Ascites

[jeannea]

Update: Things are bad. When I went to my PCP she measured my abdomen. I've since gained back 8 cm. the fluid is really uncomfortable. I'm worried about it pressing on my kidney and hurting it. I'm really worried why this is happening.

After I left the hospital I had seen my PCP and she ran extra blood tests. No diagnosis. I had an appt at my nephrologist but only got to see the CRNP. I went to a new gynecologist (finally). She did an ultrasound regular and transvaginal. Nothing appears wrong.

The only other docs I know to try is gastroenterology. I had called soon after hospital stay. They gave me Nov 18. I called my coordinator yesterday and asked if she could help me move up the appt. She assigned it to a secretary who probably didn't even describe my problem and called me and said no sooner appts.

I'm really feeling desperate. I am so uncomfortable. I have almost no clothes to wear. It's hard to sleep. I have a constant cough because the fluid seeps out through my lungs. I was struggling badly with constipation because the fluid is in my abdomen not going to my intestines like it should. Although recently I've switched to diarrhea.

I feel like I have been here before. I was sick for 2 years before I lost my last transplant. I had CMV colitis and it attacked me. I got lots of tests. Everyone said I dunno. So they gave me antidepressants because my disease was "functional." I could probably get in sooner at that gastro office (it's not at the transplant hospital) but I don't trust them.

I feel like giving up.

[obsidianom]

Are you urinating the regular amount for you? It almost sounds like you are retaining fluid from lack of kidney function and in some patients it does end up in the abdomen . (my wife used to get that before dialysis). have they checked your liver and proteins? Ascites can also be from low albumin /proteins from liver issues.

[Deanne]

I know you said you tested negative for CMV, but have they tried treating you for it anyway, just in case? Since your symptoms are similar, it seems like it might be a logical assumption.

[obsidianom]

Did you ever have FSGS? It can cause nephrotic syndrome which causes ascites.    Also ddi they do an ultrasound of the portal veins for portal thrombosis? This can also cause ascites.

[obsidianom]

Interesting article . Are you taking Tacrolimus?

Indian J Nephrol. 2014 Sep;24(5):318-20. doi: 10.4103/0971-4065.133024.

Massive pleural effusion in a renal transplant recipient on tacrolimus.

Nayagam LS1, Vijayanand B2, Balasubramanian S2.
Author information
Abstract
Fluid and salt retention have been described as a side effect of tacrolimus therapy. We report a case of unexplained massive fluid retention with pleural effusion and ascites in the immediate post-transplant period. The patient recovered immediately on conversion from tacrolimus to sirolimus.


KEYWORDS:

Fluid retention; sirolimus; tacrolimus


PMID: 25249724 [PubMed]

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[obsidianom]

Something else to consider:

Strangulated Small Bowel Obstruction After Renal Transplant With No History of Laparotomy: Case Report.

Miura Y1, Sato K, Kawagishi N, Ohuchi N.
Author information

abstract
Strangulated small bowel obstruction is a complication after abdominal surgery, which is rare in renal transplant patients. A 61-year-old man with a strangulated small bowel obstruction underwent renal transplant surgery 7 years before the current admission. He was admitted to our hospital for abdominal pain, nausea, and abdominal distention. An abdominal computed tomography and an ultrasound examination showed intestinal expansion and fluid collection without ascites. His disease was diagnosed as a small bowel obstruction and conservative treatment was begun. However, because of increasing abdominal pain and the collection of ascites, he underwent an emergency laparotomy and was diagnosed as having a strangulated small bowel obstruction. A fibrous cord had formed between the peritoneum (beside the transplanted kidney) and the root of the sigmoid mesocolon, strangulating the looped ileum and causing bleeding necrosis and hemorrhagic ascites collection. The cord and the necrotic ileum were resected, followed by an end-to-end anastomosis. He was discharged 17 days after the surgery in good condition. This is the first reported case of a person having a strangulated small bowel obstruction by a fibrous cord, who did not have a history of laparotomy after renal transplant. A strangulated small bowel obstruction after a renal transplant in a patient with no history of a laparotomy is a rare, but possible postoperative complications should be considered when making a differential diagnosis.


