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Author Topic: Hey guys I'm back! Down but not out  (Read 3510 times)
deniferfer
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My nickname is princess

« on: August 23, 2013, 07:15:08 PM »

As many of you know back in Feb I had unexpected major surgery. Well for the last 6 months I had a open wound that wouldn't heal. The surgeon that did the work gave me excuse after excuse to why it wouldn't heal. Finally throwing his hand up saying I can't do anything more and that I need to go to a bigger hospital but never referred me. My Neph and I try to find another general surgeon to take my case and none would. My Dr was told by one drs office I needed a plastic surgeon..I was like ummm what?? My boobs are fine!  :rofl; Well no luck down that road either.

Well this us to July 31..I had dialysis the day before and when I got home I felt very sick, I was cold, sick and didn't want to move. Thinking i could sleep it off I went to bed and called it  night. The next morning I got up and felt the same so I headed to the D center ( I had a appointment there to meet someone going to PD and wanted to talk about my experiences). I get there and tell them how I feel and that I'm not doing so god. One of the nurses looks at me and says yeah your pale and takes my temp which was fine but when they checked my blood pressure it was 66/33. The head nurse says at the moment that I have to go on the machine now! They hook me up and give me tons of meds to raise my BP and draw lots of blood. They also start a antibiotic on me. They get my BP up and send me home saying if I feel bad again I need to go to ER. Well I get home and about a hour later the head nurse calls me and tells me that they found that i had a infection in my blood and had to go to the ER now. So I called my mom and had her meet me there. They get me admitted and check my BP and it was low once again! So before I could even get comfy I was sent to ICU!  There they started 2 IVs and gave me very strong med to raise my BP. (90/50 was a win!) The next day they start to run tests on me. They did a pelvic ultra sound and no it wasn't fun being catheterized and have water placed into my bladder. Then they sent me in to have my wound probed, they just numb the skin around the area but no matter how much I asked they wounldn't give me pain med and relax me! Those tests come back cler but they know that there is something wrong with the wound. My dr decides that she is going to send me to  major hospital. So I'm sent the next day to UCLA. (about 4 hours away from my home). There they get me in and right off the put in a central line so they can stat giving med with out messing with the IVs. I barly have time to think and they got it in and they are checking my heart running echos and all kinds of stuff. Then at 3am they send me in for a cat scan too! The next day they put in a arterial IV in my left hand, this was o listen to my pulse.  Then they did a test where they had to go thru my mouth to see and take picks of my heart in 3D. Well it was decided they needed to do surgery on me again. That they didn't what they would find but they needed to go back in. So it was set up and I went into surgery the next morning. I came out of surgery, with 4 drain bags, that i called my possum babies cuz the would hang them off of me. lol  and a nice big open wound in my tummy. They tell me they found pockets of infection all throughout that area and hand to wash it all out. That I'm lucky I was doing as well as I was! From there the goal become to get my BP to stay up on its own and get off oxygen so I could be removed from ICU. After a few days they got me stable and I ws sent to the normal ward. I had a lot more freedom and could use a bathroom behind closed doors! lol They got me off IV pain meds and showed me how take care of the wound and drain bags. The dr kept me over the weekend to watch over me, they where able to remove 2 of the drain lines and that was a relief to have less to worry about!

Now I have a home nurse that comes out and checks on the wound. She is very pleased that it is healing very fast and is already at less then half the size it was! Then i go to D and they give me IV antibiotic and i continue to do that for the next 4 weeks. By then i should be fully healed! The hard part is not overdoing it. I wnt to get back into the game and do everthing i did before. But I know I have to behave. Cuz I already set a goal that i wil be in Vegas with the rest of you guys in Oct!!   




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1981-1995: Perfectly fine
1996: November, started feeling sick
1997: April, creatine at 17 and began dialysis    
1997: May Place on PD
2006: Had to replace PD tube
Angiepkd
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« Reply #1 on: August 23, 2013, 07:42:08 PM »

Glad to hear you are feeling better!  Take it easy so you can make it to Vegas!   :cuddle;
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
UkrainianTracksuit
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« Reply #2 on: August 23, 2013, 07:50:16 PM »

Wow, now that is some medical saga!  I send healing thoughts and hope everything works out wonderfully.  I loved the plastic surgeon quip.   :lol;
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okarol
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« Reply #3 on: August 23, 2013, 07:53:17 PM »

 :2thumbsup; You had me really worried! Having you well is a real gift - take care!  :clap;
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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
Riki
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« Reply #4 on: August 23, 2013, 08:36:53 PM »

glad to see you back again... that's crazy.. the doctor saying he couldn't do anything more for you.. and you had an open wound!  I would think that infection would be the first thing to look for.. some doctors are stupid..

