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Author Topic: I am Done  (Read 13943 times)
Comeback Kid(ney)
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« Reply #25 on: August 11, 2011, 11:31:26 AM »

I am a PD patient and I understand completely where you are coming from. There isn't a day that doesn't go by that I don't think of quitting and just say the hell with it all. The thing that snaps me back is that I do not want ever end up in the hospital emergency room ever again. There they have a license to kill you. One thing is you do learn a lot about yourself doing this. I am on my 3rd clinic in 3 years and I knew after the first two, I must leave or they are going to finish me off. Just to show you how serious I am about my vigilance, I am suing the 2nd clinic I was at and do whatever it takes to make sure that the nurse that screwed me up NEVER works in another one of these facilities again. Because of her negligence in general, I now have to dialyze at home for 8 hours again after going down to 6 for about 9 months. I have the best advocate working with me and we have a real bulldog attorney who will be aggressively pursuing justice. So, I understand your plight but PLEASE don't give up because the side effects could be devastating to you.NEVER GIVE UP!!!
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jeannea
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« Reply #26 on: August 11, 2011, 06:17:44 PM »

I'm so sorry you've been cursed with this fear. You know it's not rational but there's nothing to do about it. I wish there was a way to put you to sleep without needles so you could get the PD surgery or a new catheter but I don't know it. I personally hate needles and my nurse laughs at me when I whine about my epo shot but I know I'm not as bad off as you are. I wish you had someone to talk to. There must be some low cost counseling services in your area. You shouldn't have to go through this alone.
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needlephobic
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« Reply #27 on: August 11, 2011, 07:49:21 PM »

I'm so sorry you've been cursed with this fear. You know it's not rational but there's nothing to do about it. I wish there was a way to put you to sleep without needles so you could get the PD surgery or a new catheter but I don't know it. I personally hate needles and my nurse laughs at me when I whine about my epo shot but I know I'm not as bad off as you are. I wish you had someone to talk to. There must be some low cost counseling services in your area. You shouldn't have to go through this alone.

I Have searched for over 8 months to find a counselor to help me try and over come this fear. What I found out is nobody is educated about needlephobia. Since learning of my kidney prob and dialysis I have been on my own. Finding my own answers to questions they as in NEH and staff at D wouldn't answer. When I first started in center D I told them of my phobia they just thought I was pulling there leg untill that day that tech waved that needle in my face that got there attention fast and was told if I hit they will press charges. They tried to gang up on me to stick me as in circle me about 8 of them. Former social worker said if she knew about that all hell would have broke loose. Ganging up on a needle phobic is asking for a fight. It was like they wanted me to hit one of them so they could get rid of me. I had no home support they acted like it was nothing to have kidney probs. Now since I am in my own apartment they as in family has not even called me to see how I am doing. When they ask me to be Network 13 PR they as in administrator and neph told me to not tell any new patient about my phobia. They was afraid It might scare a patient so they would not get a fistula. Then they took my PR away because I have not been stuck or used my fistula. There reason was since I have not used mine I couldn't tell others about why we use fistulas. If that is the case why should I listen to the neph or techs nurses they don't have fistulas I don't see them setting in the chairs for 3 to 4 hours getting the life sucked out of them but they can preach about fistulas they don't have because they studied and I don't give me a break. Thanks to this site I know more about dialysis than the staff and that is pretty bad. They hate it when I tell them they are wrong then comes the excuses. As the charge nurse told me she has a license she is smarter than me I need to just set there and let them do there thing like yeah right my body I decide what goes in my body not them. sorry for the rant   
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kellyt
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« Reply #28 on: August 13, 2011, 01:02:28 PM »

What about "button holes"?  I know it would take a while for the holes to set, but after that you should be...better?  I'm still praying for you!!!   :cuddle;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
boswife
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us and fam easter 2013

« Reply #29 on: August 13, 2011, 01:32:15 PM »

Are you getting dialysis?  Has anything improved? 
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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
jeannea
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« Reply #30 on: August 13, 2011, 03:26:58 PM »

My only other idea is laughing gas (nitrous oxide) to put you under so you can get a new permacath or a PD cath but it's hard to find a hospital that uses it. I have heard of some maternity wards that use it.

I'm sorry you have no one to help you. Your clinic has totally dropped the ball. I just feel so sad and angry for you that you're stuck between a rock and a hard place.
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needlephobic
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« Reply #31 on: August 13, 2011, 07:17:15 PM »

What about "button holes"?  I know it would take a while for the holes to set, but after that you should be...better?  I'm still praying for you!!!   :cuddle;
Button holes require needles I just can't do it.
Are you getting dialysis?  Has anything improved? 