PMID: 25077611 [PubMed - as supplied by publisher]

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[jeannea]

My disease is medullary cystic kidney disease, the recessive kind. I've had two sets of liver function blood tests plus one for autoimmune hepatitis. I had a CT scan and a vascular ultrasound of the liver and spleen. I had an echo. I am urinating properly. My appetite is not what it should be. The ascites fluid they tested was high in albumin.

They refuse to treat for CMV just in case. It's against their policy. Plus I had a full year of Valcyte after transplant and they're not sure if you can build up a tolerance to it. They can try a colonoscopy to test for CMV but it's a matter of getting lucky getting a sample that shows CMV. Last time, over many months, it was 2 colonoscopy, a sigmoidoscopy, and an endoscopy until it was found.

Obsidianom, I am sitting here stunned by your article on ascites and Prograf. I had PRES from Prograf and maybe I'm having a new problem. I am upset that this can happen again. I worry about sirolimus being effective enough. I'll have to call them and have the docs there read up on it.

I cry a lot but I would feel a lot better if we can figure this out before I lose another transplant.

[jeannea]

A few other thoughts.

I have no swelling anywhere else. My legs and arms are not retaining fluid. I am losing weight in the rest of my body while gaining weight in my abdomen.

I know that bowel obstructions can cause ascites. But the gastro dept doesn't seem to care. I have one possible thought on that. The hospital has a system for logging on and seeing test results. Through that system I can send a message to a doctor. I could send one to the dept head. I've met him before during an appt. i don't know if he is deluged by messages. I don't know if I first need to call and try to find my way through to a nurse which is also hard.

I am going to call my PCP. She said she could get me another paracentesis. I want one to be more comfortable.

[PrimeTimer]

A few other thoughts.

I have no swelling anywhere else. My legs and arms are not retaining fluid. I am losing weight in the rest of my body while gaining weight in my abdomen.

I know that bowel obstructions can cause ascites. But the gastro dept doesn't seem to care. I have one possible thought on that. The hospital has a system for logging on and seeing test results. Through that system I can send a message to a doctor. I could send one to the dept head. I've met him before during an appt. i don't know if he is deluged by messages. I don't know if I first need to call and try to find my way through to a nurse which is also hard.

I am going to call my PCP. She said she could get me another paracentesis. I want one to be more comfortable.

Gosh darn I hate to hear of things like this happening to people, especially to someone who has had a transplant! I sure hope you will escalate this to a doctor that will help you ASAP! Hate to say it but sometimes when you have an emergency and others don't think that you do, then you practically have to exagerate your symptoms in order to be "seen and heard", hope you have the inner strength to make all the noise you can! Sounds like you are doing all you can to help yourself so don't take no for an answer if they keep putting you off. Being a transplant patient should put you at the head of the line. Hope you will be feeling better soon!

[obsidianom]

The high albumin in the fluid got me thinking about causes . It means at least the albumin is pulling fluid out of the gut into the peritoneum through osmotis pressure . Here is an interesting article on this . It looks at the cuase of ascites with high albumin in the fluid.


"The serum-ascites albumin gradient or gap (SAAG) is a calculation used in medicine to help determine the cause of ascites.[1] The SAAG may be a better discriminant than the older method of classifying ascites fluid as a transudate versus exudate.[2]
 
The formula is as follows:
 SAAG = (albumin concentration of serum) - (albumin concentration of ascitic fluid).
Ideally, the two values should be measured at the same time.
 
