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Author Topic: Mad and alone  (Read 10277 times)
MooseMom
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« Reply #25 on: February 27, 2015, 01:10:53 PM »
Aw, jeannea  :cuddle;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #26 on: February 28, 2015, 01:50:56 AM »
Quote from: jeannea on February 26, 2015, 02:49:12 PM
ICU in my transplant hospital. Good nurses right now. Docs are not much help.

 :( How are you today?  :grouphug;
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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
jeannea
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« Reply #27 on: March 01, 2015, 05:09:17 AM »
I am still in the hospital. Need to get stronger to go home. I'm in a more regular room with a portable heart monitor and no IV running except occasional albumin. Going to try more food now. Maybe I can leave in a few days. I despise the heparin shots. In short, it sucks to be here but I am glad to be not as sick as I was 2 weeks ago.
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cassandra
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When all else fails run in circles, shout loudly
« Reply #28 on: March 01, 2015, 02:30:38 PM »


     :flower;      :flower;       :flower;        :flower;


So glad to hear that, and you wanting to try more food is a real good sign.

Sending loads of healing vibes, and love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
MooseMom
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« Reply #29 on: March 01, 2015, 02:44:06 PM »
Quote from: jeannea on March 01, 2015, 05:09:17 AM
I am still in the hospital. Need to get stronger to go home. I'm in a more regular room with a portable heart monitor and no IV running except occasional albumin. Going to try more food now. Maybe I can leave in a few days. I despise the heparin shots. In short, it sucks to be here but I am glad to be not as sick as I was 2 weeks ago.

I remember getting a few heparin shots while still in the hospital after my tx, and I remember them being ghastly.  I'm sorry you are having to have them.

I'm glad you are making some progress and hope that things get better very soon.  Did anything show up on your liver biopsy?  Still no answers re: the ascites?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
jeannea
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« Reply #30 on: March 02, 2015, 03:06:48 PM »
I'M OUT!! Finally got discharged. I have to watch my blood pressure. I got a few oxycodone for home 

The results of my tests are not very helpful. In a weird twist, they got a culture from my colonoscopy. It was positive for HSV 1, the cold sore virus. I said huh? How does that get there? What does it mean? No answer to that yet but I have to take 10 days of Acyclovir. I do have issues with herpes viruses. CMV tried to kill me.

Anyway, home to better food and a comfy bed.
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SooMK
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« Reply #31 on: March 02, 2015, 04:52:58 PM »
Congrats on getting home and doing better. I hope you keep on that track.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
cassandra
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When all else fails run in circles, shout loudly
« Reply #32 on: March 03, 2015, 05:12:17 AM »


    :cheer:     :cheer:    Great to hear you are home, and HSV1?


Enjoy home, love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Deanne
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« Reply #33 on: March 03, 2015, 08:21:47 AM »
Are you at least feeling better / able to be mobile? Are you staying with your family for a while?
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
MooseMom
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« Reply #34 on: March 03, 2015, 09:20:51 AM »
Some good news at last!  :yahoo;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
jeannea
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« Reply #35 on: March 03, 2015, 10:36:09 AM »
I went to my parents' house when I left the hospital. My mom wants to take care of me for a little while. My bedroom here is lovely. Comfy bed, comfy pillows, no IV alarms. I am not very strong on the stairs yet.

This Acyclovir is a pain. They have me on 800 mg 5 times a day. I have my phone set with alarms. To me it's a really aggressive dose. Maybe I need it.
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jeannea
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« Reply #36 on: March 16, 2015, 03:17:29 PM »
Update: I had my follow up appt with transplant clinic today. They have nothing to tell me as far as why I have ascites. My wonderful doctor there says he doesn't want to speculate since he really doesn't know enough about liver disease. Everyone was glad to see me doing better. I was there awhile so I could see the regular people and both of my favorite doctors. The one said he was so relieved to see me because he saw me twice in the hospital, once in the beginning and once in ICU, and he felt so awful seeing me that sick.

I finally have my appt for a second opinion. I'll have to be up at an ungodly hour to get there. What can you do? That's this Wed.

In other news, I have lost 20 pound in two weeks. I don't know how much is the extra diuretics and how much is the antiviral but my stomach is shrinking. I still have some fluid but nowhere near as much. It feels so much better.
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PrimeTimer
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« Reply #37 on: March 17, 2015, 11:49:35 PM »
Glad you are doing better. You certainly have endured a lot. Hope they will find the cause of the ascites, altho no doubt you are tired of all their poking and prodding and of course, let's not forget, the "biggie"...the nitemare of life in the hospital.
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Angiepkd
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« Reply #38 on: March 18, 2015, 04:10:01 PM »
Yay for mom's house and no hospital!  Hope you get answers soon and keep getting stronger! :bandance;
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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!
Deanne
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« Reply #39 on: March 19, 2015, 11:03:53 AM »
I hate this kind of mystery! It sounds like you have a caring medical team though. I like it when they're honest enough to say "I don't know" instead of being arrogant and pretending they know everything.

Blah on the ungodly hour to get up. I used to be fine with things like that, but now the idea of it makes me cringe.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
MooseMom
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« Reply #40 on: March 19, 2015, 02:41:07 PM »
I'm glad to hear that you are doing better and am wondering if you got a second opinion that made any sense!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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