Trying to get dialysis but since my chest cath is having some probs mostly with speed. They set the machine at 400 the alarm beeps which means timer stops untill somebody gets over there to reset the machine. T.hey stand over me and complain about my cath like I am not even there. They don't know how to encourage someone just complain and whine about it. I think anybody going into the medical feild should take a 8 month or more class on needle phobia. It has been classified as a mental illness about a year ago. So right now I'm screwed.
My only other idea is laughing gas (nitrous oxide) to put you under so you can get a new permacath or a PD cath but it's hard to find a hospital that uses it. I have heard of some maternity wards that use it.

I'm sorry you have no one to help you. Your clinic has totally dropped the ball. I just feel so sad and angry for you that you're stuck between a rock and a hard place.


Laughing gas might do the trick just getting them to pay for the shipment will be like then sticking me. Not sure if the hospital has it or not. Not really sure if I could do dialysis at the hospital.
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boswife
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us and fam easter 2013

« Reply #32 on: August 13, 2011, 08:03:01 PM »

I think because of their non understanding of REAL phobias is what has me so angered.  They are working with needles and should know ALL the ins and outs of them, including there are true phobias and know something, at least how to treat patients!, about how to handle the situation.  I know i always bring up my own issues, but i have things i cant do.  Not just have a hard time doing but CANT and so i understand.  The only thing i wonder is, if my life depended on it, would that change or would i sadly be in your same position.  Im so sorry, sad, upset, discusted and simpithetic to your trials 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
Xime_from_Chile
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« Reply #33 on: August 14, 2011, 12:57:14 PM »

I'm really sorry about your fear and all the problems you are going through. Have you thought about hypnosis?
Take care,

Xime
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Ximena (He-ma-nah)
03/16/2011 Son Rafael was born with dysplasic kidneys
03/20/2011 ESRD confirmed
03/23/2011 Tenkhoff installed
06/23/2011 Started PD
Sept 2011 Hydrocele and catheter reacommodation
03/22/2012 gastrostomy performed
10/12/2012 Ureteral valves reimplantantion
April 2013 right nephrectomy
08/07/2013 finally, kidney transplant!
needlephobic
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« Reply #34 on: August 14, 2011, 06:55:31 PM »

I think because of their non understanding of REAL phobias is what has me so angered.  They are working with needles and should know ALL the ins and outs of them, including there are true phobias and know something, at least how to treat patients!, about how to handle the situation.  I know i always bring up my own issues, but i have things i cant do.  Not just have a hard time doing but CANT and so i understand.  The only thing i wonder is, if my life depended on it, would that change or would i sadly be in your same position.  Im so sorry, sad, upset, discusted and simpithetic to your trials here. 

As I said before people who go into the medical field should do a 8 week or more study on phobias. As most Needle phobics and including myself at this moment I would rather sick than get stuck with a needle. Harsh words I know.

I'm really sorry about your fear and all the problems you are going through. Have you thought about hypnosis?
Take care,

Xime

Yes thought about it and talked to a Doctor that does it and was told would not work on me I am too strong willed. He said it would not Last long because the phobia will again show its ugly face. He is trying assertive approach don't see how that will help.
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Ang
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« Reply #35 on: August 14, 2011, 08:05:16 PM »

just curious how you managed to have bloods taken before the cath was inserted :waiting;
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live  life  to  the  full  and you won't  die  wondering
needlephobic
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« Reply #36 on: August 14, 2011, 08:49:09 PM »

just curious how you managed to have bloods taken before the cath was inserted :waiting;

They had to get other people to hold me to take blood cause I fight at first could not bring myself to go in to the office for them to take blood put it off untill I got to sick to fight
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YLGuy
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« Reply #37 on: August 14, 2011, 08:57:25 PM »

I am sorry but why can't you use oral sedatives?
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rsudock
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will of the healthy makes up the fate of the sick.

« Reply #38 on: August 14, 2011, 10:10:02 PM »

Needlephobic I am so worried for you...I don't want this to be the end.....I am thinking about you....I wish there was something I could do...

 :pray;

xo,
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
lmunchkin
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"There Is No Place Like Home!"

