to start the new year. But I'm over it now.
Me too, galvo. Love your Aussie blessing! You always have such a way with words.... :beer1;

This simultaneously vile and laughable statement is proof positive that you have not done one. damned. thing. to get to know the members here.
So laughable that Gwyn very nearly had iced tea spewing out of his nose when I read it to him. Our favorite line so far "You are petty and I don't like you." Reminds us of our five year old.... 3 years ago. :rofl;
Incidentally, you don't get to decide who responds to you,
True. Although she was so generous in granting me her permission to respond to anyone else's comments that I am going to follow your lead and give her just what she's requested. No more replies from me.

Karol, thanks for trying to stop the madness. I am sorry that you have to monitor this thread New Years Eve of all times.

It must be horrible to have to marinate in your own anger like this, yajokha. Once again, you have my pity.
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

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« Reply #41 on: December 31, 2011, 08:50:56 PM »

well, look what happens when i go and get a life offline!! lol
for starters,
 :welcomesign; and sorry, i havent been on in a while, but i recently gained a life ;) its been a while since ive had one of those!!! Its great that u are doing better, i hope u find that this new year u stay well!

and... that being said, i think all of this has gotten waaaaay out of hand. for more than one reason.
whether or not this person truly felt sad about not getting a warm welcome asap, or not, and whether or not this person handled it in a ... well... childish kind of way.... it was her feelings.... we should *try* to respect that, even if it does make us want to... put them in the corner?

ITS THE HOLIDAYS.... who here isnt insane during this time of year? family sucks, lack there-of sucks, and i know im certainly under undue stress this time of year.
SO reguardless of who did what to whom and why, lets all just start over?
IF this person is just a troll, we will soon find out, but most likely (and hopefully) it was just the holidays that caused them to feel this way.

cant we all just get along? pwease?

and a small unimportant side note, there have been times i have posted and it taken a while to hear word from anyone, but think of how many posts are posted here every day? and most of us dont have time to sit in front of the computer all day to answer every single one. im very guilty in not welcoming the intros... mainly because there are sooo many, all the time, and i just dont have time to do that, plus everything else, and still keep up with posts im active with! I havent even looked at new posts in about a month, because the holidays have me going insane.... hell in 2 days i made over 70 ornaments, wrapped an assload of presents, baked cookies, made dinner, shopped, thats just 2 days... then all the travelling that was had... eeep!

so please :) lets get along!

Also... I have met(offline!)any of the people that have contributed to this thread, and they are truly lovely wonderful people, and while i think they were defensive (rightfully so...) you did kind of come off as a troll. or in other words, someone looking for attention. and maybe u need the attention, the holidays usually leave me feeling lonely... so if u need someone to talk to, please feel free to talk to me.

Happy new year
 :welcomesign; :welcomesign; :welcomesign; :welcomesign; :welcomesign; :welcomesign; :welcomesign; :welcomesign; :welcomesign; :welcomesign; :welcomesign; :welcomesign; :welcomesign; :welcomesign; :welcomesign; :welcomesign; :welcomesign; :welcomesign; :welcomesign; :welcomesign;

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MooseMom
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« Reply #42 on: December 31, 2011, 09:09:46 PM »

Yajokha, I don't know anything about diuretics, so I am going to start a thread over on the "Pre-dialysis" forum and hope you will try to answer some of my questions. 

Let's all try to forget this thread and chalk it up to the stress that comes with balancing a scary illness with the holidays.

I'll admit it...I think if I had posted an introduction, spilling my guts, and no one responded, I'd have been devastated.  To be fair though, when I first joined IHD, there were FAR fewer new members joining each day.  Lately, there are so many new members that I just can't keep up with you all, and so I offer my apologies if I have missed someone and have failed to welcome you.  So many new members, and right here during the holidays when people are so busy...no wonder someone might have felt ignored.

Yajokha, to be fair and honest with you, Cariad and Desert Dancer have so much knowledge and so much willingness to share it.  Cariad has been part of a clinical trial of which the result is that she has been transplanted with a living donor kidney and after a year is now off all immunosuppressants!  Can you imagine the courage that took?  And Desert Dancer is one of our resident experts on living with nocturnal home hemodialysis.  I have asked her so many questions about it that I'm sure she thinks about running the other way when she sees me approach! :rofl;  She is the embodiment of what all dialysis patients can aspire to be.  So, these are people who are courageous and generous, and I would really hate to see you deprive yourself of what they can offer you.  They certainly do not need me to "defend" them in any way, but I wanted you to have a sense of who these people really are, just as we are eager to see who YOU really are.  Please give  us a chance to get to know you better, and vice versa.

