THE "UNWELCOME" I RECEIVED

[yajokha75]

  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!!!! 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.

[Rerun]

Sorry you felt unwelcomed.  But, what I read is you are not on dialysis anymore.     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!    

Rerun, Moderator   

[galvo]

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.

[cariad]

Errr, well done, bye bye, and don't let the door hit you in the bum on your way out.

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.

[Desert Dancer]

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.

[ToddB0130]

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 !

[MooseMom]

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!

[yajokha75]

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!

[okarol]

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.

[yajokha75]

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.

[jadey]

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.

[okarol]

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

[MooseMom]

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!

[Ang]

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.

[kristina]

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.

[Rerun]

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.           

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!

[Riverwhispering]

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

[Riverwhispering]

Love ya Rerun LOL

[RichardMEL]

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??  ) 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

[willowtreewren]

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. 

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.

[rsudock]

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

[yajokha75]

@ 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

[cariad]

THIS WILL BE MY THIRD AND FINAL POST TO THIS SO CALLED FORUM FOR DIALYSIS PATIENTS.

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.

[amanda100wilson]

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!

[Riki]

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.