I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Maker on January 16, 2010, 08:43:46 AM
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Yesterday I got the news that my (and many others) prayers have been answered - I am stopping dialysis :bandance;
I know its so unbelievable, but many of you have seen my previous posts about my improving numbers (GFR, BUN, Creatinine) and my Doctors not listening to me. In fact, when I got a horrible infection in my permacath I begged them to pull the cath and not give me another one, and just monitor my labs and see how I do. My Neph and his partner told me straight up that they would NEVER let me get off dialysis no matter what. Keep in mind...one of these Dr.s owns the facility and right now there are quite a few empty chairs >:(
I went for transplant evaluation on Thursday, and the transplant center did labs. I got a call Fri morning from the transplant coordinator and she said there is no way they would transplant a patient with a creatinine of 1.6 and a BUN of 1, and that there is no way any nephrologist could justify keeping me on dialysis. To which I responded, thanks, please call and tell my neph that!!!
Well a few hours later I got a call that yesterday would be my last treatment, and in 2 weeks I will do a 24 hour urine to see how I'm doing. I cried, and cried, and then called everyone who has been praying so much for me.
I knew it was crazy to keep praying for this when it seemed impossible and the Doctors said it would never happen...but it just goes to show, never underestimate God! He does work miracles :2thumbsup;
So...now I have the huge challenge of keeping myself healthy and off dialysis for good. It's a bit scary, but I have faith I can do it. That being said, I asked my dialysis nurses and techs what advice they could give me. The biggest thing they said was drink drink drink. Stay super hydrated all the time! I never retain fluid and pee a lot still.
And by the way, for anyone else out there who may be in a similar situation, most recently I have greatly increased my hydration and my protein. Those are the only things I can think of that I might have changed in my lifestyle that helped with the improvement.
Does anyone else out there have any advice? Maybe some of you who are still pre-dialysis and are managing to keep things under control?
Thanks everyone for your support through all this :cuddle;
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Absolultely no advice but a resounding congratulations. And a lot of quesions about my own treatments.
Why have I never been sick, more than tired from the bloodletting and sick of dialysis? Why are my labs good except low phos, pot and prot (which wouldn't be low at all if you weren't on dialysis? Hummm, sure is a lot easier for my Neph who are primary providers of patients to show up (one of the four) once a week and say hi/bye to 100 or so patients than to have so many scheduled at the office?
Oh your situation if so inspiring and yet thought provoking to a lot of us.
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A big congratulations! And a big Good Luck to staying off dialysis. Keep us posted of your progress, labs, diet, etc. This is very interesting and inspiring! :2thumbsup;
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Absolultely no advice but a resounding congratulations. And a lot of quesions about my own treatments.
Why have I never been sick, more than tired from the bloodletting and sick of dialysis? Why are my labs good except low phos, pot and prot (which wouldn't be low at all if you weren't on dialysis? Hummm, sure is a lot easier for my Neph who are primary providers of patients to show up (one of the four) once a week and say hi/bye to 100 or so patients than to have so many scheduled at the office?
Oh your situation if so inspiring and yet thought provoking to a lot of us.
Hi DW,
I had low phosphorus and potassium too! My protein was low but that's why I have really really increased it and its normal now. I am off my binders now too. Its a big indication that my kidneys are doing what they are supposed to when phosphorus and potassium are actually low (not building up in the bloodstream). I'm curious about your BUN/Creatinine/GFR?
I talked yesterday to a friend at my unit before I left and she said she really doesn't pay attention to her lab numbers. I think my situation is the perfect example of why we all need to be our own advocates and be as educated as we can instead of blindly trusting the Doctors - I know you are with me on this DW ;)
Best of luck to you!!
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Absolutely phenomenal, Lori! I'm so happy for you. :cheer:
A creat of 1.6? I honestly cannot remember the last time mine was that low. I know you probably just want the heck out of that place, but it sounds to me like your nephrologist should be investigated for fraud. I wish I had advice, but all I can think of is to continue to monitor your labs, and switch neprhologists.
Here's hoping that you've seen the last of dialysis. :yahoo;
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I kinda feel like someone ought to be punched. Do you have brothers?
I would want a very detailed explanation from the neph about what he did wrong and what he is doing to make sure it isn't happening to others.
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:cheer:
I hope you never need it again!
And here's for the darn doc - :Kit n Stik;
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This is just such terrific news!!!!!! :yahoo; :yahoo; :yahoo;
When I read how your creatnine was just dropping, I knew someone was
not paying attention (Dr) that Doc need a good :Kit n Stik;
please keep your fingers crossed for my Big Guy, he goes on D once a week
for 3 hrs this week,
Love Anne
Edited - Fixed smiley error: paris, Moderator
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Wow Lori, that is amazing news!!! :bandance; I am so happy for you. :cuddle;
Well just goes to show that anything is possible.
