I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: yajokha75 on December 30, 2011, 07:53:13 PM
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:sarcasm; THIS WILL BE MY THIRD AND FINAL POST TO THIS SO CALLED FORUM FOR DIALYSIS PATIENTS. I DO WANT TO SAY THANKS FOR THE WARM AND FUZZY WELCOME THAT THIS SITE HAS GIVEN ME, IT JUST MAKES ME FEEL SO GOOD ON THE INSIDE!!!! :sarcasm; I WILL DEFINITELY LOOK FOR ANOTHER FORUM THAT WILL ANSWER MY QUESTIONS AND MAKE ME FEEL AS THOUGH I AM APART OF THE COMMUNITY. I'M FEELING AS THOUGH PEOPLE DON'T LIKE TO SEE ANOTHER PERSON DEFY THE ODDS. THANKS FOR NOTHING IHD I PRAY THAT EVERYONE EXPERIENCING THIS DEBILITATING DISEASE CAN CONQUER IT AS I DID. GOD BLESS YOU ALL AND HAPPY NEW YEAR I WILL LOOK ELSE WHERE. :2thumbsup;
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Sorry you felt unwelcomed. But, what I read is you are not on dialysis anymore. :yahoo; 4 you! You are one of the lucky ones. I hope you stay stable and off dialysis. You must be ecstatic.
I'm happy for you! :yahoo;
Rerun, Moderator :cuddle;
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Am I missing something, yajokha75? You have posted three times; all of them to-day and you are in a huff because nobody has yet answered your questions or made you feel 'part of the community'!!! And what's more, you have conquered renal failure!!!!
Errr, well done, bye bye, and don't let the door hit you in the bum on your way out.
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Errr, well done, bye bye, and don't let the door hit you in the bum on your way out.
:rofl;
Yeah, plus Rerun did respond. Twice. It's the week between Christmas and New Year, but I guess we all have nothing better to do than sit in front of our computers waiting to encourage new members with no renal problems. :urcrazy;
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So sorry for your discovery that the universe does not, in fact, revolve around you. It must be devastating.
Don't let the doorknob hit you. It would totally ruin your flounce.
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Hey --- I never got my secret decoder ring when I joined either ..... WTF ??? Ha. Just kidding. Had some computer problems and am glad to be back. Hope everyone has had great holidays thus far. One more to go !
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I hate the idea of anyone feeling unwelcomed. I just read your introduction post, and am I right in saying that you were on dialysis for two years but now are not, yet it is only today that you joined? Is that right? Or am I mistaken?
I would be very eager to know how you were cured of a chronic kidney problem that required two years of dialysis!! Can you tell us more?
Like another poster tried to point out, this is the holiday season, and a lot of IHD members are busy and perhaps have not seen your other two posts. I know I have just seen them. It might be nice if you could be a bit more patient.
Congratulations on your new dialysis free life! Enjoy!
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WHOEVER RESPONDED WITH THE SMART COMMENTS I DIDN'T ASK FOR ALL THAT. NOW TO ADDRESS GALVO I'M SORRY THAT YOU ARE SO UNHAPPY ABOUT YOUR SITUATION.(THAT'S ALL I WILL SAY TO YOU). MOOSE MOM NO I JOINED LAST WEEK AND IT TOOK A FEW DAYS TO BE ACCEPTED, RIGHT AFTER MY ACCEPTANCE MY DOCTORS OFFICIAL TOOK ME ANDCOMPLETELY OFF OF PD. I CANNOT FOR THE LIFE OF ME TELL YOU WHAT HAPPENED BECAUSE I TRULY DO NOT KNOW. LIKE I SAID BEFORE I STARTED OUT ON HEMO BUT MY BODY REJECTED IT AND WE TRIED THE PD. AND IT WORKED FOR ME. THANK YOU! DESERT DANCER IT'S SAD THAT PEOPLE LIKE YOU EXIST NO SYMPATHY FOR SOMEONE WHO SUFFERS FROM THE SAME THING THAT AILS YOU. TSK TSK... REGARDLESS OF MY CIRCUMSTANCES IT'S NOT LIKE I AM FULLY CURED I STILL AM GONNA BE MINDFUL OF MY NUMBERS & I WILL EVENTUALLY BE BACK ON DIALYSIS AND UP FOR MY TRANSPLANT. YOU AND I KNOW AS WELL AS EVERYONE ELSE THERE. IS. NO. FREAKING. CURE!!!!!!!! NOW ??? WTF THAT!!!!! LLAB AT THE COMPASSION OF SOME PEOPLE BUT I GUESS THAT'S YOUR NATURE. CARIAD AND ARE YOU SERIOUS?!?!? YOU MUST BE IGNORANT TO THE FACTS OF KIDNEY FAILURE TO SIT THERE AND THINK THAT I DO NOT HAVE REAL KIDNEY PROBLEMS. HA I LAUGH AT THAT, YES I STILL HAVE A MASS ON MY LEFT KIDNEY AND SCAR TISSUE FROM WHAT I DO NOT KNOW AND I HAVE A BIOPSY EVERY YEAR TO MAKE SURE THAT THE MASS IS NONCANCEROUS, SO DON'T THINK THAT BECAUSE I AM DOING WELL NOW THAT I WON'T BE SOONER OR LATER. THERE IS NO GUARANTEE!
