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gothiclovemonkey
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« on: March 11, 2011, 07:59:34 PM »

I am coming to thoughts that I should just give up ,my only driving force is my son, who i love so much, and want the best for, how can me being sick all the time, in and out of hospitals, be any bit good for him? he deserves the best..
im so sick, and i cant keep anything down, my body shaking like crazy, im scared, and i dont know what to do. i went to the er, they didnt do anything, xrays, and blood work, but it all came back just fine, yet im not fine, what shuld i do?? should i give up already???? Im only 27, i feel like im dying, and it seems there is no end to this battle. im so scared, and nobody have answers...
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boswife
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« Reply #1 on: March 11, 2011, 08:07:31 PM »

I just poped on here and saw this and it makes me so sad.  No, your not ready to give up!! NOT!  I am hoping that someone comes on with good words for you as i am at a loss for them . Your young, your son is very much in need of you.  Someone HAS to find ot whats wrong!!  It breaks my heart to know that your feeling so awful..  oh how i wish my mind would work and find words to sooth you.  I can only say my prayers for some comfort for you at this time, and for blessings of health come your way so you can be here for your son.  Hang in there sweetie,  :grouphug;  with you in the middle.
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
MooseMom
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« Reply #2 on: March 11, 2011, 08:39:02 PM »

Simple answer...no, you should not let yourself die.

If they don't even know what is wrong with you, the least you can do is find THAT answer before you make such a drastic decision.  It's a final solution.  If your labs come back fine, then what you are fighting is depression, and depression is never a good reason to die.

No one may have an answer right now, but that doesn't mean there isn't one.

It must be so very hard for you. :cuddle;  Someone really does need to find a cure for this disease.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
gothiclovemonkey
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« Reply #3 on: March 11, 2011, 08:52:05 PM »

i dont feel like im depressed, or at least, i wasnt until this week...
im so scared... i mean, yes i do battle with depression but im on an antidepressent... can depression make u throw up? make ur body shake?? I dont think that is what it is though, i eally dont...
but what can i do? my dr wont listen to me, and the er just checked my gullbladder and said that was fine so sent me home,
i dont want to give up, i want to get better, but i dont know that will happen at this point... im just so scared. how long will i live if i have no nurishment???
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okarol
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« Reply #4 on: March 11, 2011, 10:14:57 PM »

Awww poor girl, you've so much to deal with, it's just not right. If you were my daughter I would call everyone, beat down some doors, until we got some help. Is there anyone in your family that can help you? Is your dad still helping? It sounds like you may be having an allergic reaction, or overdose or something is just giving you side effects. Even if your labs look ok they might not show something like that.
My dad died when I was 7, he was 28 years old. I still cry when I talk about him. I have little snippets of memories, I wish I had more. I was too young to understand death, I kept thinking he'd come back, I'd see him in my dreams. I only say this because even if you're sick, you're still very important to your son. Find a different doctor. You may have to be hospitalized so they can give you IV nutrients while they sort this out. You need to get help right away.
ASK THE DOCTOR about parathyroid tetany /tet·a·ny/ (-ne) a syndrome of sharp flexion of the wrist and ankle joints (carpopedal spasm), muscle twitching, cramps, and convulsions, sometimes with attacks of stridor; due to hyperexcitability of nerves and muscles caused by decreased extracellular ionized calcium in parathyroid hypofunction, vitamin D deficiency, or alkalosis, or following ingestion of alkaline salts. Surgical removal of the parathyroid tumors (parathyroidectomy) to treat hyperparathyroidism can infrequently result in acute dysfunction of the remaining parathyroid glands, causing acute hypoparathyroidism and sudden, severe hypocalcemia. The sudden, extreme hypocalcemia can cause life-threatening tetany and possibly airway obstruction. In these (infrequent) cases, immediate treatment with intravenous calcium and careful monitoring of heart function and airway status are required.
I am PMing you my phone number and I absolutely insist you call me!
 :cuddle; :cuddle; :cuddle; :cuddle;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
casper2636
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« Reply #5 on: March 12, 2011, 12:11:31 AM »

