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Author Topic: Jbeany Update  (Read 22994 times)
Mimi
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For any who do not like me I use - prayer.
« Reply #50 on: October 09, 2009, 11:25:41 PM »
So sorry to hear all of this JBeany.  I know you are tired of it.  My
prayers are with you and I pray for a quick recovery for you.  Hang in there girl.
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Death is not extinguishing the light;
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KICKSTART
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« Reply #51 on: October 10, 2009, 03:01:12 AM »
Glad to hear her spirits are lifting , it must be so tough for her right now !
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
rose1999
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« Reply #52 on: October 10, 2009, 08:31:50 AM »
Please keep sending her our love - loads of it  :grouphug; and  :thx; for keeping us posted, I check every day to see how she is doing.
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Sluff
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« Reply #53 on: October 10, 2009, 03:55:33 PM »
 :2thumbsup;  great news.
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jbeany
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« Reply #54 on: October 11, 2009, 10:09:20 AM »
Hi everyone - it's jbeany in person this time!  My family brought me a laptop to use, so I can get caught up on all the posts here.  It's been one heck of a bumpy ride.  As my doc said, only 10 percent of pancreas transplants have complications, but when they do happen, they are very, very complicated indeed.  Currently, I'm on the second week of 6 total of no food except IV nutrition.  My small intestine perforated and began to leak thru my abdominal incision.  The surgeon wanted  to remove the pancreas, but it was too well  imbedded to safely remove at that point.  The current plan of action is to do nothing, and hope the leak will seal and scar together on its own.  In the meantime, I'm working on regaining muscle tone lost from a month of bedrest.  That is being complicated by a hemoglobin that has dropped to 7.  The last few days, I've been too dizzy to sit upright.  I can't tolerate oral iron, so it took a bit  to convince the docs that I needed IV iron.  I finally got my first dose of that last night, and it's working quickly for me - I'm sitting upright typing this now.  They are hoping to transfer me up to the rehab section within the next week, so hopefully the rest of the iron kicks in for me soon.  I will be able to go home with the iv nutrition, so hopefully I won't have to spend the next 5 weeks in the hospital.

One of the patient ed things I've got here says to expect to spend 2 days recovery time for every day of bed rest.  I was on bed rest for 5 weeks straight, so it's going to be a long time before my life is back to some semblance of normal.  I'm trying to focus on the long view- a couple months recovery will be worth it if I can be healthy for years to come.

On the bright side, my kidney is working perfectly, with a creatine holding steady between .8 and .9.  My pancreas is working, too.  I haven't needed insulin or dialysis in month!  I've been using a lidocaine patch during the day, which is surprisingly effective at controlling the pain from my jp drains and my poor, overused incision.

I want to thank everyone for the cards, balloons, and well wishes you've posted!  Okarol called me before she left for Paris, and we had a lovely conversation.  Her postcard said she lit a candle for me at Notre Dame- now that's calling on the direct line!

I'm going to try to catch up on some posts now - I'm a month out of the loop on everyone else's news!
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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.
The Wife
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« Reply #55 on: October 11, 2009, 10:22:31 AM »
I'm so sorry you're having to go through all of this but glad to hear you're still laughing. 

All the best to you.   :cuddle;
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Bill Peckham
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« Reply #56 on: October 11, 2009, 10:34:30 AM »
What a ride Jbeany. I've been on the wrong side of 1 in 10 odds so many times that when I hear 10% of the time this or that will happen I assume it's going to happen.

Not needing dialysis or insulin for a month is pretty exciting, with that working getting over the bed rest will go by fast.
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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
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« Reply #57 on: October 11, 2009, 10:56:04 AM »
It is WONDERFUL to hear from you Jbeany!  :clap; :clap; :clap;

I know you are one determined lady and you WILL regain all your muscle tone.  :2thumbsup;

Keep getting better and better!

 :flower; :flower;

Aleta
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Wife to Carl, who has PKD.
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« Reply #58 on: October 11, 2009, 10:57:12 AM »
Just think, you will be all skinny when this is all over.  :rofl;
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Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
kristina
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« Reply #59 on: October 11, 2009, 11:15:06 AM »
I wish you all the best and a good recovery.
Kind regards from Kristina.
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                                          ...  Oportet Vivere ...
Zach
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« Reply #60 on: October 11, 2009, 11:55:08 AM »
Quote from: jbeany on October 11, 2009, 10:09:20 AM

On the bright side, my kidney is working perfectly, with a creatine holding steady between .8 and .9.  My pancreas is working, too.  I haven't needed insulin or dialysis in month!  I've been using a lidocaine patch during the day, which is surprisingly effective at controlling the pain from my jp drains and my poor, overused incision.


Fantastic!!!!