THIS IS WHY I DO NOT FEEL WELCOMED BECAUSE OF PEOPLE LIKE THE ONES THAT RESPONDED NEGATIVELY. AGAIN MAY BLESSINGS FLOW FROM ME TO YOU!
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Acute kidney failure can be reversed and the patient removed from dialysis. Sadly the majority of kidney patients have chronic failure and need dialysis to replace their function.
Good luck to you.
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MS KAROL, NO MA'AM IT WAS CKF IT HONESTLY SHOULDN'T HAVE REVERSED ITSELF. I HAVE BEEN HOSPITALIZED WHEN 1ST DIAGNOSED IN 09 EVERY HOLIDAY WITH A STAY FOR 2 WEEKS OR MORE. IT WAS TRULY A TRAGIC SITUATION. BUT I WAS PROACTIVE IN MY HEALTHCARE AND I KNEW I COULDN'T LET THIS BEAT ME. MY CHILDREN NEED ME SO I MADE SURE THAT I FOLLOWED PROPER PROTOCOL. I JUST KNOW THAT I FOLLOW DOCTOR'S ORDERS. FRESENIUS DOCTORS HERE IN ATLANTA GEORGIA ARE THE GREATEST. THEY WANT THEIR PATIENTS TO REACH THIS STATUS. IT'S TRULY A BLESSING TO ME AND MY FAMILY FOR BETTER HEALTH.
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I think you feel "unwelcomed" now after people have replied to your posts is because you made them feel defensive. You started posting and without giving it some time you are blaming members for not "welcoming" you within the same few hours you posted. I just joined recently too and I must say I have never felt so supported in my life. Please give IHD a chance.
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MS KAROL, NO MA'AM IT WAS CKF IT HONESTLY SHOULDN'T HAVE REVERSED ITSELF. I HAVE BEEN HOSPITALIZED WHEN 1ST DIAGNOSED IN 09 EVERY HOLIDAY WITH A STAY FOR 2 WEEKS OR MORE. IT WAS TRULY A TRAGIC SITUATION. BUT I WAS PROACTIVE IN MY HEALTHCARE AND I KNEW I COULDN'T LET THIS BEAT ME. MY CHILDREN NEED ME SO I MADE SURE THAT I FOLLOWED PROPER PROTOCOL. I JUST KNOW THAT I FOLLOW DOCTOR'S ORDERS. FRESENIUS DOCTORS HERE IN ATLANTA GEORGIA ARE THE GREATEST. THEY WANT THEIR PATIENTS TO REACH THIS STATUS. IT'S TRULY A BLESSING TO ME AND MY FAMILY FOR BETTER HEALTH.
We have had a couple members who were off dialysis for a period of time. I wish my daughter's CKD would reverse, but her transplant is failing and dialysis is in her future. She's 26 and has struggled with kidney disease for 11 years.
So you were never worked up for a kidney transplant?
Just a note, about internet etiquette - When you write in all capital letters, this looks (and maybe sounds) to many a recipient as if you were shouting. More info here http://www.ehow.com/how_2106033_use-proper-forum-etiquette.html
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You are, of course, correct, yajokha, that there is no cure for CHF; that was a poor choice of words on my part.
To be on dialysis for 2 years and then no longer require it...well, that's quite miraculous. I know you can't explain it, but do your doctors have any explanation whatsoever? They must be mystified!
And yes, if you've been on dialysis for as long as you were, you certainly do have to remain vigilant and keep a close eye on your diet and your lab results. As you have seen, that is not always an easy thing to do, but you seem to understand the importance of maintaining a renally healthy lifestyle.