Now, on to the fascinating topic of diruetics... :clap;
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« Reply #43 on: January 01, 2012, 03:10:55 AM »

[ posted without moderator's hat n mittens on - just my personal opinion ]

Some very interesting contributions here, not including aussie blessings (Galvo, I've never heard that particular one... lol) and some, shall we say, "robust debate" between some members. Perhaps the original advice from the OP to "chillax" (ugh I hate that term) should be taken up.

Jennifer with the new life (aka bf :) ) and some others have the right idea I think - either move on and contribute to the site in a normal way, or not - the choice is yours. I personally feel it's harsh to post an intro and get upset with no response in 7 hours. Heavens I am on the other side of the world from Georgia, I may have been in bed - others are all over the place. I'm sorry ypu were upset but getting upset about a lack of responses in 7 hours is,. in my view, as petty as you have suggested Cariad is. And she most certainly is not, as I sit here drinking from a 1L bottle of water given to me by dear Cariad and her lovely husband.

Anyway as Riki said some of us don't read certain discussion areas which are of little relevance to us personally. For mine I don't comment on PD matters -I've never done it, and I stay away from the US Health care system and so on. I try and welcome people where I can, and comment on stuff I have experience in which is hemo and transplant. So there will be times when some people don't see all posts, and others don't have time to respond to everything. It's not personal. That's just the way it is.


It's up to you if you want to go find another forum, but many regulars are on multiple forms (not me though, I barely have time for the one!) so be careful to not burn too many bridges. We're a pretty easy going lot, but constantly picking fights and/or being agressive doesn't appeal to many.

Anyway it's a new year, let's not anyone start it off on the wrong foot. So let's "chillax" and concentrate on what's important here - that's people's health and ways to beat this disease, or at least  make the most of living with it that we can.
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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« Reply #44 on: January 01, 2012, 03:13:59 AM »

oh by the way - TODD!!! I sense you are turning into the "new" me with your very considerate and measured post. I am honoured, mate!!! :)

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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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« Reply #45 on: January 01, 2012, 05:04:28 AM »


@Kristina I didn't know that asparagus was a veggie diuretic, you learn something everyday. To be truthful I never really controlled my fluid intake only when I did hemo, I was always thirsty and felt like I would've been prediabetic because of it. I would drink a lot of water and yes I did gain a lot of weight around my stomach and it effected my dry weight. I'm working on that though . I want to thank you for disregarding the back and forth discussion and seeing what I was truly trying to point out.



Thanks, yajokha75 for your kind reply.

Yes, Asparagus is a vegetable diuretic and it has been working very well for me over the past few years.
(I can’t take diuretics in tablet-form because of my drug-intolerance and my many allergies to tablets and medications).

But mind you, Asparagus has to be taken very carefully because Asparagus contains a lot of potassium.
 
I eat about 4 freshly cooked Asparagus every lunch and cook them in plenty of water
to “drain-out” as much of the potassium as possible...

I only eat my Asparagus at lunch instead of dinner because I want to be able to sleep at night
instead of “constantly going for walkies” during the night...

Interesting what you write about your fluid-intake...
I drink the same amount of fluid every day and I weigh myself every morning.
That is an easy way to check myself whether or not I suffer from any fluid-retention.
So far I have been very lucky and only suffered from fluid-retention at the time
when I was diagnosed with ESRF in August 2006 when I was told I would be on Dialysis within 6 months...
Luckily for me this medical prediction has not been accurate and I am still pre-Dialysis...

Thanks again and best wishes from Kristina.

« Last Edit: January 01, 2012, 05:07:00 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
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« Reply #46 on: January 01, 2012, 09:40:58 AM »

yajokha75, sometimes it is difficult joining a well established forum. Please be patient and realize there are over 6000 members here and although they are not all active, members come and go because of changes in their health status, living environment and yes sometimes just not a good fit with the forum. I hope you find what you are looking for here, but if not then I hope you find it somewhere.

Personal attacks will not be tolerated. Resulting in banning of the members involved. Moving forward.

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« Reply #47 on: January 01, 2012, 11:41:43 AM »

I was thinking it might be best if she just logs out and makes a new name and starts over.  And this time turn off the  :rant;
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« Reply #48 on: January 01, 2012, 11:51:12 AM »

Actually, if she pulls her nose in a bit, with her experiences, she could be a great addition to the site.  I mean, how many of us come off dialysis, after suffering CKF, without transplant?  Not many.  Even if it's temporary, she's living the dream.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
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« Reply #49 on: January 01, 2012, 03:47:52 PM »



Hello again, yajokha75,

there is another question I would like to ask you:  Do you live in a hard or a soft water area ?

Is the water you drink hard or soft water? Hard water is water that contains an appreciable quantity
 
of dissolved minerals (like calcium and magnesium) – this water makes less suds with soap

and scale forms more easily in the kettle.

Thanks again from Kristina.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
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