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Author Topic: Newbie from Seattle  (Read 6441 times)
Mellow
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« on: December 17, 2008, 05:46:32 PM »

Hello. Happy to have found this website. Have already received valuable information. Three months ago I was in excellent health. Now I have acute kidney failure caused by my immune system attacking my organs as well as diabetes.

I go in for fistula out-patient surgery tomorrow. Although I am going to stay off dialysis as long as possible I want it there just in case.

At first I was devastated emotionally, physically and mentally. But now I feel normal. Also, considering the cause of the kidney failure I am lucky to be alive. My attitude may change once I have to go on dialysis or I don't feel so good. It is just a wait and see situation.

My children are grown, I am retired. I do Yoga, meditate, and play Pickleball.  Hope to get out more socially and do some community work in the future. Usually I enjoy traveling but that is on hold right now because of health issues.

I look forward to reading your posts and comments.
Mellow
 :flower;



EDITED - Photo resized - Bajanne, Moderator
« Last Edit: December 17, 2008, 06:40:38 PM by bajanne2000 » Logged
nursewratchet
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"Either do it, or don't do it, don't try"

« Reply #1 on: December 17, 2008, 06:27:51 PM »

You'll do fine.  Glad to hear you are getting the fistula, it is the best possible option for dialysis.  Lots of info, and caring here.   :flower;
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RN, Staff Nurse 1996-2002
Vicki
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« Reply #2 on: December 17, 2008, 06:43:11 PM »

Welcome to our community, Mellow!  You have found this site at a great time, before you start dialysis.  that is when i found it and it was an important means of preparing myself.   there is lots of information here, but not only that - there is support and even some fun.  so please read and read and read, and post and post and post.  Let us know how you are doing.  You are family now  :grouphug;



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;
G-Ma
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« Reply #3 on: December 17, 2008, 06:51:53 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
Zach
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"Still crazy after all these years."

« Reply #4 on: December 17, 2008, 07:12:56 PM »

Welcome to our 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."
kellyt
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« Reply #5 on: December 17, 2008, 07:37:59 PM »

:waving;  Mellow!   You look wonderful and healthy!  Good luck with your surgery tomorrow.  Will it be in your wrist?  Which arm?

I had no problems with my fistula surgeries, other than my first fistula done on Sept 27, 2007 in my left wrist didn't work.  I had to go back for a 2nd fistula in my upper left arm on Oct 31, 2007.  I was fortunate enough to not have to use it, as I transplanted on Nov. 5th this year.  My fistula, which was running strong, stopped working the morning after transplant - just barely over 1 year old.  It's always better to have it and not need it.  Scars tell a story - usually very interesting stories.

Welcome to IHD.  I look forward to hearing more from you.  Let us know how your fistula surgery goes as soon as you can.  Take a pillow with you for the ride home.  It's good to have something soft to prop your arm on on your bumpy ride home.       :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
pelagia
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« Reply #6 on: December 17, 2008, 08:07:45 PM »

 :welcomesign; Mellow.  What the heck is Pickleball?
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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
cookie2008
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« Reply #7 on: December 17, 2008, 08:17:49 PM »

 :welcomesign;
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Started PD in 11/07
Started Hemo in 7/08
Started NxStage 5/09
monrein
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Might as well smile

« Reply #8 on: December 17, 2008, 08:37:04 PM »

 :welcomesign;  Nice intro, and nice to meet you.  I too want/need to know what pickleball is.  The visuals I'm having are weird.
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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
Joe Paul
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« Reply #9 on: December 17, 2008, 11:06:10 PM »

Welcome Mellow, good to have you aboard.
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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
boxman55
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« Reply #10 on: December 18, 2008, 09:06:14 AM »

Hi Mellow welcome to IHD. what is picklebal? glad you signed up. Good luck with your surgery and come back to let us know how you are doing and how it went.

Boxman,Moderator
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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
Wallyz
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« Reply #11 on: December 18, 2008, 09:35:18 AM »

Hi Mellow.

Always good to meet another Seattleatarian. ;D

Pickleball is a Seattle thing.  It started here, but has spread through the country.

USA Pickleball Association:

http://www.usapa.org/
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paul.karen
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« Reply #12 on: December 18, 2008, 09:54:43 AM »

 :waving; Mello

This is a great site to find before beggining dialysis or even after being on it for awhile.
Welcome aboard :clap;

I lived in Bremerton for many years which is right across the water from Seattle.  So many good memories of Washington.  Cant wait to retire so i can move back there and buy some land.
P&K
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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
RichardMEL
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« Reply #13 on: December 18, 2008, 06:04:11 PM »

Welcome Mellow! I love Seattle! Have been there a number of times. You really remind me of my mother actually. I wish you the best in holding off Dialysis and hope the fistula surgery goes OK!

