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Author Topic: With love and gratitude  (Read 23945 times)
paris
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« Reply #50 on: September 17, 2010, 07:12:08 AM »

Darth, I have told everyone about the shamrock!   I think you are my own personal good luck charm!!    :2thumbsup;     

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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Darthvadar
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« Reply #51 on: September 17, 2010, 09:59:49 AM »

Hee Hee!!!!!..... Delighted to be able to oblige!!!....

Love....

Darth.....
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
RichardMEL
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« Reply #52 on: September 17, 2010, 05:29:56 PM »

Will anyone volunteer to be my good luck charm? hello? anyone?

I can hear the sound of crickets......
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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!
Bill Peckham
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« Reply #53 on: September 17, 2010, 07:05:58 PM »

:2thumbsup; I love that story! Long live Sean Michael!! :)


I agree - long live Sean Michael!!
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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
Marina
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God Bless my donor family!! :)

« Reply #54 on: September 17, 2010, 07:45:18 PM »

Will anyone volunteer to be my good luck charm? hello? anyone?



  :waving;   ME    :waving;    ME   :waving;   ME   :waving; ME ME  ME  ME ME  ....................             :waving;
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"Anything is possible, if  you  BELIEVE....."  ~~~Joel  Osteen

"Yesterday is history, Tomorrow is a mystery, Today is a gift..... That is why it is called the present"

*************************************************
 Nov 1979 ~ Diabetes 
Apr. 2004- Nov 2010 ~ CAPD
Nov 9, 2010 ~  Received the  THE  GIFT OF LIFE at 
California Pacific  Medical  center  (CPMC)  in San  Francisco,  CA
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #55 on: September 17, 2010, 10:18:09 PM »


 :waving; Hi Paris,
Please add your donor to our Honor Roll: http://ihatedialysis.com/forum/index.php?topic=18641.0
 :yahoo;
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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
galvo
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« Reply #56 on: September 18, 2010, 01:14:10 AM »

It's not cricket season just yet, Richard.
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Galvo
RichardMEL
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« Reply #57 on: September 18, 2010, 02:32:23 AM »

It's not cricket season just yet, Richard.

lol what's that got to do with it?!! Given the result last night I wish I could hibernate through the next six months!!!

thank you, Marina!!! :)
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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!
lola
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I can fly!!!

« Reply #58 on: September 18, 2010, 05:50:59 AM »

Will anyone volunteer to be my good luck charm? hello? anyone?

I can hear the sound of crickets......
MEEEEEEEEEEEEEEEEEEEEEEEEE :-*
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lola
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I can fly!!!

« Reply #59 on: September 18, 2010, 05:54:01 AM »

I hope you know how much HOPE you have given to many of us out there in pra HELL land. xoxoxoxox
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paris
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« Reply #60 on: September 19, 2010, 06:51:33 PM »

I hope you know how much HOPE you have given to many of us out there in pra HELL land. xoxoxoxox

That is what Barry and I said when we were waiting that day.  We thought there was no chance that day, but at least it put hope back in our vocabulary.    I have a sign in my garden  "HOPE".  Around June, I started to give up on hope.  I was going through my 5th year of evaluations, and finally asked what the cut off age was; when would I age out.  She told me we would talk when I was 80!   So, if I do nothing else in my life, I pray that my kidney can give people hope -- I never believed this could happen.  The team didn't think it would happen.  But it did, and I need to share the hope I found with everyone waiting.    It is really time for Otto's hope to come true.   :cuddle;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #61 on: September 19, 2010, 07:21:39 PM »

 :cheer: You have such a great outlook paris!

I hope you don't mind me sharing Otto's page here so other's can subscribe to updates and share it on their facebook pages too!  http://www.facebook.com/home.php?#!/pages/Help-find-Ottos-HERO/111480325536939
 :thx;
« Last Edit: September 19, 2010, 07:24:10 PM by okarol » Logged


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 #62 on: September 21, 2010, 11:10:02 AM »

Okarol, I am glad you posted Otto's page here.   Remember sitting in Vegas knowing Otto was having surgery?  We were all so excited for him and then things went wrong and we all hurt for him and Lola so much.   

