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jwaynebo
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« on: October 18, 2008, 09:01:20 PM »

:waving; Hello All,

My name is Jeffrey. I grew up in a small town in central Illinois where I now live.

I have most recently been on dialysis six years.

Prior to that I was born in 1965 with hypo-plastic kidneys (they didn't develop enough to work properly). Because of this, I wasn't expected to live much longer after my diagnosis because nephrology then was still somewhere between its infant and toddler stages.

So much of my infant and childhood years were spent bouncing between hospitals where I was studied and experimented on until finally the dialysis machine was invented and I was given new hope when my family learned that I might benefit someday from a transplant.

So sometime in the Spring or early Summer of 1977 at the young age of 11˝ years old I was put on dialysis.

On January 16, 1980 while sleeping through a film in History class in the Eighth Grade, I received the call for a Kidney Transplant.

This new kidney lasted 22 good years until 2002 when it died peacefully in its sleep, and I was placed back on dialysis where I now reside at the young age of 43 years old.

Two of the nurses from that era in my life are at my new dialysis center today. The male LPN, even when I was a child, liked to play clown and make people laugh. He hasn't stopped doing that after more than 30 years. We get along very well. Whenever I need to sound off, he always has a sympathetic ear. He works for the patients and not for the "Corporation" which in this case is Davita.

When I was a child, each patient was assigned two nurses. Patients could always count on seeing one or both nurses at each treatment. It was very rare for a new face to pop up and say, "I will be your nurse for the day or week."

Today, the only time some patients actually get the benefit of a nurse's help is when they need their heparin pushed, meds dispensed, or they are in some kind of distress.

However, I am extremely grateful for the techs with whom I have had the intense pleasure of benefiting from their own brand of skilled "nursing" care. :2thumbsup; Besides my favorite RN and LPN for whom I always thank God, some of the techs at my center have often helped me turn a potentially bad day into a less bad day.

These techs are priceless and I thank God for them too.  :bow;

Of course in the long run, I thank God for everyone who devote their lives to taking care of people who need specialized long-term care.  :clap;

This however doesn't mean I don't have complaints. While I love and applaud the efforts of my caregivers, I do find it difficult to get along sometimes when a member of staff behaves unprofessionally or insensitively toward me or another patient who just needs a little extra care, or at least some respect.

Anyway, I look forward to meeting everyone. I hope I might be able to make a positive contribution to this community. :)
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Peace,

Jeffrey

"I'm pullin' for ya, We're all in this together." - Red Green
jessup
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« Reply #1 on: October 18, 2008, 09:16:51 PM »

 :welcomesign;
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Zach
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"Still crazy after all these years."

« Reply #2 on: October 18, 2008, 09:22:17 PM »

Welcome to the community.
 :beer1;
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
Rerun
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Going through life tied to a chair!

« Reply #3 on: October 18, 2008, 09:40:32 PM »

Jway welcome to IHD.  22 years is a blessing and I'm sure you are grateful for those years.  I had mine 17 years and when it died I thought I wanted to go with it.  But, here I am.  I too miss the good old days when you had the same nurse and tech and they SERVED lunch.

I'm looking forward to your posts!

Rerun~                     :waving;
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cookie2008
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« Reply #4 on: October 18, 2008, 10:36:24 PM »

 :welcomesign;
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Started PD in 11/07
Started Hemo in 7/08
Started NxStage 5/09
G-Ma
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« Reply #5 on: October 18, 2008, 10:40:12 PM »

 :welcomesign;
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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
Joe Paul
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« Reply #6 on: October 19, 2008, 12:19:12 AM »

Welcome Jeffrey, good to have you aboard.
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
monrein
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Might as well smile

« Reply #7 on: October 19, 2008, 04:27:37 AM »

 :welcomesign; I look forward to getting to know you better.  Glad you joined us.
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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
willieandwinnie
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« Reply #8 on: October 19, 2008, 05:03:34 AM »

:welcomesign; Jeffrey. Wow, great introduction. Glad you found us and we hope to hear more of your story.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
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« Reply #9 on: October 19, 2008, 05:22:40 AM »

 :flower;
welcome to our family
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Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

WWW
« Reply #10 on: October 19, 2008, 07:03:55 AM »

Welcome to our community!  That was a great intro - very interesting history.  You really have lots to share with us.  So glad you decided to join us.  One thing we have to offer you is a great international family.  :grouphug;  Please keep posting, sharing your varied experiences with us.
Looking forward to hearing from you.



Bajanne, Moderator
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"



I LOVE  my IHD family! :grouphug;
jwaynebo
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« Reply #11 on: October 19, 2008, 07:19:13 AM »

Thank you to everyone for your warm welcome. I really appreciate your kind words. I look forward to getting to know my new family.  :thx;
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Peace,

Jeffrey

"I'm pullin' for ya, We're all in this together." - Red Green
kellyt
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« Reply #12 on: October 19, 2008, 10:18:26 AM »

 :waving; :waving;
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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
Razman
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« Reply #13 on: October 19, 2008, 01:10:49 PM »

It's great that you joined " the family" .  I am sure that your experience will be able to help others.     :welcomesign;
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Romona
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« Reply #14 on: October 19, 2008, 02:43:39 PM »

 :welcomesign; Nice to meet you.
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TynyWonder
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Calvin

