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Author Topic: Worried about the baby brother....  (Read 12369 times)
rsudock
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will of the healthy makes up the fate of the sick.
« on: May 29, 2012, 11:08:01 AM »
Many of you know that Neil (brother) has been sick on and off since Janurary...even having a hospital stay or two...

Seems like anytime he is off antibiotics for a couple a days he starts spiking fevers and is sick....I just don't know what to do with him. He probably needs is gall bladder out but I don't think that would cause fevers...does he need more dialysis? (he does thrice weekly incenter NOCTERNAL) Maybe he just can't get rid of this infection because his lack of kidney function...

I know so may of our good people have passed on from these infections they can't clear...just worried about him...

thank you for listening...

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?
jeannea
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« Reply #1 on: May 29, 2012, 02:21:33 PM »
I guess my question would be do they know where the infection is? They could need to change antibiotics. Or for ex when I had c diff I had to do a long taper of my antibiotics to keep it from coming back. Has he seen an infectious disease specialist? It might be worth it.

I'm sorry things are so tough for him.
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MooseMom
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« Reply #2 on: May 29, 2012, 02:33:05 PM »
It is possible that his gallbladder is the source of a low grade, chronic infection, I suppose.

Do you know exactly what kind of infection he has?  I really don't know what the effect of dialysis is on chronic infection.  That's a good question.

I'm really sorry to hear this, and I'm worried for Neil, too.  Please keep us updated on his condition, OK?
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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."
boswife
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us and fam easter 2013
« Reply #3 on: May 29, 2012, 04:14:08 PM »
It's so hard when our loved ones are not well.  Im sorry for the both of you as i know the worries :( and how that initself takes it's toll.  Im sorry sweetheart, and wishing him well, and keeping him in my prayers.  Bless your hearts,,   :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
Traveller1947
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« Reply #4 on: May 29, 2012, 04:27:22 PM »
When a dialysis patient has a fever of unknown origin, it's definitely time to see the infectious disease specialist.  If his albumin (protein) is low, that will make it difficult to fight an infection, but the first step is to find out what's causing the infection to begin with.
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Chris
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« Reply #5 on: May 29, 2012, 10:44:10 PM »
Sorry to hear about your brother. My advice has already been mentioned here, but would add to get a second opinion if possible.
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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
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okarol
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« Reply #6 on: May 29, 2012, 11:47:01 PM »
 :cuddle; I hope he gets an answer to this.
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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
Whamo
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« Reply #7 on: May 30, 2012, 08:05:05 AM »
Keep asking questions.  Keep asking for second opinions.  Squeaky wheels get the grease.
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wvgirl
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« Reply #8 on: May 31, 2012, 07:09:01 PM »
Oh, I feel so bad for Neil. He has been the one to get me through this horrible disease. I hope he gets better soon and gets it figured out. Cody had his gallbladder out a few years ago but I don't know if he had a fever from it and he doesn't have kidney disease. I will be thinking of you and Neil.
Oh, this is me, Jeanne, Kyle and Cody Pittman's Mom. :)
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Jeanne
1988- Chronic Kidney Disease
2005- Biopsy showed IGM Nephropathy
10/2011- Fistula surgery, transplant evaluation-gfr 13
02/2012- On transplant list
05/2012- Started in center dialysis with gfr 9
2 calls for a transplant but still waiting...
lmunchkin
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« Reply #9 on: June 03, 2012, 07:27:50 PM »
Sorry, don't know how I missed this post.

Is he seeing an IDS?  I know J's Primary doctor refered him to an Inf. Disease Specialist years ago.  She is now our Primary Doctor.  She is excellent!
Praying for Neil, Rachel.  Hope he gets to the bottom of this.

God Bless,
lmunchkin
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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 #10 on: June 05, 2012, 11:43:50 AM »
Hi dear friends,
 I have been getting on him about seeing a Infectious Disease doc...when he was in the hospital like a month and half ago...he did see one but they couldn't come up with anything. It is so darn frustrating...It is really weird too because when he gets off his "schedule" he starts feeling sick...by schedule I mean if he doesn't lay on the couch and recuperate the ENTIRE weekend he can't get out of bed Monday...just to tired....like in Chicago all the walking around he did and not having his antibiotics (temporarily ran out for 4 days) he started feeling bad again...they have done everything to him swallowing a camera pill, MRIs, IV and oral antibiotics, hyda scan for the gallbladder, colonoscopy, endoscopy...all within the last 6 months!!! They still can't figure it out...the MRI showed that it wasn't his fake hip either....

