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Author Topic: Baby bro is in the hospital...  (Read 7524 times)
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #25 on: May 21, 2011, 05:23:08 PM »
well did a CT scan and they said a bile duct to the liver is inflammed. Neil seemed relieved that they found something. Giving him more antibiotics and dialysis treatment. His fevers seemed to have stopped for 9 hours now and he is getting around more. I think he gets annoyed with me making him walk around, but oh well! :) Hematacrit and other blood work going in the right direction! Yeah!! Thank you Lord!!

xo,
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
YLGuy
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« Reply #26 on: May 21, 2011, 05:30:14 PM »
 :2thumbsup; Finally some good news!
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lmunchkin
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"There Is No Place Like Home!"
« Reply #27 on: May 22, 2011, 03:55:48 PM »
Fantastic! About time a little something goes yalls way.  Stay on him Ru, cause you of all people know how it effects the whole system!  Please, keep us updated on him.

lmunchkin       :flower;   

P.S. I bet you were frustrated when doc said that.  It makes me mad to hear it cause they should be more mindful of others.  :Kit n Stik;
« Last Edit: May 22, 2011, 03:57:58 PM by lmunchkin » Logged
11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
lawphi
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« Reply #28 on: May 23, 2011, 09:38:18 AM »
R-  I am so sorry!
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Girl meets boy with transplant, falls in love and then micromanages her way through the transplant and dialysis industry. Three years, two transplant centers and one NxStage machine later, boy gets a kidney at Johns Hopkins through a paired exchange two months after evaluation.  Donated kidney in June and went back to work after ten days.
kitkatz
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« Reply #29 on: May 26, 2011, 07:36:49 PM »
I hope things are getting better.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

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
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #30 on: May 27, 2011, 05:10:59 PM »
Hey folks Neil is out of the hospital now. One day out and he is doing well!! The doctor said that his liver is pretty bad and he needs to be followed by a liver doc.  The portal hypertension is causing the stenosis (narrowing) of the bile ducts. The fevers could just be a side affect from the liver starting to go bad. We know this is part of the disease but with his high PRA it makes me nervous he is going to find himself in a serious situation and my sister won't be a match....so now I have to find out this plasmaphersis stuff for him. I think he is just  scared to think about getting another transplant....

Oh well the tech infiltrated me tonight (not in a good way!) have to go ice my arm now!

xo,
R
« Last Edit: June 02, 2011, 12:07:45 PM by rsudock » Logged
Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
YLGuy
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« Reply #31 on: May 27, 2011, 10:00:05 PM »
I am glad he is out of the hospital.  Please keep us posted.  Sorry about the infiltration.
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lawphi
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« Reply #32 on: May 28, 2011, 03:31:54 PM »
R-  here is a link to jump start your research.  I am sure there are programs closer to you for Plasmapheresis.

http://www.hopkinsmedicine.org/transplant/Programs/InKTP/crossmatch.html

http://discoverysedge.mayo.edu/abo_posxmatch/index.cfm

You will be an HLA expert shortly!  You can ask for HLA profiles from your coordinators.  Your sister can request hers when she has her blood work done. 
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Girl meets boy with transplant, falls in love and then micromanages her way through the transplant and dialysis industry. Three years, two transplant centers and one NxStage machine later, boy gets a kidney at Johns Hopkins through a paired exchange two months after evaluation.  Donated kidney in June and went back to work after ten days.
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #33 on: June 28, 2011, 09:44:13 PM »
Just an update on the baby bro...Thursday he graduates from Broadcasting school! yeah!! He has an appointment with the liver doc tomorrow, they are going to do a jugular biopsy. They cut the artery in your neck then send something like a cath down the artery to the liver and cut a chunk of the liver out to biopsy. They do this instead of the biopsy through the stomach in case there is any bleeding it goes right back into the vascular system.