:-*
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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
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Pam
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« Reply #61 on: October 11, 2009, 12:22:11 PM »
jbeany....It's great you are finally on the road to recovery! I am thrilled for you. Being stuck in the hospital you're missing the beautiful fall days but hopefully you'll be home before you have to follow a snow plow just to get there! If you ever get the chance to come to Vassar with Lynda, please let me know. I'd love to meet you.

Pam
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monrein
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« Reply #62 on: October 11, 2009, 12:49:58 PM »
jbeany...you have no idea how thrilled I was to read a post from you yourself!!!   I am wishing for steady healing so that you can get back into your real life and enjoy those functioning organs.  Many hugs and all best wishes.
Gail
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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)
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Second trx doing great so far...all lab values in normal ranges
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« Reply #63 on: October 11, 2009, 01:40:36 PM »
Great to hear from you jbeany. :bandance; :yahoo;
Sorry to hear you one of the unlucky 10% of the people part. Just goes to show how many of us have had it easy (easier) with our transplants even though we didn't think so at the time.

Concentrate on your goal of getting out of rehab ealy and getting home to rest comfortably in your own home. :2thumbsup;
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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
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Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

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« Reply #64 on: October 11, 2009, 02:17:06 PM »
Take care and keep on getting stronger ! :2thumbsup;
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
paris
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« Reply #65 on: October 11, 2009, 02:34:21 PM »
Well, reading your post was the best thing that I have read in a long time.   I am so glad things are starting to move forward.   It was so good of your ex to keep us updated.  Keep resting and get your strength back.   With the 10% odds, you need to go to Vegas!  You should win the jackpot!   Take care.  We love you.   :grouphug;
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« Reply #66 on: October 11, 2009, 03:39:45 PM »

JB - I am glad to hear from you!
I also lit a candle for you at Sacre Coeur - so let's hope it helps to send some healing your way!
Best wishes to you!
 :cuddle; :cuddle; :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 -
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« Reply #67 on: October 11, 2009, 05:39:06 PM »
 :flower;

Yay JB! At long last you are sitting up and typing!! I am doing a little happy dance down here.  :bandance;
I am so happy the kidney and pancreas are doing there job and it is all starting to go forward.

{{{Hugs}}}  :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle;
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PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
pelagia
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« Reply #68 on: October 11, 2009, 05:54:32 PM »
 :yahoo;  I am so happy to hear that your kidney and pancreas are working.  :2thumbsup;
 :bandance; :bandance; :bandance; :bandance; :bandance; :bandance; :bandance; :bandance; :bandance; :bandance; :bandance; :bandance;
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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
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« Reply #69 on: October 12, 2009, 07:53:35 AM »
That's FANTASTIC news, Jbeany... :bandance;

So good to see you getting back to yourself....

May God bless and protect you....  :grouphug;

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....
jbeany
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« Reply #70 on: October 12, 2009, 12:01:03 PM »
My hemoglobin made it up to 8.6 today.  I managed to stand and walk a bit for the first time in a few days.  I've been doing a lot of stretching exercises in the bed that PT gave me.  I've done so much out of frustration the last couple of days that I was sore and had to stretch everything out to get moving!  The docs describe me as "motivated" - lol.  I still won't be able to move up to rehab yet.  Too dizzy still, and not enough stamina to do the amount of PT in one sitting that the acute rehab expects of their patients. I'm gonna make it, though - no surrender!
 
I got on a real scale today while I was up walking with the therapist. I'm 10 kg's over where my dry wt was on my last dialysis run, and it's all fluid gain.  I can't wait for the rest of it to go away!  At one point, I was over 35 kg's up in fluid wt, so 10 really is an improvement, even if my legs don't look like it!  Of course, after all this, I have no idea what i REALLY weigh.  I may not need to diet much after all this - I might be awfully close to my final wt goals.
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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.
Darthvadar
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« Reply #71 on: October 12, 2009, 12:04:17 PM »
GREAT to see progress, Jbeany...

I hope it all continues to go well, and that you're soon back to your usual frisky self!...

By the way, I love your atavar... Such a tidy kitty!.....

God bless.....

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....
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« Reply #72 on: October 12, 2009, 12:45:28 PM »
Wow , arent you making leaps and bounds ! I admire your determination !  :2thumbsup;
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
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« Reply #73 on: October 12, 2009, 01:10:00 PM »
Your doctors are right. You are determined and motivated!   And an inspriation.  It is so good to log on and see your posts again.  We have missed you.  Don't push yourself too hard.  But I know you want out of there as soon as possible.   Hoping each day you feel a little stronger (and with a little less flluid!)
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Ken Shelmerdine
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« Reply #74 on: October 12, 2009, 01:40:19 PM »
Excellent news jbeany so glad you're on the mend.  :grouphug; :2thumbsup;
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Ken
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