I have been tired the past couple of days.  Thank you, Kelly, for reminding me that I should be tired!  I need to always remember that I don't have anything else to do but take care of me and "Sean" right now.    I got my first 3 month order of prescriptions (most of them).  Thank goodness for insurance!  And for life saving drugs!  And for no prednisone.   I am having tremors now, which was really funny last night when I was helping Beth cut out fabric.  She finally took the scissors away from me "before you hurt yourself!!!".      Clinic is on Thursday.    :thumbup;   And when I have labs (M-W-F), I have the same tech.  I like that because he knows my arms now and is good with the needle.  Funny what makes us happy now.   lol

Thanks to all for your wonder support. I don't know how people go through this alone.  It feels good to have such a great community to lean on.   :grouphug;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
RichardMEL
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« Reply #63 on: September 21, 2010, 06:47:32 PM »

Paris, can you tell us a bit about how you've been handling things like the hygene aspects - like do you use a lot of hand sanitiser and stuff like that? What about going out in public, eating etc? What guidelines are you using there?
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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!
natnnnat
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« Reply #64 on: September 21, 2010, 06:57:58 PM »

Omigod holy cow!  Paris has a new kidney!  What excellent news!  Omigod!!!
 :thumbup; :thumbup; :thumbup;
Take it easy now dear girl and rest yourself...
w00t!!!!
 :clap; :clap; :2thumbsup; :2thumbsup; :cuddle; :bandance; :bandance; :cheer: :cheer:
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
paris
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« Reply #65 on: September 26, 2010, 06:05:18 PM »

Natnnnat----Thank you!   I am still flying high!!

Richard,  Good question!   My daughter, Melissa, hired a team to come in and scrub everything down-- counters, floors, bathrooms, etc.  Then my daughter-in-law (the nurse) bought a case of paper towels, hand sanitizers for every room and hand washing instructions that she posted on the front door, in the bathrooms and kitchen.  You should hear the grandkids sing "happy birthday" two times while they wash their hands!!     I was told not to eat out for a while.  No salad bars, no buffets, etc.  No fast food, because you don't know how long it has been sitting there.   If you have to eat out, order a steak (not rare), a baked potato, but ask them not to open it.    Wash all fresh produce, even the ready to eat bagged salads.  Only eat fruit that can be peeled.  (can you peel strawberries or blackberries??).     I were a mask at all labs and clinic visits. Also to the store - I've only gone twice!   We put anti-bacterial wipes in both cars.   I just think it is good to be careful and respect this gift.  Why take any unnecessary chances?   It helps that I have always been a rule-follower (surprise!) LOL -- so if they tell me to do something, I will until they tell me different.       Thanks for asking, Richard!    :cuddle;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
paris
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« Reply #66 on: September 26, 2010, 06:18:49 PM »

Forgot to say that Thursday was clinic.  Creatinine was 2.4.  They keep telling not to worry, it could just take awhile.   Potassium was down.  Tremors are still going strong, but it helps to know that they should settle down after awhile.  I am healing so well, that part of the skin has grown over some of staples.  They took out about 30 - about 3 inches of the 8 inches.  My surgeon is known for the amount of staples he uses!   Labs are now down to twice a week.  So, I feel like I am making progress.    :2thumbsup;   

Our newest grandchild will arrive Tuesday.  #10!   A baby girl.  It has been the month of great events for us.

On Friday, 14 of the orginal 16, will head for the week vacation in Disney World. The main event is the Mickey's not so scary Halloween Party and everyone is in costume.  Barry and I were going as original Mouseketeers.  Fortunately, we booked everything through Disney and they refunded everything.   Beth and Hatem are Jasmine and Alladin.   The kids and grandkids are sad to go without us, but they all think I have a great reason for not going!   I told them they have to email pictures everyday.   My son, Todd, says there is next year and everyone else wants to go again, too.     And "Sean" will be in full form by then!   :thumbup;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
kellyt
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« Reply #67 on: September 26, 2010, 06:22:44 PM »

Did you get my phone message the other day, Paris?  I would have loved to talk to you.  Tell me when a good time to call you would be. 
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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
Chris
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« Reply #68 on: September 26, 2010, 10:15:02 PM »

Boy am I lay to this party!
Just saw this post on new topics that wasn't there before.
 