 :welcomesign;
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
jessup
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« Reply #14 on: December 18, 2008, 06:20:31 PM »

G'day and  :welcomesign;
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KarenInWA
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« Reply #15 on: December 18, 2008, 06:31:07 PM »

Hello from snowy Bothell!  How are you doing with all this snow, Mellow?  Welcome to the IHD board!!!  I am CKD level 3/4 or somewhere around there.  Right now I am safe at home with the heat and the oven on (cooking, of course!).  Be careful walking outside, I slipped and fell today, but hey, at least it was funny!  ;D
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
Rivy
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« Reply #16 on: December 19, 2008, 06:16:25 AM »

 :welcomesign; Mellow,
It's always a good thing to be prepared and getting that Fistula as long as possible.  Make sure you eat the right foods to prevent the dialysis as long as possible.  I had my fistula done before I went on dialysis for 4 months, but couldn't take the complications, but it helped to do research and a lot of it before I when in.  It was still hard to believe and I'm still thinking that my kidneys will work some day...Good site here and I've learned so much.   I love Settle and will be going up there again in March.   

 :waving; Rivy





EDITED:  Corrected icon errors - Bajanne, Moderator
« Last Edit: December 27, 2008, 01:32:53 PM by bajanne2000 » Logged
pelagia
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« Reply #17 on: December 19, 2008, 04:13:32 PM »

this link will take you right to the answer for the question "What is pickleball?" http://usapa.org/whatis_pball/index.php
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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
Mellow
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« Reply #18 on: December 26, 2008, 02:43:09 PM »

Thank you for all the responses. First, I don't look this good. This pic was taken  before on kidney failure while on vacation in Arizona. Right now I look like hell. I have aged considerably in the past few months and have a fat moon face due the steroids I have to take. But I am alive  and feel great. Which is good cause a couple of months ago it was touch and go.

Looks like the surgery went fine. No restrictions following the surgery. Able to use my fingers and arm.  Some swelling and discomfort but no real pain. The fistula Is in my left wrist. Bandages come off Wednesday.

Pickleball is a lot like tennis or badminton. On a much smaller court than tennis. Played with a paddle instead of a racquet and a whiffle ball instead of a tennis ball. I play with the seniors 50+ at Bitterlake and Meadowbrook in Seattle. Come join us. This time of year a lot of the Seattle players spend their winter in Arizona so it is a good time to learn. It is played mostly indoors in the Seattle area and outdoors in Arizona.

Yes, eating right is important. I spent the first weeks researching foods and attending education classes in Diabetes and Renal failure. It was a full time job, learning to manage my diseases. Vasculitis, renal failure, and diabetes. At first I lost a lot of weight and went overboard in restricting my diet. Not healthy. But now I have it down pretty good. A great website is www.usa.gov. It gives detailed nutrition values in "What's in the food you eat".  I use it almost daily.
Again, Thank you for the your responses.
Wishing the best the New Year has to offer.
Mellow
 :flower;
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willieandwinnie
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« Reply #19 on: December 26, 2008, 03:03:41 PM »

 :welcomesign; Mellow. I don't know how I managed to miss your introduction. So glad you joined us and look forward to hearing more from you.  :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 #20 on: December 26, 2008, 09:30:54 PM »

:welcomesign; mellow glad you found us . I live in Everett and work in Edmon's .  Carol
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Bill Peckham
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« Reply #21 on: December 29, 2008, 10:00:01 PM »

Welcome Mellow.  If you have to have CKD, Seattle is a good place to be.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
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« Reply #22 on: December 29, 2008, 10:06:56 PM »

 :welcomesign; Mellow


   glad  to  hear  your  getting  in  early  for  your  fistula 


    before  it  becomes  an  emergency
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live  life  to  the  full  and you won't  die  wondering
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« Reply #23 on: December 29, 2008, 10:38:57 PM »

Hello and  :welcomesign;
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
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My son, Scotland, is my heartbeat.

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« Reply #24 on: January 01, 2009, 02:04:12 PM »

Bill,
I live in Graham and travel to Seattle frequently for the rest of my medical team (Swedish, Seattle Urological, U of WA, Polyclinic & Seattle Cancer Treatment & Wellness Center). I need to find a great nephrologist either in Seattle or between Seattle and Tacoma. I'm brand new (as of yesterday) here and 4 months into dialysis after surgery to remove my last kidney due to bladder cancer. I am used to having a strong medical team for bladder cancer and I am already disheartened by the level of care and I am experiencing in the nephrology/dialysis arena. It took research and persisance to find the best in bladder cancer and to develop strong, positive working relationships. I expect it will be the same for nephrology and dialysis.

I am very proactive and I suppose, at (hopefully) appropriate times, aggressive in my own care. Do you have any referrals for nephrologists who welcome proactive patients and are willing to work & communicate with them about all aspects of their care and decision making?

Thanks, Bill. I look forward to becoming more familiar with your views and website.

Wendy Ramsay
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JUST KEEP GOING.
March 2009: NxStage Pureflow Home Dialysis 5-6 x's week
Sept 2008: In center dialysis
Sept 2008: Left kidney removed (bladder cancer)
April 2006: Right kidney removed (bladder cancer). Chemo for lymph node mets.
April 2004: Bladder removed plus hysterectomy & neobladder made (bladder cancer)
Feb 1994: Original bladder cancer diagnosis & beginning of this journey

www.marykay.com/wramsay
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