What do you think will happen in the future? If you keep as healthy as you can, do you think you will be able to carry on without needed a transplant?
I hope you are having an amazing weekend celebrating whatever you are doing!!
Sending loads of love x x
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Lori, this is fantistic news! :yahoo; :yahoo; :2thumbsup; :clap; :pray; That dialysis will only be a memory for you, and your kidneys work well as long as you need them. Gotten use to reading your posts here, it will be like loosing a friend. Have a good life.
Rob
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Lori! That's amazing news! Wow! If your creatine is 1.6 there is for sure no need for dialysis right now! I hope you can stay off dialysis as long as possible. Or forever?! Do you think that will happen?
What was your creatine when you started?
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This is truly wonderful news! :cheer: :cheer:
Besides staying hydrated and keeping up the protein intake, I would advise you to avoid artificial sweeteners as they are not good for the kidneys overall.
Otherwise...ENJOY! :bandance; :bandance;
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Such a wonderful post! You are the bright spot in my day :2thumbsup; Now, go live life!! :cuddle;
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:bandance; :clap; :yahoo; I'm so happy for you!!! Take a :Kit n Stik; to those doctors!!
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Fantastic!!!
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Praise God!!!!! Our own little miracle right here on IHD. I am soooo happy for you. Just hope it lasts at least for a few years or so. Your story gives me hope and I hope you have a wonderful and beautiful life. Go and live it.!!!!!!! :grouphug;
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Lori! Words fail me (for once). I am so so happy for you! My dialysis twin getting off the rotten D! You have always been an inspiration. You get out there and live life to the full each and every day. Heavens, I am getting a little teary!!
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:thumbup; :thumbup; :thumbup; Love hearing good news!!
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oh my gosh this is amazing!! I had no clue this was going on. So darn well happy for you Maker hun!!!! You keep it up!!
My advice to you? LIVE IT UP!!! Take this time to enjoy life all over again free of dialysis. Do the things you want to do and have found difficult lately. Get out there and have fun!
WOW!!
:bow; :bow; :bow; :bow; :bow; :bow; :bow; :bow; :bow;
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Lori I just read this thread........ I am so happy for you and surprised...... You are one lucky girl...... make sure you stay in touch and let us know how you are doing....... its the best news ..... I am so excited for you.......
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:bandance; I am so happy for you.
Fixed Smiley - Rerun, Moderator
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Awww, that is such brilliant news!
;D
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Lori,
that is fantastic news.
It's not unheard of for someone to be able to kick dialysis. But it sure isn't common. You're a thousand-to-one shot, congratulations!
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Congrats! That is wonderful for you!!!
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That is simply amazing and wonderful news. :clap; :clap; :clap;
A real happy dance time............ :bandance; :bandance; :bandance;
Congratulations!!!!
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Very cool! I'm so happy for you. This will mean you will have many more years with your own kidneys. Just keep up the good work in your efforts to keep those kidneys going for as long as you can.
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Only advice I'd have for now is to get a new Neph after he told you that you'd never stop dialysis if he was monitoring your labs. He wouldn't instill trust and not listen to the patient.
One thing I'd do if you are still going to get labs done is still cut salt intake (help with bp, don't need high bp on kidneys), and eat healthy. Just not sure about lowering potassium, phosphorus, and red meat though.
So Congrats on stopping dialysis without having a transplant.
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Hey Lori, this is great news!!!! I so happy for you as God always show who's in Control. This is beautiful. I'm so happy someone was paying attention as doctors give unnecessary treatments/texts. I prayer that you will never have to go on dialysis again. Stay healthy :bandance; :2thumbsup; :yahoo; :thumbup;
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:thumbup; All right its nice to hear such good stories that end well. You take care and drop in and let us know how you are doing.
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That's a fantastic reprieve Lori and I'm thrilled for you. Enjoy life and let us know from time to time how things are going for you. :flower; :cheer: :flower;
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Lori! That's amazing news! Wow! If your creatine is 1.6 there is for sure no need for dialysis right now! I hope you can stay off dialysis as long as possible. Or forever?! Do you think that will happen?
What was your creatine when you started?
My creatinine was around 6 when I started Dialysis in Oct. For whatever reason, I have always been very up & down during the 3 years since my diagnosis. Unfortunately no Dr. has ever been able to figure out the cause of my "acute" episodes. I definitely have not had a normal progression of my disease.
