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Author Topic: I am not feeling it today...  (Read 5358 times)
Brightsky69
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« on: October 10, 2008, 10:00:06 AM »

One week from today I will be having a PD catheter installed.  :puke; That's what I feel like. I can't believe I am starting dialysis again. This is so unreal..I am not supposed to live like this. Life should be good and it's not right now. I am going to have a tube sticking out of my gut for who knows how long. I worry that my boyfriend will look at the tube and not want to touch me ever again. Right now he is being so incredibly sweet and supportive. But will that last? I told him about the cycler machine I plan on using during the night and he said "Excellent....maybe the machine will drown out our neighbors Harley when he leaves at 5am every morning" I just hope my BF doesn't freak out when he sees the tube for the first time. He has never been through such a heavy medical issue before. He almost passed out when I told him what dialysis was all about.
I got a call last night from my sister in-law. My brother had to call our father to get some information from him. Everyone in the family is pretty much estranged from our dad. It's along story. In conversation my brother told our father that I needed another transplant. All my father said was "Yeah...I heard." My brother explained that I would be getting a PD cath put in place next week. And all my father had to say was "Yeah, well..she's had that before."  :sarcasm; Like he could care less. All I have to say is Who the (blank) needs that loser!

I am scared guys.  :'(
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Transplant June 11, 1991 (1st time) my mom's kidney
Received my 2nd kidney transplant Oct. 19th 2010.
mariannas
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« Reply #1 on: October 10, 2008, 10:30:17 AM »

 :cuddle;

All I can tell you is...I've been there.  I had my PD catheter put in on June 1, 2007.  The months leading up to it were THE worst.  I had the same doubts you do - how will my boyfriend handle it?  How will he stand to look at me?  Well...sometimes I don't think we give these guys enough credit.  My boyfriend has remained at my side and swears that the catheter does not effect him.   If he's lying I certainly can't tell.   I am still pretty self conscious about my tube, but I just have to remind myself that it is my lifeline and those feelings tend to disappear pretty quickly. 
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devon
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« Reply #2 on: October 10, 2008, 10:51:38 AM »

It IS scary!  You're right to be scared, nothing wrong with that.  But, as one of those who's on the other side of that event, it'll be over soon and you'll get through it. 

There are plenty of people here at IHD who've been through the same.  Look to them as you need to for support and encouragement.  We all care very deeply and know what you're going through. 

It's the unknown that's the scariest part I think.  Once you find out what happens, it's a lot less scary. 

From what you say about your boyfriend, it sounds like he's got a good head on his shoulders and he'll be there as you need him.  Love is much deeper than a catheter, I hope!

-Devon
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okarol
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« Reply #3 on: October 10, 2008, 01:14:10 PM »


 :thumbup; It sounds like you've got a good man Brightsky.

I hope you can get through this tough time. Sending you some LOVE!  :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
monrein
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« Reply #4 on: October 10, 2008, 02:48:35 PM »

It's very tough starting up the whole business again but your guy sounds like a good one and I'm glad that you have him with you.  Your attitude towards the catheter is the best and only one to have , as it truly is your lifeline.  I'm sure you guys will figure out a way to see it as a very sexy lifeline at that.

Hugs to you and I hope the being scared lessens soon.   :grouphug; :cuddle; :grouphug;
« Last Edit: October 11, 2008, 12:27:10 PM by monrein » Logged

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
peleroja
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« Reply #5 on: October 11, 2008, 09:00:12 AM »

I understand your feelings.  For two years after my PD surgery I refused to get in the hot tub with others (yeah, we all go in nekkid).  My catheter wasn't in my belly, it was a presternal catheter, about an inch to the right of my left breast.  Well two years later I just said poo on them if they don't like it (they all knew I was on dialysis), got nekkid, and got in the hot tub.  Nobody said diddly squat.  They didn't care about the bells and whistles hanging off me, they were just interested in me, the same old person they had known for years.  After that I never denied myself the opportunity to get in a hot tub or to educate people on PD.
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boxman55
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« Reply #6 on: October 11, 2008, 10:54:20 AM »

You will do just fine. We all will be with you...Boxman
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"Be the change you wished to be"
Started Hemodialysis 8/14/06
Lost lower right leg 5/16/08 due to Diabetes
Sister was denied donation to me for medical reasons 1/2008
TynyWonder
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Calvin

« Reply #7 on: October 11, 2008, 11:28:18 AM »

