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Author Topic: Ascites  (Read 17928 times)
jeannea
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« on: August 18, 2014, 03:25:07 PM »
I'm in the hospital. Over the last three weeks I've gained 10 pounds and my abdomen has swelled up. It's all over, even up top right under the diaphragm. I came into the ER and they kept me. I had a CT scan and a chest xray. Tomorrow is an echocardiogram and paracentisis. That second one? They drain the fluid out of the peritoneal cavity. They don't know why this is happening. Liver problems but my liver function tests were good. Cardiac problems maybe. A leak somewhere like in my bladder. I have them stumped as usual. They drain the fluid and send it for testing for everything under the sun.

I feel like if they poke the drain in I'll explode like a balloon.
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Ninanna
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« Reply #1 on: August 18, 2014, 05:18:21 PM »
 :cuddle;

Aww Jeannea, I'm so sorry to hear this. I hope they are able to figure it out and get you home fast. Hospital stays are no fun.
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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
Rerun
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Going through life tied to a chair!
« Reply #2 on: August 18, 2014, 08:27:05 PM »
Please keep us posted.  I'll pray they find out what is going on with you.  So do they have you on fluid restriction?

               :pray;
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jeannea
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« Reply #3 on: August 19, 2014, 01:14:03 AM »
I'm NPO after midnight for the procedure. I have a slow saline drip. But no fluid restriction. I'm up in the middle of the night because who can sleep here?
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SooMK
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« Reply #4 on: August 19, 2014, 07:43:34 AM »
So sorry to hear this. Hope they figure it out soon and you can get home ASAP.
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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.
Deanne
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« Reply #5 on: August 19, 2014, 07:57:05 AM »
I'm sorry you have to go through this. I watched a couple of YouTube videos on the paracentisis procedure. At least the procedure itself looks fairly straightforward and you'll likely be much more comfortable after it's done. I hope it provides easily resolvable answers for you.
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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
lainiepop
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« Reply #6 on: August 19, 2014, 11:29:47 AM »
So sorry you're in the hospital, hope they can sort everything out soon. I sympathise with the not sleeping, i can never sleep in there xxx
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1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
cassandra
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When all else fails run in circles, shout loudly
« Reply #7 on: August 19, 2014, 12:14:58 PM »
Did they find out what's going on? Sorry you have to go through this. Sending lots of healing vibes your way.
Love, Cas


            :flower;
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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
jeannea
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« Reply #8 on: August 19, 2014, 02:48:04 PM »
So far nothing. They drained 2000 mL and sent it off to be tested for everything. The initial results were fine. Some results will take time. The Echo showed a little bit of a leaky valve but they don't think it is serious or related to the swelling. I am waiting for a liver ultrasound but the liver blood tests are good. They'll probably send me home to wait.

Very frustrating. I wish they knew something.
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jeannea
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« Reply #9 on: August 20, 2014, 09:02:27 PM »
I'm out of the hospital but I'm not a happy camper. The fluid is not gone. Now it's collecting in odd pockets instead of being distributed throughout my abdomen. All my tests are normal so far with some fluid tests still to come. I don't even know what doctor to consult. No one else does either. I'm feeling a little desperate.
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Ninanna
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« Reply #10 on: August 21, 2014, 05:20:06 AM »
 :cuddle;