Neil and I were talking about what an amazing year it has been. I am just so happy I made the decision to bring him with me when I moved for the new teaching job. He seems so much more happier then living with my mother. He has friends and is looking for jobs. He feels so much more productive and proud. I would endure dialysis all over again if I got the same result. Everything does happen for a reason. Once he gets a job with private insurance we will move forward with plasmaphersis. Let's be honest they probably aren't jumping on Medicaid patients to get this done and help them live a healthy and happy life are they? Also now with seeing me go through a second transplant he is more confident he can do it again himself.  No wonder I am the big sister...I have to lead the way for everything!!!!   :2thumbsup;

Love to you all!
R
Logged
Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
MooseMom
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« Reply #34 on: June 28, 2011, 10:02:50 PM »
He is so lucky to have you there by his side.  What a wonderful sister you are! :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."
YLGuy
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« Reply #35 on: June 28, 2011, 10:11:55 PM »
Yes, he is lucky.
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cariad
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What's past is prologue
« Reply #36 on: June 29, 2011, 07:26:51 AM »
Rachel, that is just so fabulous for you and your brother. What a star you are, and many congratulations to your brother on his graduation. With his challenges, he should be that much more proud that he made it through.  :flower;
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woodsman
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« Reply #37 on: June 29, 2011, 04:26:23 PM »
He will pull threw just fine!!!! :grouphug; :grouphug; :grouphug;
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lmunchkin
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"There Is No Place Like Home!"
« Reply #38 on: June 29, 2011, 04:52:37 PM »
RU, you may have very well saved his life by taking him in!  Yea, I'd say that the sacrificies you made on Neils behalf, are now your rewards!  What an AWESOME Big Sister you have been!  God Bless you for all you do!  You are amazing!!!!

lmunchkin     :flower;
Logged
11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #39 on: July 03, 2011, 10:29:09 PM »
Neil and I were talking today and I offered to do home dialysis training. He didn't seem very interested as he likes his nocternal 3 x a week, but he will think about it. I just want him to be the healthiest he can be...of course happy too! The only good thing about home D is that he could travel easier...well that's what he said anyhow.

He goes for his liver biopsy end of the month....

Xo,
R
Logged
Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
MooseMom
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« Reply #40 on: July 03, 2011, 11:58:25 PM »
What a wonderful offer re helping with NxStage training.  I'll be interested to see if he decides to do that.
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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."
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #41 on: July 04, 2011, 11:14:33 PM »
Correction he goes in for the liver biopsy on wednesday! I have to meet the surgeon and neph later in the afternoon so, hopefully everyone gets the attention they need! Thankfully Aaron has the day off of school so, he will help balance Neil and I's appts.

Love to you all!
R
Logged
Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
MooseMom
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« Reply #42 on: July 04, 2011, 11:56:40 PM »
What are they expecting to find in the liver biopsy, if anything?
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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."
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #43 on: July 05, 2011, 01:45:19 AM »
Hey MM,

Before they will give Neil a kidney transplant they will check to see if he needs a liver as well. If they find he needs both he will be listed that way on UNOS, but I am unsure what that means for a living donor who is only willing to give a kidney...

With our kidney disease, the portal hypertension ends up scarring the liver and the person usually needs a new liver eventually...hopefully this will not be Neil and I's immediate future...

Xo,
R
Logged
Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
rsudock
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Posts: 1351


will of the healthy makes up the fate of the sick.
« Reply #44 on: July 07, 2011, 07:16:28 PM »
OMG Neil's liver biopsy, which is usually 45 min procedure, took 4 hours!!! By about 2 1/2 hours into it I started to get really agitated. Finally a nurse came out and said that they preped the right side of the neck vein and the vein was clotted off. so then they had to prep the other side. Then he keep oozing from the cuts in his neck.
I wasn't very happy about this day. His BP was super high, they had to stick him 4 times to get an IV, and the doctor NEVER came out to talk to me!

So today Neil gets this call from the liver institue trying to set up an appointment for an education class on getting a liver transplant! WTF! He hasn't even talked to the doctor yet about the results!! People are really dropping the ball!

So Neil called the doctor's nurse and complained and said, "Is it really that bad. I don't feel that sick. I'm not yellow or itchy." So they gave him appointment to get the results next Wednesday...
Logged
Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
boswife
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us and fam easter 2013
« Reply #45 on: July 07, 2011, 07:24:39 PM »
oh my goodness :(  It's harder dealing with the not knowing, or not trusting than it is an actual illness.  If you KNEW what to do you can take steps with confidece toward healing.  Im so sorry your going through ALL this crap and your brother too.  Im sure glad you have each other to lean on but geesh!  I wish you both well  :cuddle;
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
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