Brightsky,

I couldn't help getting choked up myself when I read your post.   Sweetie, I know exactly how you feel about being scared.   I have been on dialysis for 10 months now and I STILL get scared!  It does sound like you have a great boyfriend so, try & not worry so much about that part.    :)  Remember we are here for you!    :cuddle;
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Diagnosed with ESRD-November 2006
I have had 2 fistuals-neither one worked
I have had 2 grafts the last one finally "took"
I had 3 different catheters from Nov. 06 - Dec. 08
Got on the transplant list - Halloween Day 2008

You can easily judge the character of others by how they treat those who they think can do nothing for them.    I BELIEVE THIS TO BE SOOOOO TRUE!
petey
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« Reply #8 on: October 11, 2008, 01:49:49 PM »

Brightsky,
I was so touched by your post.  Like you, my husband Marvin had to start dialysis again after three years with a transplant (first time on dialysis was 5 1/2 years -- this time, it's been five years as of October 21).  It was a tough time for both of us when he had to start back, so I know how difficult this is for you and your boyfriend.  My hugs go out to you.

Concerning the appearance of your body...If another woman were to look at Marvin naked, she might see scars all over both his arms, his chest, his abdomen, his thighs (where his surgeon three times has "borrowed" veins and moved them to his fistula/graft-failed sites).  He's had 14 perm caths, 2 Tenckhoffs (for PD), four grafts, a couple of "temp" caths in the groin, two fistulas, one transplant, and one nephrectomy (of transplant).  He's also had about 50 surgeries in the last 14 years.  What do I see when I look at Marvin (either clothed or naked  :2thumbsup; )?  I see a good-looking, wonderful, attractive, sexy, sexy, sexy hunk of a man!!  To me, he's perfect just like he is.  I love the inner man, and the outside shell doesn't matter.  I don't even "see" the obvious scars -- although I do like to put my hand on his arm and feel the "thrill" of his fistula. 

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Brightsky69
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« Reply #9 on: October 12, 2008, 04:22:38 PM »

You guys are the best...I hope you all know that.  :bow;

I do feel better. I am convincing my self that dialysis will make me feel 98% better. Urine output is getting lower and lower.

 Friends and family are being really supportive. My cousin who lives in Michigan called me to say she called the hospital to get info to see about getting tested to be a donor for me. I told her to please do NOT feel obligated to do this for me just because we are family. I told her that I could stay on dialysis for as long as it would take to get a kidney off the list. She said no reason for me to be dialysis if she has a kidney that would match me. Even if she doesn't match I know I can deal with dialysis for however long it takes!  :thumbup;

Thanks for everything! :)
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Transplant June 11, 1991 (1st time) my mom's kidney
Received my 2nd kidney transplant Oct. 19th 2010.
devon
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« Reply #10 on: October 13, 2008, 06:06:09 AM »

Good news about the relative donor, Brightsky!  And, I'm glad things are going better for you.

-Devon
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paul.karen
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« Reply #11 on: October 16, 2008, 12:39:10 PM »

Wow i hadnt even thought of this issue.
My Karen is my lifeline much as my PD tube will soon be.

She is all i have.

So how sturdy are these tubes?
How long are they?

and can i use it to tie karen up now and again.  (in a fun loving way)

I like this forum.
But the people here are the real stars :waving; :bow; :waving;
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
G-Ma
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« Reply #12 on: October 16, 2008, 02:51:13 PM »

not sure about the catheter tube paul but I bet you could save some of the other lines, tie them together....and oops that's getting off track isn't it?  well I think you get the drift huh???   :rofl;   actually, I'm on nxstage and most days I wish the blood lines were about 60 feet long so I could wrap in them to keep warm while I'm dialyzing.  Try anything once....
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
aharris2
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« Reply #13 on: October 18, 2008, 07:12:03 AM »

...and can i use it to tie karen up now and again.  (in a fun loving way)...

I dunno, I think you should check with Karen on that!