Regarding the mass on your kidney, does it cause you any overt problems? Are your doctors thinking of surgically removing it, or do they think it is best to leave well enough alone?
My apologies for all of the questions; it's a bad habit of mine. LOL! I'm eager to hear everyone's stories.
Now that you are off dialysis, do you take any of the usual meds for pre-dialysis patients like anti-hypertensives or meds to combat high lipid levels?
I'm looking forward to your replies. Thanks for taking the time to join IHD!
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i have just posted in the last few hours, replied to your intro,as i stated then i hope your new found freedom per se last for years to come.
if you decide to leave us, i wish you well,with whatever the future holds for you. :thumbup;
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Hello, yajokha75,
I did read your introduction and I was a little puzzled by your recovery
and I have been thinking about it...
You said you were on Dialysis but now you are not on Dialysis anymore and you are well.
I did not understand because I was told by a Professor in 1971
that our kidneys stop trying “to get back on their feet” and “get too lazy to try”,
once a patient has been put on Dialysis, because Dialysis takes over the work of the kidneys...
This Professor explained to me that doctors who looked after me whilst I was in a coma in 1971
when my kidneys first failed, tried hard for me to avoid any Dialysis because of that.
It was a bit of a gamble and I was very lucky when my kidneys started functioning again.
...You have told us that your kidneys function again now without any Dialysis.
Could you please tell us how that was done and what level of kidney function do you have now?
And what medication do you take? And also, what reason do the doctors give for this miraculous recovery?
Sorry to ask all these questions but your post naturally generates this sort of response
and it would be interesting if you could give us some idea.
Thanks for your reply and kind regards and a Happy New Year
and good luck in 2012 from Kristina.
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I love you guys. I have to be "nice" because I'm a moderator. You said what I wanted to say. GEEZ you just joined and it is the holiday season give people a chance.
NO YOUR KIDNEYS DIDN'T COME BACK BECAUSE YOU ONLY YOU CHOSE A HEALTHY LIFESTYLE! Lots of us do what we are told and pray to our GOD and guess waht? We are still on dialysis.
Damn you piss me off. :Kit n Stik;
You judge Galvo, Cariad, and Desert Dancer? You don't even know them. You have not read their Intro and welcomed them either. You haven't welcomed ANYONE.
I wanna talk about me, I wanna talk about my...........
So, either stay and be nice or leave. Whatever!
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WOW!!!
Sorry you feel like you were ignored here. I joined just recently and have vented and whined and have only received loving support from everyone.
I had no clue that CKD could go away. That's great news. My Neph doctor told me that once the scarring occurs it won't heal and will continue over time to scar more. I was also told by him that I had two to four years before I started dialysis and I'm going on over 6 years now so I've slowed it down greatly thru diet I'm assuming.
So are you saying that the scarring healed itself and you have good filtering now?
Please don't take it so personal about not getting responses during the holidays, Give us a chance to get to know you ok?
River
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Love ya Rerun LOL
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This is an interesting thread to read.
Like others, I have been away from the site for awhile. I was in Singapore - one of the lucky people - like you it seems - who have renewed freedom from dialysis (but NOT from CKD). In my case I have a wonderful transplant, which is just 13 months old now and going well.
I am very pleased to read that you appear to be one of the rare, but not unknown, people to be able to go off D due to recoving kidney function - I certainly do hope that lasts for as long as possible. Nobody in their right mind wants anyone to have to endure dialysis for any period.
Just reading this thread though I feel you do come across as defensive, and agressive to a perceived lack of welcome - if you posted in the last day or so I don't think it's unreasonable that there have been few responses. The fact that it took a few dayd for you to be approved because of the holidays and so on, because our moderators and admins - such as ReRun, Karol etc do have liives, families and other things that take them from the site. For me, as I said, I was flying First Class to Singapore (got to treat my kidney to the best, right?? :rofl;) and was out there living life.
It's your choice, of course, if you want to stay or go, but I also feel calling some senior members like Cariad ignorant about kidney disease when I feel if you had read some of her posts on the forum you'd know she actually knows a heck of a lot more about this stuff than most of us - me included - and has been through much herself (and is a sweet lady to boot!). Certainly attacking other members personally when just joining, and "SHOUTING" no less won't endear you. However we're a forgiving bunch and I am certain you would feel more welcome if you gave things and people a bit more time and a chance.
I have not read your post with the questions you want answered yet, but maybe nobody has answered them because they don't know, or don't have a suitable response, or whatever - if you feel unwelcome because o that then I guess it's difficult to be part of a community in this respect. It's true we don't know you very well, since you just joined, but by the same token chances are you don't know a lot of us either.