GLM., I've been there...wanting to just fold and sink down into the despair of mud that I felt.I starved myself (79lbs at 5'8"), no escape! But, that given gift I have, that is life kept me fighting back. Don't know why, as I felt that I had nothing to live for. I have me, a good person, an addition to life, a person who matters. Get your head above the water and breath, just one breath. IT WILL GET BETTER!
 :grouphug;
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billybags
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« Reply #6 on: March 12, 2011, 10:39:05 AM »

Goth, oh Goth, do you really think your son will be better off with out you, could you honestly leave him on his own, he needs you. Life may be sh*t at the moment and I have no doubt that you feel really ill, you have got to keep hassling the doctors, get them to sort you out, it may be some medication you are taking, it could be depression, you must talk to some one. I will be praying for you, please don't think of doing any thing stupid. Look at your son and think I will sort this out for both our sakes.
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monrein
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« Reply #7 on: March 12, 2011, 10:54:56 AM »

I want to echo what Karol said about questioning the parathyroidectomy in case it's responsible for the physical things you're experiencing.  Can you also ask your doctor to refer you to the social worker or someone you can talk to about how you're feeling emotionally? 
Quite often it takes a while to find the answers to the puzzle that we represent when we have this illness but please keep on pestering the medical people with questions.
I'm more than positive that your son does not want you to give up.  Please call your doctor again or go back to the ER if that's the only option.   :cuddle; :cuddle; :cuddle;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
jeannea
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« Reply #8 on: March 12, 2011, 11:03:01 AM »

Don't give up yet. Hang in there and MAKE them find out what is going wrong. You can do it. We'll help you. :grouphug;
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jbeany
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« Reply #9 on: March 12, 2011, 12:31:42 PM »

Sweetie, I lost my mom when I was 27, and that was still too young to be without her.  Your son needs his mom.  PERIOD.

 :grouphug; :grouphug; :grouphug;
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

WishIKnew
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« Reply #10 on: March 12, 2011, 12:35:38 PM »

Hey Goth, how old is your son?  Mine is 13 now and he's been through quite a lot with his old mom (me).  I know what you mean about our son's keeping us going.  Tell me about your son.  What is he into?  What do you love most about him?  What are the things you look forward to doing with him when you are feeling better (and I believe you will feel better!!!!).   

I'm sorry that you are in this painfull and frightening place!  I wish I could make it better.  I hope that someone in your day-to-day will step up and carry you through whatever needs to be done or tested to figure out what is going on for you physically, and SOON!

Keep talking to us!  One day at a time! :flower;

Diane
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Hazmat35
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« Reply #11 on: March 12, 2011, 02:00:02 PM »

HI GOTH!  How old is your son?  What do the two of you do together? 

You must hang in there, it's not just you!  Being sick is not a great way to spend the day, but you have to get to a different doctor and find out what's going on if you are that sick.  Sometimes, doctors just don't care, and you have to find a different one!  I about to change dr.'s because of that reason. 

When I go iin for my "monthly" visit, he would just look at me, write things down in the chart, write me a script for meds if i needed them and leave.  He NEVER, checked my lungs, my heart, asked how Dialysis was doing, NOTHING.  I starting asking him "trick" questions, from visit to visit to see if he was paying attention or following up on things he said.  Just last week, I asked him how my PTH level was on the blood work he sent me out for last month.  Of course, I had a copy of it and he said it was within normal range.  IDIOT - they didn't test my PTH, they tested my TESTOSTERONE level.  Of course he never mentioned the TESTOSTERONE level.  Why did I give his fool my hard earned money for the Co-pay!  FIND A REAL DOCTOR WHO CARES. 