So sorry to hear this Jeannea. I hope they figure out what the next step is soon.
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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
kristina
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« Reply #11 on: August 21, 2014, 06:49:56 AM »
I am very sorry for what you are going through, jeannea 
and I do hope you find an answer soon and treatment...
I just wonder, have you tried to research on the Internet about your symptoms
to get an idea what sort of doctor you could/should consult?
Whenever I had a very odd medical problem in the past,
and no doctor could diagnose what it was, because they had no experience
with "my" particular variations of Systemic Lupus (SLE) and MCTD,
I always got some answers from medical write-ups I found in the British Medical Association archives,
or more recently on the Internet...
Best wishes and good luck from Kristina.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
jeannea
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« Reply #12 on: August 21, 2014, 07:45:07 AM »
I have researched on the internet. The cause of the ascites determines which doctor. If it's caused by liver problems, that's who you see. If it's caused by heart problems, that's who you see. Since all tests are normal so far, I don't know who to see. I'm still waiting for some tests on the fluid they removed.
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kristina
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« Reply #13 on: August 21, 2014, 10:46:40 AM »
I am so sorry, jeannea and I do hope,
the tests of the removed fluid give the doctors a clue
and you get the necessary treatment soon.
Best wishes and good luck from Kristina
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
noahvale
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« Reply #14 on: August 21, 2014, 10:55:25 AM »
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« Last Edit: September 18, 2015, 08:31:16 PM by noahvale » Logged
jeannea
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« Reply #15 on: August 21, 2014, 11:09:39 AM »
I had a CT scan which should have shown the pancreas. I had pancreatitis before and it hurt like hell. I don't have pain in that area. I'll have to look through the blood tests and see if they did anything for pancreas. The initial results of the fluid came back normal. I just don't know. Today the fluid has all migrated very low in my abdomen.
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noahvale
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« Reply #16 on: August 21, 2014, 11:15:34 AM »
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« Last Edit: September 18, 2015, 08:30:36 PM by noahvale » Logged
jeannea
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« Reply #17 on: August 21, 2014, 02:02:44 PM »
Thanks. I'll do some reading. I don't get in a lot of knock down drag out fights but maybe I forgot one.  :)
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cassandra
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When all else fails run in circles, shout loudly
« Reply #18 on: August 21, 2014, 03:37:28 PM »


          :flower;           :flower;


Lots of love, and healing vibes, and that they very soon find the cause, 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 #19 on: August 22, 2014, 03:01:28 PM »
This sounds very stressful. I hate not knowing the answers. What's taking them so long!?!?!?!
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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
jeannea
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« Reply #20 on: August 23, 2014, 08:41:25 AM »
I know some tests take longer. I forget the name... the kind where they grow stuff on the slides. (damn brain injury leaves me without words) Also I think all the tests for cancer take longer. I am very frustrated. I'd be completely off my rocker if my creatinine wasn't so good.
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jeannea
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« Reply #21 on: August 29, 2014, 10:52:10 PM »
The culture results were negative. The cytology results were negative. Those were all tested from the fluid removed.  My PCP added some autoimmune markers and a repeat liver series. Those blood tests are all good. I see my PCP again next week. She is trying to help me but doesn't know what to say either. I have lost a couple pounds but I'm not sure the fluid is really less than last week. It's not that I want to have cancer or hepatitis; I just want to know how to get back to normal. I still wonder if it's some new awful twist of my on and off CMV problems. Last time I was sick for 3 years before anyone believed it was a CMV flare-up. They did the blood test for CMV and it was negative. It was also negative when CMV colitis was trying to kill me.

My creatinine with multiple tests goes back and forth between 1.2-1.3. But I worry that my kidney will fail this time too. It's all de ja vu to me except ascites instead of diarrhea. I'm sick of this. Completely. I couldn't even go to the US Open this year (tennis) for the first time in years.
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noahvale
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« Reply #22 on: August 30, 2014, 04:05:26 PM »
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natnnnat
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WWW
« Reply #23 on: August 30, 2014, 08:33:46 PM »
This sucks jeannea.  CMV can get weird, but that weird?
Gregory says his CMV is flaring up when his feet swell a bit, when his blood pressure goes up, when he feels a bit fluey... whenever he can't explain his symptoms really.
What we need is a kind of expert medical librarian service you can go to and say, help me find papers similar to my symptoms so I can show them to my PCP. 
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
jeannea
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« Reply #24 on: August 30, 2014, 10:56:37 PM »
That would be quite a librarian.
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