The doctor told him to get another bone marrow aspiration, where they take that huge needle and drill it into your hip....I keep getting on him about doing it but he is really resistant....he has had one done already and they are not pleasent at all! Good Lord why don't they put people out for that procedure?

Anyway thanks for your love and support....I will let ya know what is going on with Neil the Deal! :)

xoxo,
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?
Big E
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« Reply #11 on: June 09, 2012, 03:16:34 PM »
rsudock, i agree with you that the medical community should be a little more open to doing painful procedures like bone marrow aspirations under general anesthesia.  Of course it's riskier, but they should at least offer the patient the option...  It's bad enough to be chronically ill without having to be tortured as well!
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PKD diagnosed June 1996
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okarol
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« Reply #12 on: June 15, 2012, 01:00:49 PM »
 :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
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #13 on: June 19, 2012, 08:32:20 PM »
Thursday Neil is getting some Platlets ionized and then the doc puts the platlets back into him...the next day they do a scan to see if the ionized platlets are heading to the infection...please Lord let them find something they can fix and make him feel better.  :bow; Constantly having fevers is no way to live. :(

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?
okarol
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Posts: 100933


Photo is Jenna - after Disneyland - 1988

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« Reply #14 on: June 19, 2012, 09:32:01 PM »
Wow that's amazing - i hope it gives him some answers!  :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
lmunchkin
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« Reply #15 on: June 21, 2012, 07:24:43 PM »
This little guy has been through enough! Yes, I agree, Lord please find this problem & get it fixed. Please tell Neil that we are still holding him up and an answer should come soon, Rachael.  What a sis you have been.  He is very lucky my dear, that you have his Back!!!!

Praying  :pray; for you & him,
lmunchkin :kickstart;

P.S.  You take care of yourself too, Rachael.  You have had a lot to go through and we want you to remain in good health!
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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
MooseMom
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« Reply #16 on: June 21, 2012, 07:31:44 PM »
Quote from: rsudock on June 19, 2012, 08:32:20 PM
Thursday Neil is getting some Platlets ionized and then the doc puts the platlets back into him...the next day they do a scan to see if the ionized platlets are heading to the infection...please Lord let them find something they can fix and make him feel better.  :bow; Constantly having fevers is no way to live. :(

xo,
R

What an interesting procedure!  I have never heard of this, and I really hope they find the source of the infection and/or the cause of the fevers.  What a strange mystery.  Please be sure to come and post about what the docs have discovered.  In the meantime, give Neil our love. 

Life can be so unfair.  I wish God would have some mercy.
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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 #17 on: July 02, 2012, 09:15:13 PM »
well the ionized white blood cells, platlets, whatever were scanned after being injected into him....and guess what?? They didn't find any source of infection.... :stressed;  I don't get it what is happening to my brother....he is wasting away.... :'(


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 #18 on: July 02, 2012, 09:46:11 PM »
Oh Lord, how scary and frustrating!  I just don't understand it!  Do the docs have even a "gut feeling"?
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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 #19 on: July 04, 2012, 09:40:46 PM »
I called the liver docs and started giving them the plea about Neil, "He's wasting away, no quality of life, fevers, pain on the right side...he's had every test known to man...what else does he need gall bladder removed, a TIPPS procedure for his liver??? Next Tuesday at 8am he is seeing infectious disease...again...fingers are still crossed.....

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?
jeannea
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« Reply #20 on: July 04, 2012, 10:14:39 PM »
This has been over a month. You both must be so frustrated. Keep shouting until someone hears you and helps him. I'm so sorry he's not feeling better.
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Mr. B 123
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« Reply #21 on: July 05, 2012, 07:52:03 PM »
rsudock,  Hope they are able to help your brother, will keep him in my prayers.
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lmunchkin
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« Reply #22 on: July 07, 2012, 01:50:44 AM »
 :pray;  :pray;  :pray; and  :grouphug; to you both!
lmunchkin
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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 #23 on: July 07, 2012, 10:59:22 AM »
Thank you my dear friends...
I told Neil the other day, "Don't feel like you have to torture yourself and keep working. I will take care of things." He seemed visibly relaxed...

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 #24 on: July 07, 2012, 11:07:45 AM »
oh Rachel, I wish I could be of more help to you and Neil.  It is just not fair that he has to suffer like this; it makes me so mad.  He seems like such a great guy, and he must be so scared and frustrated.  But he is so lucky to have you as a sister, and if there is anything at all we can do to help, please let us know.  I hope he can get sorted soon.  What are the docs planning next?
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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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