« Reply #39 on: August 15, 2011, 08:52:48 PM »

It must be pure "Hell" that you are going through!  And this is a fear that will effect your living or dying!  What an aweful delimma you are in Needlephobic!  But something has to be done and Im confident you will find a way!  I have a tremendous fear of drowning!  I do go around water, but not particularly fond of it!  It was years before I got the nerve to go into it.  In May 2010 when the floods happened in Middle Tennessee,  I was trembling.  So thankful it did not reach our home, but lives were lost in that flood, and I count my blessings!

keep us posted!

lmunchkin     :kickstart;
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
YLGuy
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« Reply #40 on: August 15, 2011, 11:09:36 PM »

This really has many of us very worried about you.  You are in my thoughts and prayers.  I truly hope that they find a way for you to keep having treatments.
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needlephobic
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« Reply #41 on: August 16, 2011, 08:23:20 AM »

Well as of today my neph said that there is nothing they could do untill I get another chest cath or let them stick me. I asked for something to knock me out while they stick me They won't they said I need to be awake when they stick me. They won't sign agreement that no charges will be pressed if I fight them. Looks like I am done. They are not going to help me in any way. They just think of themselves not my phobia. Not sure what I am going to do now
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dawn24
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« Reply #42 on: August 16, 2011, 08:48:57 AM »

 :( :( Is there anyway you could be referred to a mental health specialist who could advocate on your behalf?
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jeannea
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« Reply #43 on: August 16, 2011, 09:24:24 AM »

I'm so sorry. It's appalling that they won't help you or give you any real options. They're bad physicians.
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needlephobic
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« Reply #44 on: August 16, 2011, 08:47:48 PM »

:( :( Is there anyway you could be referred to a mental health specialist who could advocate on your behalf?

Don't have anybody to refer me. They won't they don't want want anybody on there butts.

I'm so sorry. It's appalling that they won't help you or give you any real options. They're bad physicians.
No they won't help me. I told the neph at the beginning about my phobia went in one ear out the other.My neph has never listen to me been at this alone and looks like I'll die alone. My neph don't care my family don't care have no home support what so ever just a lone wolf. Word of warning don't get a neph that is is a partner of the owner of the D center. Because he or she will only listen to the head doc and do what he or she wants the hell with the patients they just want the money. Was told when I was network 13 patients rep to hide the fact I am needle phobic didn't want to scare the new patients sorry not going to lie if asked.They took away my pr just because I have not used my fistula. I belive it is what I wrote about my phobia they didn't like and the trust issues I have with my neph it goes with my phobia. It scared them so take away my pr and make my life hell.
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MooseMom
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« Reply #45 on: August 16, 2011, 10:06:52 PM »

Well as of today my neph said that there is nothing they could do untill I get another chest cath or let them stick me. I asked for something to knock me out while they stick me They won't they said I need to be awake when they stick me. They won't sign agreement that no charges will be pressed if I fight them. Looks like I am done. They are not going to help me in any way. They just think of themselves not my phobia. Not sure what I am going to do now

Realistically, they can't sedate you everytime they have to stick you...that would play hell with your body!  And if they can't use the cath at the moment, I'm not sure what other option they have.  What is it ideally you want to have happen?  You haven't given yourself any way out of this.  If your neph and the staff were the most wonderful, empathetic, compassionate people on the face of the earth, how would that change your situation?  All of their "understanding" wouldn't rid you of your phobia, and your cath would still not be working.  So again, what is it that you are expecting them to do that they are not already doing?

(This isn't to say that they haven't been unhelpful and could do a better job.  But I am not sure how their change in attitude would really practically help you.  Am I making any sense?)
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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."
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« Reply #46 on: August 17, 2011, 07:55:39 PM »

Will they sedate you enough that you can have an IV placed and another Catheter placed?  Ask the front office if there is another neph that services your dialysis center that is not part of the neph group that owns the center.  That is what I did and I lucked out with a great neph.  Is there a different dialysis center in your area that has different nephs that you could switch too?
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needlephobic
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« Reply #47 on: August 20, 2011, 07:01:48 PM »

Well the chest cath worked the last 2 treatments woo hoo but another issue has come up. Last Thursday I was told there was a order for a IV drip. I was told they don't know why it was ordered and who ordered it. Glad somebody informed me of this order I didn't need NOT. Know one told me a thing untill they were getting ready to hook it up and I stopped them. Today they tried the same thing geee got to watch these people like a hawk. And they wonder why I have trust issues. Makes me wonder if they inject people with drugs not knowing  who ordered it? Should be a red flag there people. Its called ask and be sure before you give a person drugs. They have done 3 cultures on my cath came back neg. The tech thinks maybe one of the docs gave the order to the wrong patient and didn't double check and didn't put his john handcock on the order. And we got to trust these people with our lives.
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MooseMom
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« Reply #48 on: August 20, 2011, 09:08:29 PM »

You're absolutely right...you have to be so aware of anyone who comes at you with a drug in hand!
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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."
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« Reply #49 on: August 21, 2011, 03:57:50 AM »

Sounds like you are sorting things out. Chest cath seems good.
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