KEEP FIGHTING SWEETIE, we are all with you!
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Brother Passed away - 1990 - Liver Disease
Diagnosed w/ Polycystic Kidney Disease - 1998
Mother passed away - Feb. 1999 - PKD
Sister passed away - Feb. 2006 - PKD
AV Fistula / Upper Left Arm - September 2009
Father passed away - September 2009
In-Center Hemo Dialysis - April 2010
Broken Knee Cap - January 2015
Diagnosed w/ A-Fib October 2017
Surgery to repair Hiatal Hernia 2018
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Hating Dialysis since Day 1 and everyday since then!!!!  :)
gothiclovemonkey
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« Reply #12 on: March 12, 2011, 04:26:29 PM »

I realized that I may have sounded suicidal, which i want to say im not. What i think i meant was that I keep telling the dr, he just says hang in there, do i just deal with this or do i fight the dr??
My son is my driving force I love him so very much. I lost my mother when i was young, i was 13, and she was sick all of my life, I know she tried so hard, and loved me so much, and I now feel like I understand her more because of what im going thru, it saddens me, but I really dont want my son to have to deal with all this.
He is the sweetest boy, and hes awesome, just awesome. I am very blessed. He has had a rough life, with his own medical issues, plus mine, and unfortunately his father isnt in his life regularly... poor kid. And we have an appointment coming up because he had some testing done, and they said it was abnormal... another hurdlle for the poor lil guy.
I feel terrible that I cant play with him as much as id like, but We read, draw, do arts and crafts, and have "tickle fights" and cuddle time, we watch movies, i do try to do as much as i can, but hes a boy, he wants to play ball, and stuff like that, things i dont have engery for right now, and i hate myself for that.
He seems to be very understanding of everything, but i hate being a burden, and i hate that he has to go thru this...
My doctor has sooo many patients i think thats what the problem is..
Thank u all for being here for me, I really appriciate it, you all give me strength
THank you
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"Imagine how important death must be to have a prerequisite such as life" Unknown
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gothiclovemonkey
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« Reply #13 on: March 12, 2011, 04:32:27 PM »

My father and step mother have been really supportive and helpful right now, i am very blessed. They dont really know what to do either, and me and my dad both are a bit submissive lol
Im going to mention that tetany to the doctor, hopefully he will listen
My son is such a sweetheart, he came up gave me kisses and said "Im sorry u dont feel good mommy" I said thank u sweetie ur kisses make me  feel so much better! I love you bunches!
Im so blessed just wish I felt better and had the courage and strength to bitchslap my doctor...err i mean lol figure out whats wrong.
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"Imagine how important death must be to have a prerequisite such as life" Unknown
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boswife
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us and fam easter 2013

« Reply #14 on: March 12, 2011, 04:54:32 PM »

Good to hear from you 'got'..hehe  (btw,,, what does your name mean??  well, if ya dont mind telling that is  ;)  )  Children are so precious arent they..  Im glad your there for yours and hope OH SO MUCH that something good will come to you in the way of figuring out your health issue.  Hope you have a good eve, and wake up feelig even a bit better, and stronger so that by monday, you can go give your dr'S some of that...ah hem,,, you know! that they need to get ya goen...  bless ya
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
chook
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« Reply #15 on: March 12, 2011, 04:59:21 PM »

 :cuddle; Glad you have your son to brighten your days. Being ill, and not knowing why, drags you down so much that it's hard to find bright moments in your day. I can only reinforce what everyone much wiser than me has already said - keep pushing for an answer. I know it's hard, especially when tests are coming back 'ok' but you know your body best, and things are NOT okay. Hang in there.
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Diagnosed PKD 1967, age 8
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"To strive, to seek, to find...and not to yield!"
gothiclovemonkey
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« Reply #16 on: March 12, 2011, 05:41:33 PM »

Gothiclovemonkey is gothic love monkey lol no idea why i picked it... im a strange one, had it since early highschool, i was a bit of a freak, and i love monkeys...
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"Imagine how important death must be to have a prerequisite such as life" Unknown
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boswife
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us and fam easter 2013