I'm glad they figured it all out and you're starting to feel better
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
galvo
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« Reply #5 on: August 23, 2013, 10:38:00 PM »

That was an ordeal and a half! You're a tough 'un to get through it!
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Galvo
willowtreewren
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My two beautifull granddaughters

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« Reply #6 on: August 24, 2013, 01:09:31 AM »

Geeze, Louise! What an awful story.

I'm glad you are are the mend and back in the game!

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
Joe
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« Reply #7 on: August 24, 2013, 07:23:13 AM »

Good to see you back! Heal quickly!
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Live simply. Love generously. Care deeply. Speak kindly.
Leave the rest to God...
justme15
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« Reply #8 on: August 24, 2013, 09:05:16 AM »

glad that you are on the road to recovery! you are one tough cookie! :cookie; :bandance;
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Jean
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« Reply #9 on: August 24, 2013, 10:30:22 AM »

Good to see you back. You sure have had a time of it. Get better, okay???    :flower;
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One day at a time, thats all I can do.
Big E
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« Reply #10 on: August 24, 2013, 02:00:30 PM »

 :cheer: I'm so glad to hear from you again, Jennifer. Sounds like you'll recover nicely, and I'm really looking forward to seeing you at our meet-up. Hope you can make it.
  :2thumbsup; :bandance;
Love to you and and your devoted sis MissJazzyEmily

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PKD diagnosed June 1996
Started in-center hemodialysis May 2010
amanda100wilson
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« Reply #11 on: August 24, 2013, 03:19:08 PM »

Woe, you've been through the mill, girl.  Glad you are on the mend!  :2thumbsup;
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
Poppylicious
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« Reply #12 on: August 24, 2013, 04:05:41 PM »

Awww, bless you!  Sending you oodles of *huggles* for a very speedy recovery. 
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
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Everything was beautiful, and nothing hurt.
Chris
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« Reply #13 on: August 25, 2013, 04:19:33 AM »

 :thumbup;
I wish I was going to Vegas to see you, Jazzy, and your mom again, but health has gotten in the way.
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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?
jeannea
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« Reply #14 on: August 25, 2013, 01:11:54 PM »

Wow. That sounds like a nightmare. The first doctor was negligent. Any doctor should know that a wound that doesn't heal is a problem.
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cdwbrooklyn
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« Reply #15 on: August 26, 2013, 11:31:01 AM »

Wow, what an ordeal.  Glad you are doing well; get better soon.
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Dailysis patient for since 1999 and still kicking it strong.  I was called for a transplant but could not get it due to damage veins from extremely high blood pressure.  Have it under control now, on NxStage System but will receive dailysis for the rest of my life.  Does life sucks because of this.  ABOLUTELY NOT!  Life is what you make it good, bad, sick, or healthy.  Praise God I'm still functioning as a normal person just have to take extra steps.
deniferfer
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My nickname is princess

« Reply #16 on: August 28, 2013, 07:06:15 PM »

Hey guys! Thank you again for all your sweet messages and support.  I have a update! I just saw my home nurse today and she says I'm going great!! The wound is now only 3 inces long, .6 cm wide and .8 cm deep. That's like nothing!  I still have the drain lines or my possum baby twins. One side is doing better then the other. But both are looking good and I see the dr in a week that is looking after my infection.  So hope that will be all good news. I know I'm going to get better for Vegas! I have to go, it was so much fun last year!!  Right now I'm very hopeful and I'm going keep being good and resting. ( trust me this is a challenge lol) but it for my greater good! =)
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1981-1995: Perfectly fine
1996: November, started feeling sick
1997: April, creatine at 17 and began dialysis    
1997: May Place on PD
2006: Had to replace PD tube
kit78
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« Reply #17 on: August 29, 2013, 09:06:11 AM »

Thank Gos you are coming out of that nightmare!  So glad to hear you are doing better.
 :grouphug;
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Inherited PKD from my Mother who died at age 52
2001 Transplant - Blessed...only on list for 4 days
2012 Lost Transplant and had Pneumonia
2012 June - started Dialysis
2012 December -  Back on Transplant list
galvo
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« Reply #18 on: August 29, 2013, 05:02:27 PM »

I love good news!
 :flower;
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Galvo
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