I've met a number of the posters on this very thread and I can tell you they are some of the kindest, most understanding and supportive people around - and folks who do so much for this site and community that often goes unnoticed or recognised.
So up to you, but I hope you'll reconsider your choice - however you also need to keep in mind that there are real people behind these keyboards - with feelings, lives, experiences, problems, etc too. We all react differently, and when all we have to go on is the written word it's often wise to temper posts a bit to consider how some may react or feel reading them.
All the best to you, either way.
RichardMEL, Moderator
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I, too, just found this thread. I am usually on the site every day, welcoming new folks and giving encouragement where needed. But yesterday I was on a marathon 15 hour drive from Massachusetts to Tennessee. So I missed your introduction.
I find it sad that in such a short time, you post, judge literally THOUSANDS of others because they did not immediately respond to you, and then conclude by insulting those wonderful folks who, despite dealing with renal failure, have not put you at the center of their lives. That is a sad commentary on where you are mentally. It would appear that even though you don't immediately need support for dealing with renal failure, you DO need emotional support to deal with your negative attitude. :bow;
This forum has been a life-saver for many (including me). I'm sorry that you chose to enter the forum (akin to coming into someone's home) and then fling insults at the family. A bit of patience on your part might have given a better outcome.
We are all humans. As such, we don't naturally respond well to being insulted. Unfortunately, the one who suffers most from that is you. So I'm very sorry for you.
Perhaps a deep breath, an apology and a new start might help smooth the feathers that you have ruffled.
Aleta
PS. I have never found that sarcasm works very well as a communication style when directed at the recipient of the message. It is best to reserve sarcasm for situations where you are ranting about a third party. I wish you the best of luck on your journey and I hope that your hiatus from dialysis lasts a long, long time.
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some of the members you called out Galvo, Cariad, Desert Dancer, Moosemom, etc... have been upstanding, loving, and caring members on this forum. It is very shortsighted that you talk to them like that. As someone pointed out there is a holiday going on and I know I haven't been able to check in as much as I would like...
we should just lock this thread....
-R
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@ Ms Karol yes I was worked up for my transplant on August 26, 2009 and I elected to do the living donor with a donation from my baby sister. I have not had a transplant because here in the state of Georgia a transplant recipient has to raise $10,000.00 to make sure that we are able to buy our post transplant meds. The capital letters are because I was using my cell phone and I haven't really figured it out yet, I apologize if it seems as though I was "shouting".
@ Jadey nope not at all being defensive but feeling some kinda way. It wasn't like I posted then ten minutes later got upset. That didn't happen I checked back hours later and saw that no one responded, and I looked at other posts after mine and that's where the feelings came into play.
@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!
@Ang thank you!
@Rerun who said that because I changed how I ate was the reason why it happened? Geez u are hilarious!!!! Please show me where I said that EATING BETTER made me better. I do remember saying that I follow a renal diet and that I follow proper protocol when it comes to my HEALTH. I thinks that you all are defensive and its not me. and then you made this statement here "You judge Galvo, Cariad, and Desert Dancer? You don't even know them. You have not read their Intro and welcomed them either. You haven't welcomed ANYONE." when clearly I said nothing to these individual personally. Now I ask did they judge me before I said 2 words directly to them? I thought that this was a forum and not a bash someone who is doing better healthwise than the next person. Boy was I wrong. HA HA! They should have not came at me like they did and they would not have been given a negative response. I I I I I I did say that I did not ask for any negativity but y'all spewed it, I received it and I gave it back.
@Riverwhispering No the scar tissue is still there and yes I still have tremendous residual kidney function. Thank you River I really appreciate that. I am sure that when half of these people on this forum have @ one time or another felt angry about their situation. I think that there was a lot of jumping the gun in how each individual responded and I think that some of these people are cliqued up and they respond based on how another friend responds. It is what it is. I'm blessed either way it goes.
@RichardMel Did you see how they responded and the vernacular that was used against me? I couldn't be mad because someone else feels unwelcome. How could I speak on how another person feels, no one knows what is going with that person. These people were mad because of how I felt. It is my feelings and no one else's, so why would they come off on me like that? So I was wrong for responding? I don't think so. They do not know me and I don't know them either but I would not pass judgment and say the things that they said. Maybe I was reaching out because I needed something like this when I was depressed about being sick and feeling like I was gonna die. I may not be on dialysis now but please believe in the back of my mind I think that I may not make it to see next year cause the doctors could be wrong about everything. Again it could a few weeks that I am D free or it could be some years but it will always be a thought in my head as well as others. I think that some of these people need to chillax and don't be so quick to be mean because of someones remission(if you will).