Thanks everyone for the well wishes ;D I am planning some trips I would like to take later this year. I will do a 24 hour urine in 2 weeks so please keep me in your prayers that it will show I am doing well even off dialysis. I can tell my Dr. is very skeptical, he said this morning that he is "delaying" dialysis for 2 weeks. I obviously am planning on it being much longer than that :2thumbsup;
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Great news gives me hope :bandance; :flower; :thumbup;
it is true pray can do wonderful things
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Great news. I think dialysis patients are on high protein diets because the machine sucks it out. Non dialysis patients are "usually" on low protein diets as it is hard on the kidneys to process protein. Not sure on this so check it out with a DIFFERENT Nephrologist.
:cuddle;
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I agree with rerun re protein. That's my understanding also.
Yes Lori you need to be off more than two weeks so you can come down under and have a holiday!!! :cuddle;
hehehehe
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I'm on a low protein diet and it is recommended by my nephrologist at Stanford (I am pre-dialysis). You need some protein, though, just figure out what kind your body tolerates and how much your body needs. Also stay well hydrated. Often people with low functioning kidneys take blood pressure meds to keep the kidneys from working so hard. These are just some ideas for you because I want you to do well with the kidneys you have. Good luck.
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just read this post
congrats :2thumbsup;
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Great news. I think dialysis patients are on high protein diets because the machine sucks it out. Non dialysis patients are "usually" on low protein diets as it is hard on the kidneys to process protein. Not sure on this so check it out with a DIFFERENT Nephrologist.
:cuddle;
Thanks Rerun, Sunny, Richard, & everyone for the advice! I am drinking water like its my job. I will be looking into the protein question. I'm thinking about getting back in with my pre-dialysis neph.
And thanks Richard, I would love to visit your part of the world someday!!
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So you're drinking lots of water and not retaining it? Were you always passing lots when on D?
I'm astounded and so pleased for you.!!! :bow; :bow; :bow; :bow; :bow; :bow; :bow;
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Oh, that is so awesome! keep healthy, eat well, stay away from alcohol. Good luck Lori. Congrats :clap; :clap; :clap; :2thumbsup; :yahoo;
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So you're drinking lots of water and not retaining it? Were you always passing lots when on D?
I'm astounded and so pleased for you.!!! :bow; :bow; :bow; :bow; :bow; :bow; :bow;
For the most part, yes. When I started dialysis in OCT I my creatinine was around 6 and so I was retaining fluid. In the first several weeks they took 4-5 kilos off total, and since then I haven't retained at all :2thumbsup;
No problems at all now...in fact trying to stay as hydrated as possible!
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:2thumbsup; fantastic news :2thumbsup;
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You are stopping dialysis!?!?!?! Usually when someone says that on here they got a transplant or can't take it anymore. You have restored my faith in the kidney's ability to heal which none of our neph's seem to believe in. Did they ever figure out what caused your kidney problems in the first place?
Does anyone else in your family have kidney problems? My wife lost her kidneys to a congenital defect, VUR, and no one found it till it was too late. I thought of that after reading you were from Ohio. She is from Ohio too. I know not everyone in Ohio has kidney problems so my logic is silly, but I was trying to figure this out. It sounds amazing! Are you going to get your fistula ligated? We did that once after she had a transplant that worked a few years. We probably would not have done it if we had know the transplant would have given up a few months later.
This is great news!
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Congartulations,i hope you never ever have to walk into a d center again.God is great doctors can be wrong at times,one question is how big were your kidneys since you started???i'm 24 and have been on dialysis since 2008 and my kidneys are really small but i can still pee and use the bathroom.it's when i take those chemical based medications that i do not pee well.thats why i stopped taking them altogether.God blessed you it's clear thats wwhy i'll always have faith .
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congartulations,God blessed you and thats why i'll never lose faith.one question i have is how big your kidneys were when you started??? because i'm 24 been on dialysis since 2008 and my kidneys are small and still pee well but the medicatons are what makes me pee less so i stopped taking them.
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How are you doing Maker?
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Way to be your own advocate and hold your own ground. Faith has a way of give us hope and some solitude.
Wish for your creatine to stay lower. Take care.
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Many congratulations and a great big hug to you. Keep up the good work. I love success stories. :clap;
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What a wonderful gift, enjoy it everyday!
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Maker, what a fantastic outcome congratulations :yahoo; :yahoo; :yahoo; :yahoo;
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Lori:
:bestwishes;
You are a success story. Keep it going (your kidneys lol).
I was diagnosed in 1990 but avoided dialysis for 15 years.
My suggestions:
1. Find a kidney doctor who believes you can avoid dialysis permanently/ for a long time.
2. Get to know your body well.
3. Do research on the net about kidneys.
4. Live a reasonably healthy lifestyle.
5. Hang with other people who believe in healthy living.
6. Beware of snake oil salesmen, "instant curers" and those who say they have all the answers.
7. Love :guitar: your 2 kidneys.
Good Luck
jg
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Regards Maker:
http://ihatedialysis.com/forum/index.php?action=profile;u=46557
Any aware of how this wonderful story turned out?