« Reply #17 on: March 12, 2011, 06:48:43 PM »

thats so funny gothic... i always call you  got the glove monkey...lol not that thats what it spells out but thats what i say. Now i see you spell it out, i 'think' i figured that out already once before but just forgot and went and called ya what i wanted..lol  Please get well youngen!!  your needed here :-)
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
gothiclovemonkey
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« Reply #18 on: March 12, 2011, 07:48:34 PM »

lol got the glove lol
my old name and nick name is squrl (squirrel)  because im a bit nutty lol my dog named me squirrel :)
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"Imagine how important death must be to have a prerequisite such as life" Unknown
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okarol
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« Reply #19 on: March 12, 2011, 08:43:44 PM »

Hehehe!  :rofl;
I saw it as Gothic Clove Monkey - now I see what it is! I wondered about the clove LOL
 :waving;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
denise
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« Reply #20 on: March 14, 2011, 02:11:55 AM »

Hey buddy I'm 27 too and been on dialysis for 4 yrs ...I know how u feel...always remember it could b worse and ain't no point cryin over spilt milk...its done,nothing we can do to change it...only work on the things we can change for the better...y waste energy on things we have no power over???hope to hear from u...I'm new to the chat and could use a fellow young person to chat with :cheer:
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RightSide
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« Reply #21 on: March 14, 2011, 03:24:50 PM »

im so sick, and i cant keep anything down, my body shaking like crazy, im scared, and i dont know what to do. i went to the er, they didnt do anything, xrays, and blood work, but it all came back just fine, yet im not fine, what shuld i do??
There's your answer.

Your current set of doctors and nurses aren't helping you.  We don't know if you can't be helped.  All we know is that the doctors and nurses who are caring for you right now aren't doing the job.
But there are always others.

As Dr. Bernie Siegel wrote in his book "Love, Medicine, and Miracles": 
"You have a right to sixteen doctors' opinions."

When all seems lost with the treatment you're getting, why don't you pick one of the top 5 hospitals in the United States.  (On the East Coast, that would be Johns Hopkins or maybe Massachusetts General.)  Travel there, and get a second ( or third or fourth) opinion from them.  At your own expense if your insurance won't cover it. 

At least then you'll know you tried all possible options.

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carson
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« Reply #22 on: March 26, 2011, 11:07:58 AM »

What you're experiencing sounds much like what I was experiencing when I had a line infection a while ago. I was in ER, then admitted for 6 days in isolation. The nephs didn't know what was wrong, the Infectious Diseases docs didn't know what was wrong. It was horrible but it passed and I had to beg to go home. They did NOTHING but take blood whilst in hospital.
The thing that keeps me going after 14 yrs on D are my pets. I have to be there for them. If I'm not, what happens? Hubby won't want to take care of them. He doesn't especially care for cats, my dog would be too much trouble, and the horse...forgetaboutit! They'd all be sent to a shelter and killed. I LIVE for those pets.
Now, if I had a son (which I always wanted but couldn't have) I can't imagine wanting to die.
I hope you're feeling better and looking forward to seeing your son's life flourish. You don't know what the future holds but they're growing WORKING organs now. I'm pretty optimistic!
Please take care of yourself.
Lisa
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2009 infection treated with Vancomycin and had permacath replaced
2009 septic infection that wouldn't go away
2007 began Nocturnal Home Hemo with Permacath
1997 began Peritoneal Dialysis
1982 had cadaver transplant
1981 diagnosed with GN2 and began Peritoneal Dialysis
Mymothersdaughter
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« Reply #23 on: March 26, 2011, 03:36:00 PM »

Never give up!! My mom has had kidney disease for over 30years, starting when I was five. The first ten years were rough for her, on and off dialysis, and 3 kidney transplants. The third transplant gave her her life back for about 12 years, and she even went back to work as a physiotherapist. I don't think in those first few years, she would have ever dreamed that she would see her grandkids. Don't give up the fight. :boxing; I'll be praying that your doctors will have wisdom and figure this out.  :flower;
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KICKSTART
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« Reply #24 on: March 26, 2011, 03:59:28 PM »

Hey Goth , how are you doing ? Are the dark days seeming a little less dark ?
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
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