And finally Willowtreewren sweetie not a once did I ask to be at the center of no one that I do not know life. I am the center of my own life and my family's life. They can't help me understand the dynamics of this disease but the people of this forum can or could. My mental status is your opinion how you perceive me is your problem and not mine. Not being sarcastic just stating the facts. LOL I don't have a negative attitude but I refuse to be talked to in such a manner as I was. I guess you didn't read how these people came off on me? Maybe because you are the same way IDK. Maybe it has been a lifesaver for you but I haven't been in this long enough to feel like you do. You said it when you said family...have you ever been the blacksheep of your family or do you know one? Because that is exactly how it made me feel. Maybe if "the Family" asked me why I felt this way then maybe you would not have felt like I had an attitude. Please don't feel sorry for me, because I am not suffering. I reached out to IHD because of my situation maybe its not for me and that's cool. There are many support groups here that I can attend or maybe I can start my own. No apologies no need. Everyone said what they felt like at that time and when it was written/said that was the true intent. So I am good on the apology thing. Thanks for your input
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:sarcasm; THIS WILL BE MY THIRD AND FINAL POST TO THIS SO CALLED FORUM FOR DIALYSIS PATIENTS.
:waiting; :waiting; :waiting; :waiting; :waiting;
Wow, I cannot believe of all people in the universe you chose to attack members like Aleta and Richard. You should probably look up the word vernacular. It does not mean what you think it does. Aleta gave fantastic advice, and I do pity you for being too angry to accept it.
I think that some of these people need to chillax and don't be so quick to be mean because of someones remission(if you will).
Riiiiight.... Nothing whatsoever to do with your attitude, it's because we're just so jealous. Sure.
Actually, there is a cure for CKD, and I've been lucky enough to receive it. I am not in remission, I have been cured.
But why believe what I say, since I'm just so ignorant about these things.
Good luck in finding another forum! You'll be running into most of the same people on the few others that are out there, unless of course you want support from Davita corporate.
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I have only been coming to this Forum consistently for a short period of time, and can't rememer whether I was welcomed or not. Must be because I don't have such a fragile ego as you obviously do. I don't know the people that you have berated any more than you do, but I do know that I like their attitude towards how they cope with their situation and the advice that they offer here. However, I don't like your impatient and judgemental attitude. A tad childish, methinks!
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yajokha75, This is the only thread of yours that I've seen.
To be honest, I generally don't read the Intros, unless a new poster intrigues me, then I'll go back and look. I don't read posts about the American medicare system, Nxstage, or other home hemo, or any dialysis providers in the US, as I have nothing to add to any of those discussions. I also generally don't read the Transplant Stories section, as it depresses me.
Personally, I haven't been feeling that well, and have only been on the site sporadically in the last few days, and I don't even remember if I were here yesterday. I'm sure there are posts to the contrary, I just simply don't remember. *L*
Like I said, I haven't seen any of your other posts, so I don't know what any of your questions are, but sometimes it can be days before anyone replies, especially during the holiday season, when people are visiting friends and family, or traveling. The best I can say is that if someone on the board has an answer to your questions, be patient. They will be answered. That has been my experience in the last 2 years or so that I've been an active member of this forum.
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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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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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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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@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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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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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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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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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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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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@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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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?
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This thread is like a car wreck..... can't stop reading it LOL
OMG what a drama queen
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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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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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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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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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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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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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[ 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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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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@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.
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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.
Sluff/Admin
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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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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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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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I didn't have a ton of "hellos" on my intro but people love me....well I think they do at least!
cariad ----> :cuddle;This thread is like a car wreck..... can't stop reading it LOL
This simultaneously vile and laughable statement is proof positive that you have not done one. damned. thing. to get to know the members here.
she did go to vegas to meet members....that's getting to know someone right?
Oh yaj come off it now....let's have a roaring good time!
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I think this guy is being really childish. The people on this thread are very compassionate and caring.
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Children, children lets move on, it is a new year, lets all try and be a bit more welcoming to our new members. Say we answer one each time we go on site. There sorted.
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Children, children lets move on, it is a new year, lets all try and be a bit more welcoming to our new members. Say we answer one each time we go on site. There sorted.
:2thumbsup; :bow; great idea!