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Author Topic: With love and gratitude  (Read 23931 times)
Sunny
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Sunny

« Reply #75 on: October 02, 2010, 12:51:35 PM »

Paris,I am so happy for you and your new kidney.Make sure you get lots of rest.
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Sunny, 49 year old female
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kristina
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« Reply #76 on: October 03, 2010, 03:09:02 AM »

 
I do hope, things go well for you in the future.
Just imagine, I did not even know you had a transplant!
Best wishes from Kristina  :waving;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
paris
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« Reply #77 on: October 04, 2010, 01:52:24 PM »

Things continue to stay on an even keel.  Clinic is this week and I hope they take the rest of the staples out.   I don't especially like getting up early, but I do like going to clinic so they can assure me that everything is going well.   I think my husband is a little concerned because he thinks I am too tired and not doing enough.  He doesn't say it in those words,  but he mentions how much I am sleeping a lot.  I remind him that I am many years older than I was when this all started and I am not going to go back to where I was then.  I'm older and earned some rest!   I am going to continue to listen to my body and do things when I feel like it and rest or nap when the body says to stop.   How were some of you  doing at 5 weeks post?

Fourteen of the family members are all at Disney World on our wonderful family vacation that we had planned for the past year.  They are having a great time. Sunday was the "Not So Scary Halloween Party"  at the Magic Kingdom  and all their costumes looked great.  They are having a magical time!!    ( I miss them!)
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Bill Peckham
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« Reply #78 on: October 04, 2010, 03:19:39 PM »

Things continue to stay on an even keel.  Clinic is this week and I hope they take the rest of the staples out.   I don't especially like getting up early, but I do like going to clinic so they can assure me that everything is going well.   I think my husband is a little concerned because he thinks I am too tired and not doing enough.  He doesn't say it in those words,  but he mentions how much I am sleeping a lot.  I remind him that I am many years older than I was when this all started and I am not going to go back to where I was then.  I'm older and earned some rest!   I am going to continue to listen to my body and do things when I feel like it and rest or nap when the body says to stop.   How were some of you  doing at 5 weeks post?

Fourteen of the family members are all at Disney World on our wonderful family vacation that we had planned for the past year.  They are having a great time. Sunday was the "Not So Scary Halloween Party"  at the Magic Kingdom  and all their costumes looked great.  They are having a magical time!!    ( I miss them!)

There will be plenty of vacation in the future. (the photos on FB looked like a great party)

It takes a concerted effort to get back to yourself after a period of bed rest. I think I have heard a week for each day in bed so you'll have some work to get back to where you were.
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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
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murphy
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« Reply #79 on: October 04, 2010, 09:47:44 PM »

Paris I was about like you at about 5 weeks  I started baking something every day.  Something I could sit dawn and rest when i needed to.  I gave away so much food,  some to neighbors and I took some to the food pantry, and the hospice house for visitors  I even got out my old bread machine and made lots of different kinds.  It was great therapy for me.  I felt like I was being useful again.
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Beth36
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« Reply #80 on: October 05, 2010, 09:34:17 AM »

Both my mom and my sister needed regular naps post transplant (and sister's donation to mom), so I think you are doing GREAT! You had major surgery and need to give your body time to heal. You need your rest. Your energy will come back soon enough. Just concentrate on you and getting you to feel more like yourself. My mom was so happy to hear you got a transplant. I've told her about your PRA. She said you give all high PRA people hope!  :grouphug; :grouphug; :grouphug;

Beth
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Mom had positive crossmatch transplant at Mayo Clinic on 6/13/08!!
jbeany
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Cattitude

« Reply #81 on: October 05, 2010, 11:46:33 AM »

With a hemoglobin of 10, you would nap anyhow.  Add in transplant surgery, new meds to adjust to, etc....it's going to take a while to get up to speed! 

I'm glad they don't make you get rid of kitties, too.  Although I do sometimes wonder what my neighbors must think I'm doing when I take the used litter to the dumpster - dressed in gloves and a face mask! 

Disney will be even better next year when you have energy to (almost!) keep up with the kiddies!

 :grouphug;
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

thegrammalady
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« Reply #82 on: October 05, 2010, 12:48:14 PM »

 :2thumbsup;  good to hear things are going so well
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If you can smile when things go wrong, you have someone in mind to blame.

Lead me not into temptation, I can find it myself.

Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain.

Some mistakes are too much fun to only make once.

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Chris
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« Reply #83 on: October 06, 2010, 07:48:55 PM »

Hopping things continue to improve Paris. I'm not a morning person either unless I didn't sleep.
Disiney won't go anywhere, hurricanes haven't moved it yet so it will be there nextyear or when you plan next family vacation.
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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?
paris
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« Reply #84 on: October 07, 2010, 11:03:16 AM »

Clinic day.  Everything is going just the way it should   :2thumbsup;    I got to talk to another patient who got her kidney a week before me and it helped to hear how she felt, energy, appetite, etc.   I feel like I am on track.  It is reassuring to have them tell me things look good.  Although, my husband is still concerned about my level of activity. He said today he worried my brain wasn't being "worked" enough.  LOL    Bless his heart!   