This phenomenon is the result of Starling's forces between the fluid of the circulatory system and ascitic fluid. Under normal circumstances the SAAG is < 1.1 because serum oncotic pressure (pulling fluid back into circulation) is exactly counterbalanced by the serum hydrostatic pressure (which pushes fluid out of the circulatory system). This balance is disturbed in certain diseases (such as the Budd-Chiari syndrome, heart failure, or liver cirrhosis) that increase the hydrostatic pressure in the circulatory system. The increase in hydrostatic pressure causes more fluid to leave the circulation into the peritoneal space (ascites). The SAAG subsequently increases because there is more free fluid leaving the circulation, diluting the albumin in the ascitic fluid. The albumin does not move across membrane spaces easily because it is a large molecule.
 



Contents
  [hide]  1 Differential 1.1 High gradient
 1.2 Low gradient
 
2 References
 

Differential[edit]
 
High gradient[edit]
 
A high gradient (> 11 g/L) indicates the ascites is due to portal hypertension with 97% accuracy.[2] This is due to increased hydrostatic pressure within the blood vessels of the hepatic portal system, which in turn forces water into the peritoneal cavity but leaves proteins such as albumin within the vasculature.
 
Important causes of high SAAG ascites (> 11 g/L) include:
 Low protein in ascitic fluid (< 25 g/L but > 11 g/L): cirrhosis of the liver
 High protein in ascitic fluid (> 25 g/L): heart failure, Budd-Chiari syndrome[3]
 
Low gradient[edit]
 
A low gradient (< 1.1 g/dL ) indicates causes of ascites not associated with increased portal pressure. Examples include tuberculosis, pancreatitis, nephrotic syndrome and various types of peritoneal cancer.
 
References[edit]

[jeannea]

Inner strength... I'm trying but my depression so easily takes over. I did leave a message this morning with my PCP to get another paracentesis done. I need to at least feel a little better and the procedure was pretty easy.

[Deanne]

At times like this, I wish I had better people skills and knew better what to say. "I'm sorry you have to go through this" just sounds so.... so..... nothing. Of course I'm sorry you have go to through this. I'm sure we all are. Being sorry, doesn't fix anything.

[PrimeTimer]

Inner strength... I'm trying but my depression so easily takes over. I did leave a message this morning with my PCP to get another paracentesis done. I need to at least feel a little better and the procedure was pretty easy.

Not that I suggest it but, at times my source of strength has been my anger (huffing and puffing). Or maybe that's what they call "adrenalin". Altho I have to admit, last couple times I saw my doctor I broke down in tears and he was sure quick to help me with things. I haven't gone thru what you have but I have gone thru a lot (hell and back) and use to consider myself quite tolerant of bs, pain and attitudes but not so lately. No one likes to see me get mad but they certainly don't like to see me cry. Hunker down and do what you think will get their attention so you can get some relief. Maybe try an approach you haven't before.

[jeannea]

Thanks everyone. I'll start again on Monday to see what I can do.

[jeannea]

I talked to gastro. I begged and begged for an appt. Apparently I cannot determine if I'm sick. If another doc calls one of their docs they'll consider it, but they say if I want to see gastro I have to go to the ER. So I guess I have to start packing. It's such an expensive option and so hard on my body. It seems like Medicare would disapprove of this.

I did use the messaging system with the hospital's online chart and sent the dept chair a message but I doubt that will make any difference.

[obsidianom]

jerks!!!   THAT IS SO RIDICULOUS.   You shouldnt need a referral to see a specialist.

[jeannea]

Esp when I'm already a patient there. But I haven't been seen since June 2013 so they somehow consider me not enough of a current patient. They do require something when you're a new patient but if you've been seen within 3 years you are NOT a new patient.

I talked to my mom and she'll take me in tomorrow morning to the ER. Yes, I'm over 40 but I hate taking myself to the ER. Then I guess I just refuse to leave until I get a diagnosis since I can't get outpatient appts.

[jeannea]

I guess I should clarify. They will give me an appt and have given me one for Nov 18. I think waiting that long is a problem and asked for something sooner.

[PrimeTimer]

Esp when I'm already a patient there. But I haven't been seen since June 2013 so they somehow consider me not enough of a current patient. They do require something when you're a new patient but if you've been seen within 3 years you are NOT a new patient.