:shy;  :guitar:  :bandance;  :cheer: :rofl;  :clap;  You go, guy!
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Life is like a box of chocolates...the more you eat the messier it gets - Epofriend

Epofriend - April 7, 1963 - May 24, 2013
My dear Rolando, I miss you so much!
Rest in peace my dear brother...
Brightsky69
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« Reply #14 on: October 18, 2008, 07:29:47 AM »

Hi All :waving;

It's the day ofter the PD cathaher and I feel like someone stomped on my stomach.  I basically had to sleep sitting up last night. It was just too hard to get up from a prone position. And the breathing tube left my throat a sore mess. I am just now getting my voice back.The PD cath doesn't seem as long as it was the first time.
Let the PD training beging!
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Transplant June 11, 1991 (1st time) my mom's kidney
Received my 2nd kidney transplant Oct. 19th 2010.
aharris2
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Volcan Pacaya, Guatemala

« Reply #15 on: October 18, 2008, 08:30:05 AM »

Feel better Brightsky  :grouphug;
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Life is like a box of chocolates...the more you eat the messier it gets - Epofriend

Epofriend - April 7, 1963 - May 24, 2013
My dear Rolando, I miss you so much!
Rest in peace my dear brother...
TynyWonder
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Calvin

« Reply #16 on: October 18, 2008, 11:34:50 AM »

Brightsky,

Since I am experiencing a ANOTHER cath being put in, I too, can sooooo relate to the feeling of someone stepping on your stomach but my neck feels more like that really.   I can also relate to how your throat feels too but luckily FOR NOW I have not lost my voice.    Lord help us if I do!!!    I will for sure go "nuttier" then!     :yahoo;   So, lets just "hold hands" & hang in there together, okie dokie?    ;)
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Diagnosed with ESRD-November 2006
I have had 2 fistuals-neither one worked
I have had 2 grafts the last one finally "took"
I had 3 different catheters from Nov. 06 - Dec. 08
Got on the transplant list - Halloween Day 2008

You can easily judge the character of others by how they treat those who they think can do nothing for them.    I BELIEVE THIS TO BE SOOOOO TRUE!
Brightsky69
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« Reply #17 on: October 18, 2008, 01:45:49 PM »

TynyWonder....hanging on tight. I know we'll make it!  :cuddle;
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Transplant June 11, 1991 (1st time) my mom's kidney
Received my 2nd kidney transplant Oct. 19th 2010.
okarol
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« Reply #18 on: October 18, 2008, 02:10:33 PM »



Hope the healing is speedy!  :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
paris
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« Reply #19 on: October 18, 2008, 04:24:05 PM »

Brightsky and TynyWonder,  I hope both of you have a quick recovery and things start getting better.  Sending you healing thoughts and good wishes    :grouphug;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Joe Paul
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« Reply #20 on: October 18, 2008, 04:33:44 PM »

I too hope you both heal quickly, good luck  :thumbup;
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"The history of discovery is completed by those who don't follow rules"
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Transplant Jan. 8, 2010
TynyWonder
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Calvin

« Reply #21 on: October 18, 2008, 08:23:41 PM »

Thank you all for the well wishes!    :grouphug; 

Brightsky,

Have you noticed were are the same age?    Kinda neat, huh? ;D
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Diagnosed with ESRD-November 2006
I have had 2 fistuals-neither one worked
I have had 2 grafts the last one finally "took"
I had 3 different catheters from Nov. 06 - Dec. 08
Got on the transplant list - Halloween Day 2008

You can easily judge the character of others by how they treat those who they think can do nothing for them.    I BELIEVE THIS TO BE SOOOOO TRUE!
Brightsky69
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« Reply #22 on: October 20, 2008, 05:51:58 AM »

Hi All,

Feeling less sore today. I called the PD nurse to set up some training. I am so ready to jump in the shower. The sponge bath is not my thing. But I need to get some training on changing my bandages....it's been too long and I forgot all that stuff.


TynyWonder....when is your b-day? Mine is June 1.  :flower;
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Transplant June 11, 1991 (1st time) my mom's kidney
Received my 2nd kidney transplant Oct. 19th 2010.
Ken Shelmerdine
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Life's a bitch and then you go on dialysis!

« Reply #23 on: October 20, 2008, 05:55:51 AM »

Brightsky and Tinywonder. Hope you're soon feeling less sore. I too remember it was the mother of all sore throats. When you said the PD line seems shorter this time, remember you have to have the extension fitted yet. A tip to protect your PD tube is keep it achored so that it is well away from the waistband of your pants because the constant rubbing can wear away at the tube and lead to puncture.
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Ken
Brightsky69
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« Reply #24 on: October 20, 2008, 05:59:41 AM »

Thanks Ken! :waving; 
I don't think I even want to take the bandages off until can see a nurse first.
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Transplant June 11, 1991 (1st time) my mom's kidney
Received my 2nd kidney transplant Oct. 19th 2010.
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