Glad things are improving Paris.
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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?
RichardMEL
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« Reply #69 on: September 27, 2010, 01:32:40 AM »

What Chris, AB isn't keeping you up to date via texts? What shall we do with that girl?!?!  :rofl;

Paris, wow that's a lot of precautions you're taking - NOT that I blame you. I guess I'm selfishly asking because hopefully someday that will be me. I know my own care team will give me lots of instructions, but I think I want to try and prepare myself emotionally/mentally as much as anything. I've already done a few small preparations, like got a box of disposable gloves to use when dealing with the cat's litter tray(of course for the first X months I know I can get my sister to do that job!!) and I have some of the hand sanitiser that doesn't require water. Obviously I will need so much more.

Living on my own I do wonder about the deep cleaning and all that (and about how I can deal with my kitty). All things to ponder...

re food sounds like I might have to lean on my sister a lot in that dept (I am terrible in the kitchen... need a good woman to help  :rofl;). I do agree that with a lot of food out you just don't know how long stuff has been out. I have kept it in mind quite a lot when I have been out just watching what they do and stuff. Some places, for example, make burgers fresh, but then zap them in a microwave (?!) but then you have the issue if they stick salad bits - lettuce, tomato, cheese in how long has THAT been sitting in the preparation area (same with subway, which would have to be a big no no). Another place I like to go to that does these awesome chicken schnitzel burgers I noticed they have the schnitzels sitting under heat lamps - again goodness knows how long for - so that place would be out. d'oh! A few of the higher end places make stuff fresh to order, so the meat I wouldn't be too worried about (cooked there and then) but the salad stuff, bzzt.

I guess these are some of the tradeoff's for the wonderful gift.
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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!
okarol
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« Reply #70 on: September 27, 2010, 01:59:42 AM »

For Jenna the food restrictions were especially important in the first 90 days. After that you can eat more normally, although in the case of spoiled or questionable food, it's better to just err on the side of caution.
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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 #71 on: October 01, 2010, 05:37:44 PM »

Okarol's right, it does get better as time goes on.

Richard, I was so glad they said my cat was ok to be around.  I would have had a tough time without her!    You do have to be careful with the litter.    The one thing that was a surprise to me was black pepper.  They said to avoid it because it is a plant and can have spores in it.  After all this time, and I hadn't read anything about that.   And it does seem like each center has different rules.

Numbers update:  Creatinine is 2.2 (best it has been). They told me that my kidney "buddy" is doing the same thing-- slowly waking up and we are pretty much on the same path.     My white count is low, so a change of the cellcept dosage.   Hemoglobin is 10 - I am happy with that, they want it a little higher.   Things are going along great.  Today was a mulitple nap day.  The past two days, I helped Beth sew.   So, two energy days = one day of rest!   
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
okarol
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« Reply #72 on: October 01, 2010, 06:33:53 PM »

 :2thumbsup;
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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
BASSMAN
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« Reply #73 on: October 01, 2010, 06:51:43 PM »

Great news paris!!!!

Glad to hear your kidney is waking up!!!!
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Membranous Glomerulonephritis confirmed by biopsy in  April 1989
currently Stage IV CRF
GFR 18
Creatinine 3.9
AV fistula (radiocephalic) placed September 24, 2009
Began transplant evaluation November 11, 2009
Completed transplant eval and approved for transplant February 10, 2010
Received confirmation letter I am on the UNOS list February 18, 2010
Wife began donor testing March 1, 2010
Received living donor preemptive transplant from spouse July 22, 2010

http://www.caringbridge.org/visit/phillipjohnsen
galvo
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« Reply #74 on: October 01, 2010, 07:36:19 PM »

Sounding good, Paris.
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Galvo
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