I talked to my mom and she'll take me in tomorrow morning to the ER. Yes, I'm over 40 but I hate taking myself to the ER. Then I guess I just refuse to leave until I get a diagnosis since I can't get outpatient appts.

If for ANY reason you think the problem might be heart-related, that's what I would tell them upon arriving at the ER. Since she hated wait times at the ER, my mother would refuse to go, despite having a history of heart attacks and congestive heart failure. One of the times she let me take her to the ER, I went straight up to the front and loudly announced that I thought my mother was having a heart attack. She was promptly seen.

[jeannea]

I went to the ER. I'm currently in a room on a 23 hour admission. I had another paracentesis. It was a really tough one this time. The lidocaine hurt worse going in. Putting in the catheter was awful. They took 3 liters and I felt like a limp rag. They let me eat after that. I took soft diet instead of regular and that went ok.

My transplant surgeon asked gastro to see me. We'll see if they show up tomorrow. They were also going to call infectious disease. My surgeon is considering whether to switch me from Prograf to Cyclosporin with extra Prednisone or to leave things be. I had one year of cyclosporin in 1998. I got really hairy.

The surgeon says he may have to do exploratory laparoscopy. At this point I'm ready.

[PrimeTimer]

I went to the ER. I'm currently in a room on a 23 hour admission. I had another paracentesis. It was a really tough one this time. The lidocaine hurt worse going in. Putting in the catheter was awful. They took 3 liters and I felt like a limp rag. They let me eat after that. I took soft diet instead of regular and that went ok.

My transplant surgeon asked gastro to see me. We'll see if they show up tomorrow. They were also going to call infectious disease. My surgeon is considering whether to switch me from Prograf to Cyclosporin with extra Prednisone or to leave things be. I had one year of cyclosporin in 1998. I got really hairy.

The surgeon says he may have to do exploratory laparoscopy. At this point I'm ready.

Thank goodness you are IN and didn't take no for an answer! Hate to hear of another's suffering, truly feel sorry for your pain after being so good and strong for your transplant. But now that you're at the hospital and getting tests, hopefully this puts you a step closer to getting an answer and a treatment plan to knock it out and get some relief. Try to rest in-between all the poking and prodding, just let them do their work now and you rest. Good luck, hang tight! Take it one day at a time and as for the pain, take it one hour at a time. Breath, don't let your shoulders tighten up and exhale...think of being somewhere relaxing and let the med staff worry about tests now. If they give you anything to sleep and providing it won't hurt your transplant, I'd take it and say "good nite" and go off to dreamland for a while. 

[jeannea]

I'm going to have a new procedure. Oh goody! :sarcasm:

So far there is no indication of why I have ascites. I finally saw someone from gastro/hepatology! They want to measure the portal vein pressure around the liver and take a biopsy. It's done in interventional radiology. They go in through a catheter in the neck. I will at least get some light sedation for this procedure. No idea how I will feel after it but I am desperate for help.

The doc says there's a genetic liver disease sometimes seen in people with PKD. I always understood I had recessive medullary cystic not PKD. But who knows.

[obsidianom]

Read my post of 9-26-14.   They may be looking at portal hypertension / Budd-Chiari syndrome. I wondered about that on my post.

[jeannea]

I had read about portal hypertension. Back in Aug, I think when they got back two sets of liver function tests with no problems and nothing in the vascular ultrasound, the docs in transplant figured that wasn't it. However, with the fluid coming back, I got a bit pushy. We're not going by the obvious anymore. The initial testing of the fluid still gives no clues. I am not doing the watch and see crap anymore.

I would like to know though what kind of strange mind came up with the procedure I'm having tomorrow. It's a little freaky although fascinating.

[PrimeTimer]

Good luck with the tests, jeannea. Hope you will have answers and a game plan soon. Sometimes when it's not something obvious they have to test for things by "process of elimination".