The journey continues.
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Lori is doing just fine!
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Lori is doing just fine!
I'm happy to hear that. Also, thanks talker for bringing this thread back, because I never would have seen it otherwise. I often wonder if my daughter could improve enough to be off dialysis for several years and not go straight into having a transplant. On the surface, she is a healthy and active 9 year old, and nightly PD doesn't seem to bother her. (Her blood tests do show phosphorus and creatinine consistent with ESRD, though, and that's after being careful about her diet and meds).
Anyway, it is good to know that people sometimes move off dialysis. Hoping Lori has many years of good kidney function ahead.
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I have just seen this thread as well and am amazed. I wonder how Maker is doing now after all this time. It would be lovely to hear from her.
Paul, I believe there can be certain instances of kidney function recovering from what they term, "acute kidney injury", that requires short term dialysis treatment. I'm not sure what sort of timeframes are involved in recovery time from an AKI. But some people can move off dialysis indefinitely if their kidney function returns. The best stories I've heard on kidney forums have been people recovering from AKIs as a matter of fact.
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Lori is doing just fine!
I'm happy to hear that. Also, thanks talker for bringing this thread back, because I never would have seen it otherwise. I often wonder if my daughter could improve enough to be off dialysis for several years and not go straight into having a transplant. On the surface, she is a healthy and active 9 year old, and nightly PD doesn't seem to bother her. (Her blood tests do show phosphorus and creatinine consistent with ESRD, though, and that's after being careful about her diet and meds).
Anyway, it is good to know that people sometimes move off dialysis. Hoping Lori has many years of good kidney function ahead.
Thank you 'galvo' and you are welcome 'PaulBC'.
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Lori is doing just fine!
Hello galvo, great to "see" you again !
And many thanks for the information about Lori.
I hope you are doing alright yourself and I send you my kind regards
and my best wishes, Kristina. :grouphug;
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Lori! That's amazing news! Wow! If your creatine is 1.6 there is for sure no need for dialysis right now! I hope you can stay off dialysis as long as possible. Or forever?! Do you think that will happen?
What was your creatine when you started?
My creatinine was around 6 when I started Dialysis in Oct. For whatever reason, I have always been very up & down during the 3 years since my diagnosis. Unfortunately no Dr. has ever been able to figure out the cause of my "acute" episodes. I definitely have not had a normal progression of my disease.
Thanks everyone for the well wishes ;D I am planning some trips I would like to take later this year. I will do a 24 hour urine in 2 weeks so please keep me in your prayers that it will show I am doing well even off dialysis. I can tell my Dr. is very skeptical, he said this morning that he is "delaying" dialysis for 2 weeks. I obviously am planning on it being much longer than that :2thumbsup;
Good luck and all the best from Kristina. :grouphug;
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Lori is doing just fine!
I'm happy to hear that. Also, thanks talker for bringing this thread back, because I never would have seen it otherwise. I often wonder if my daughter could improve enough to be off dialysis for several years and not go straight into having a transplant. On the surface, she is a healthy and active 9 year old, and nightly PD doesn't seem to bother her. (Her blood tests do show phosphorus and creatinine consistent with ESRD, though, and that's after being careful about her diet and meds).
Anyway, it is good to know that people sometimes move off dialysis. Hoping Lori has many years of good kidney function ahead.
Thank you 'galvo' and you are welcome 'PaulBC'.
While my reviving old topics has been problematic , never was there intent to cause hurt to any poster.
When I go through and read topics like this one, I'm pleased that the poster ( in this case, 'Maker') achieved what many dialysis users , whether silently or out loud, would also like to achieve, 'getting off dialysis'.
Also there are those that did read the old revived post and found some joy in the reading of it. I like to believe that if any one person can achieve a "thing' , that it highly likely that another can also 'achieve it'.
Regardless of how viewed, 'day dreaming, or fantasizing' , there is a 'belief' system at work within us that either 'works for us, or works against us. I much prefer the ''works for us'.
Whether I kick the bucket due to my maturity factor (LOL) , or 'get off dialysis first, is irrelevant, to me what counts is making the effort to achieve that event.
That member 'Maker' is still enjoying the fruits of her labor, is upper most in my thoughts and prayers.
(modified to add more comment )
Just found this thread that reflects what I had mentioned about 'desire to get off dialysis:
http://ihatedialysis.com/forum/index.php?topic=4890.msg70152#msg70152
http://ihatedialysis.com/forum/index.php?topic=25848.msg416266#msg416266
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Why were you on dialysis to begin with w/a creatinine of 1.6?? Your creatinine must be at least 5 before you go on dialysis!