Last night, the gang was at Whispering Canyon's for dinner at D W.  They all were wearing buttons that said "we are celebrating our Mom's (Nana's, mother-in-laws, etc) new kidney.  The waiter wanted to know about the buttons. Beth called me during dinner and suddenly, the waiter was on the phone!  He asked for everyone's attention in the restaurant and proceeded to tell them that my family was there, but I couldn't be because I just got a new kidney.  He asked everyone there to wish me well and good luck!  So the whole restaurant is yelling good wishes to me!! Made me teary.  Then he got back on the phone and said he would be waiting for me when I could come.  Wasn't that special?  Then I talked to 4 of the grandkids. Eliza(10) lost it. She was sobbing and telling me how much she misses me.  My son, Todd, said she was having a hard time without me and just wanted me there.  Now that really made be teary!!     But, I know how fortunate I am and how much they all love me.    My cup runneth over.   
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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 #85 on: October 07, 2010, 11:44:32 AM »

Made me teary too!
I know you have many more wonderful times ahead of you!
 :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
Sluff
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« Reply #86 on: October 07, 2010, 11:45:01 AM »

Thanks for sharing the wealth!   :-*
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paris
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« Reply #87 on: October 08, 2010, 01:00:26 PM »

Co-ordinator just called.   They think I have a UTI, but I have no symptoms.  They are going to grow the culture over the weekend and get a definate answer.  But, you all know the routine, if I run a fever or have pain, call immediately.   I think it is fine  (thinking positively).  Now I am going to go drink a ton of water.    :rofl;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Zach
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"Still crazy after all these years."

« Reply #88 on: October 08, 2010, 01:28:29 PM »

Paris, try some cranberry juice, too!
 :-*
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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
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My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
paris
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« Reply #89 on: October 08, 2010, 04:08:56 PM »

Good idea Zach   :2thumbsup;   I had forgotten about cranberry juice!
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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 #90 on: October 18, 2010, 07:45:52 AM »

Long day at the transplant clinic tomorrow.  1st appointment is at and 9 second at 3.  Finally get all the staples out!   My surgeon leaves them in longer than any of the others.  I wondered why. He uses a higher cauterization during surgery, so it takes a little longer for the incision to heal. Not my skin!  It heals very quick and grows over the staples.  Fun.

Then I go to have the stent removed in the afternoon.   Bassman, I am thinking of you!  Think some good thoughts for me--- a camera and 5 inches!!!!     :rofl;   This is the only thing in the whole transplant process that I am not looking forward to!  But, it will be over
tomorrow   :2thumbsup;

Overall, things are great.  Still need the creatinine to go down  *crossing fingers*.  Patience.  That is what kidney disease has taught me - patience.       I have not felt like taking a nap for 5 days now!  Muscle strength needs work and stamina, but I'm doing more now and feel good about it.  Week by week, I see a difference.   :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 #91 on: October 18, 2010, 11:33:55 AM »

REMEMBER, if they say you can watch on the screen DO NOT look until the camera is in!  Learn from my  mistake... :puke;
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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
okarol
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« Reply #92 on: October 18, 2010, 01:07:05 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
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« Reply #93 on: October 18, 2010, 02:55:00 PM »

It's really not that bad,  I didn't mean to frighten you.  I watched the whole thing on the monitor.  Kind of cool really everything was nice and pink on the inside.

Take slow deep breaths as they guide the scope in and it is a lot easier.  Let us know how it goes!
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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
paris
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« Reply #94 on: October 18, 2010, 05:06:08 PM »

Thanks Kelly, Okarol, and Bassman!  The funny thing is, I never look too far ahead or worry before hand.  And I tolerate pain very well. (I think it is pointless to scream and cry).  But this just kind of creeps me out!   5 inches of anything inside of me that shouldn't be there is a little gross.    I didn't flinch at the biopsy and I love watching them do sonograms or echocardiograms.  So maybe the monitor will keep me very entertained!!!  Or I will go to my happy place and swim with the sea turtles!  (Like Kelly and her dolphins!)     Note to self, do not look until the camera is in!!!! 

I'll tell you all about it tomorrow night!    :rofl;
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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 #95 on: October 19, 2010, 02:39:51 PM »

All foreign objects are gone from my body!!  I had such a great doctor doing the stent removal.  I told her I needed to know everything that was going on, so she was great at explaining what was going to happen.   I loved watching the monitor.  They showed me where the native kidneys were attached to the bladder and then up at the top, where the new kidney is attached.  Fascinating! And to see that pretty pink kidney was amazing.   Bassman, you would have been proud of me!  One of the easiest procedures I have had.   :2thumbsup;

Best news of the day-----creatinine is 1.8!!!!!!!!!!!!!!!!!!!!!!!!!  Sean the kidney is still waking up and doing good.  It hasn't been that low in years.  They added magnesium to my pill intake.  3 times a day.  That may explain muscle weakness.   Anyone else take magnesium?  I would like to know more about it. 

Good day, good labs.  Who could ask for more?
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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 #96 on: October 19, 2010, 02:51:39 PM »

 :bandance; :clap; :yahoo; Yay for that FABULOUS number paris!!!
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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
kellyt
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« Reply #97 on: October 19, 2010, 06:43:56 PM »

Great creatinine level, Paris!  I'm super duper happy for you and Sean!!!    I didn't have to take magnesium.  What are you taking it for?
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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
natnnnat
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« Reply #98 on: October 19, 2010, 11:32:46 PM »

I think Gregory takes magnesium Paris... I must ask him why tonight.  Will report back.
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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.
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« Reply #99 on: October 20, 2010, 04:24:47 AM »

Paris, I checked with Gregory about taking magnesium.  He does take it , but it wasn't prescribed by his kidney doctor.  He was seeing a psychologist for a little while, who suggested he take magnesium,  B complex and Zinc, for depression.  He did so, stopped seeing the psych, and appears happy with that.  And his skin seemed to be clearer too. 
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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.
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