« Reply #15 on: October 19, 2008, 03:18:31 PM »

 :welcomesign;  Jwayne!!!    Your intro was great but it did leave me with a pondering thought..........you said your kidney transplant "died" in its sleep, right?   Well, I have never wondered this before now, but since only 1 kidney is working, right?   How does a person continue to live through that "kidney's death" that same night?    How does a person also not die when that ONE kidney dies?      I hope no one will think I am  :urcrazy; or stupid for asking this question............. :thx;
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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!
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« Reply #16 on: October 19, 2008, 03:56:21 PM »

 :welcomesign; Jeffrey, We are so glad you joined this great site.  You wrote a marvelous introduction.  The founder of this site would have loved it.  Thank you for sharing your journey so far.   I am sorry the kidney failed.  It does give hope to those waiting to learn that you had the transplant for 22 years.  Doesn't make it any easier when you lose it.  I am sure you will have lots to share with us.  Looking forward to reading more of your posts.






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It's not what you gather, but what you scatter that tells what kind of life you have lived.
jwaynebo
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« Reply #17 on: October 19, 2008, 05:52:04 PM »

:welcomesign;  Jwayne!!!    Your intro was great but it did leave me with a pondering thought..........you said your kidney transplant "died" in its sleep, right?   Well, I have never wondered this before now, but since only 1 kidney is working, right?   How does a person continue to live through that "kidney's death" that same night?    How does a person also not die when that ONE kidney dies?      I hope no one will think I am  :urcrazy; or stupid for asking this question............. :thx;

Hello TynyWonder,

My kidneys didn't work to begin with when I was born. I think one of them worked a small bit but not enough to sustain life for long. I wasn't expected to live. I survived without full kidney function until I started dialysis at 11.5 years old.

So my doctors were asking the same questions all along.  ;)

As far as my kidney "dying in its sleep", this my tongue in cheek way of saying that my kidney died. I am sorry if I may have misled anyone by this comment. It just slowed down and quit working.

I went into the hospital with pneumonia at which time it was discovered that my kidney had finally gave up its proper function. Before then I had already been informed that my kidney was slowing down and that I would eventually need to return to dialysis. My transplant doctor at the time put in a new fistula a few months earlier in preparation for my eventual return to the machine. He did this for free as a friend because I had no insurance and no way of paying any medical bills. Since my kidney had not yet failed, I was not eligible for medicare then.

I was put on dialysis while in the hospital which helped clear the flood out of my system and out of my lungs with the help of lung treatments. I could have died, but I didn't.

For much of my life, I have been "the exception to the rule". I don't say this with pride. I say it because for some reason it is true. I am just happy to be here, and I hope that I can help people who might benefit from my experiences when I can share them with them.

Your question was not stupid, and I appreciate your asking it. That is how we learn.

I had a professor once tell me that there are no such things as a stupid questions, . . . just obnoxious ones. This professor was also good at giving obnoxious answers. ;D

Anyway, I hope I answered your question sufficiently. :)
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Peace,

Jeffrey

"I'm pullin' for ya, We're all in this together." - Red Green
pelagia
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« Reply #18 on: October 19, 2008, 06:02:29 PM »

Hi jwaynebo - I think it's great that you have been the exception to the rule.  That helps them figure out what the rules are so that more folks can break them.  Welcome to IHD!
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
TynyWonder
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Calvin

« Reply #19 on: October 19, 2008, 06:19:11 PM »

Jwayne,

Yeah, you did GREAT in answering my question!    Thanks so much for the explanation!
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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!
jwaynebo
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« Reply #20 on: October 19, 2008, 06:27:43 PM »

Jwayne,

Yeah, you did GREAT in answering my question!    Thanks so much for the explanation!

You're Welcome :beer1;
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Peace,

Jeffrey

"I'm pullin' for ya, We're all in this together." - Red Green
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« Reply #21 on: October 20, 2008, 07:33:35 PM »

Great intro jwaynebo and welcome to ihatedialysis.com,

An entire lifetime of dealing with ESRD has got to be a tough road to ride. Others here have done it as well and for anyone who has had to do this ,I have a great respect for. I have learned that no one knows or appreciates things in life more than someone with a life threatening  condition. I hope to learn from your experiences. Feel free to post as often as you want and share those experiences with your new family at IHD.

Sluff/Admin
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jwaynebo
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« Reply #22 on: October 20, 2008, 08:47:10 PM »

Great intro jwaynebo and welcome to ihatedialysis.com,

An entire lifetime of dealing with ESRD has got to be a tough road to ride. Others here have done it as well and for anyone who has had to do this ,I have a great respect for. I have learned that no one knows or appreciates things in life more than someone with a life threatening  condition. I hope to learn from your experiences. Feel free to post as often as you want and share those experiences with your new family at IHD.

Sluff/Admin

Thank you Sluff for your kind words  :thx;

I have spent a lot of time lately just surfing around the different discussions and find a great wealth of experiences. I am not sure where I should go from here.

Because my transplant lasted so long, I felt like I was new to kidney failure all over again. Even though its been six years now, I sometimes feel like I'm not quite used to it yet. I don't think anybody really does get used to it.

We just learn to settle in with a little help from our friends. That is why I am glad I found this site.  :yahoo;
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Peace,

Jeffrey

"I'm pullin' for ya, We're all in this together." - Red Green
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