I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: jeannea 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.
-
: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.
-
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;
-
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?
-
So sorry to hear this. Hope they figure it out soon and you can get home ASAP.
-
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.
-
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
-
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;
-
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.
-
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.
-
:cuddle;
So sorry to hear this Jeannea. I hope they figure out what the next step is soon.
-
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.
-
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.
-
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
-
*
-
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.
-
*
-
Thanks. I'll do some reading. I don't get in a lot of knock down drag out fights but maybe I forgot one. :)
-
:flower; :flower;
Lots of love, and healing vibes, and that they very soon find the cause, Cas
-
This sounds very stressful. I hate not knowing the answers. What's taking them so long!?!?!?!
-
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.
-
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.
-
*
-
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.
-
That would be quite a librarian.
-
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.
-
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.
-
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.
-
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.
-
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]
Share on Facebook
Share on Twitter
Share on Google+
-
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]
Share on Facebook
Share on Twitter
Share on Google+
-
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.
-
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.
-
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!
-
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]
-
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.
-
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.
-
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.
-
Thanks everyone. I'll start again on Monday to see what I can do.
-
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.
-
jerks!!! THAT IS SO RIDICULOUS. You shouldnt need a referral to see a specialist.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
Read my post of 9-26-14. They may be looking at portal hypertension / Budd-Chiari syndrome. I wondered about that on my post.
-
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.
-
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".
-
Did your procedure go ok last week? Are you doing ok?
-
The liver biopsy went pretty well. I got versed and fentanyl in my IV. Then I could still feel the needle with the Lidocaine of course and they gave me a little extra of one of them. I was asleep for most of the procedure in a blue tent of sorts used to keep my face out of their sterile field. I woke up with pain in my shoulder and said something. They said it was normal. Then later a doctor called my name really loud to wake me. They needed me to breathe and hold it a few times. Then I went back to sleep. I woke up to scoot onto my stretcher, slept in the elevator, and woke up to get in bed. Then they made me stay in bed for 2 hours. That was easy. I went back to sleep. I have a decent size mark in that area but it is healing.
They gave me 20 mg of Lasix to take each day and told me to drink a lot. I still have trouble eating and drinking properly but I am trying. More small meals. I still have a lot of nausea. One of the fluid pockets sometimes gets hard at night so it can be tricky going to sleep. Once I am asleep I'm ok. They also wanted blood work Mon and Thurs this week.
I still have no results. I have an appt with transplant clinic this coming Mon. I have an appt with hepatology the next Mon. I feel so frustrated having to be so pushy to get help. But I still need help. I want to know what is wrong and get help even though I'll probably be really unhappy about whatever is wrong.
-
I'm awake in the middle of the night with a headache so I thought I'd type an update.
There's nothing wrong with me. At least that's what my tests show. The liver biopsy shows mild inflammation. The tests of the fluid drained show nothing. They did test me for TB also but it's a long shot. I'm on 40 mg of Lasix now. I still have an appt with hepatology next week but probably no new info.
I had an appt with transplant clinic this past Mon. They sent in a PA who I had never met. She was terrible. She talked to me like I knew nothing. I had been trying 20 mg of Lasix. I told her I was worried about the effects on my kidney since I knew I wasn't able to drink enough and my appetite was still bad. She said that I should then make an effort to drink. Well I have been making an effort. I had just told her about the terrible nausea. I wouldn't even know how much I was drinking if I wasn't making an effort. She pretty much said that it wasn't a transplant problem, she didn't know why they were involved, she couldn't help me. It was insulting. She still wanted me to take 40 mg of Lasix. My CBC results were back from that morning's blood draw but not creatinine yet. I told her I wanted to wait for that result before upping the Lasix. She came back in 15 min, told me the result, and gave me my check out paper. My mom knew how upset I was and told her we had questions for the nephrologist. My favorite nephrologist came in. He treated me like an adult with a brain. He said that he talked with the hepatologist, he reviewed my results. He gave me more details. He told me that with once a week blood tests we're doing that if needed we can stop the Lasix and I won't have any permanent damage. (Why couldn't the PA say that when I kept harping on damage to my transplant?) He reassured me that they are taking this seriously.
I left there feeling like I was having a nervous breakdown. This has been going on for about 4 months and they're saying they may never find the cause. It might spontaneously resolve. I am a complete wreck most of the time. I don't sleep right. I don't feel well. I'm depressed. I saw my therapist today and she helps me stay a little sane. I don't know how I end up in these situations.
-
I'm sorry you don't have any answers yet. That PA needs a good whupping!
-
Sure hope they figure things out for you soon. I once went thru nearly a year of testing and it was very frustrating and I had a lot of anxiety over it. Don't know if you are on anti-depressants at the moment but hopefully they've looked at any meds you are on/were recently on to make sure none of them are reacting to each other. Sometimes it's not something obvious.
-
POSSIBLE DIAGNOSIS! Not definite yet but we're narrowing it down. I saw the hepatologist yesterday. I do have some portal hypertension. The biopsy showed the liver has no damage or disease. During the biopsy procedure, they take blood pressure readings in the heart and in the liver. For me, there is a significant pressure difference between the two. This shows a problem. They measure the blood pressure two different ways in the liver. For me, the two readings in the liver were the same. This shows the problem is between the heart and liver. During the procedure, they tried to add more contrast and better visualize the vein but that didn't work.
This morning I had a cardiac MRI. Darn thing takes forever! About two hours and you can't sleep because you have to keep breathing and holding your breath out when they tell you to. I had to accept the contrast for this procedure. During the biopsy they used CO2 as the contrast instead of other more damaging stuff. For the MRI there are no options. You need contrast to look at the veins. I'm trying to drink a lot.
If the MRI confirms things, I have inferior vena cava stenosis. No one has any idea why I have this. At this point I don't care as long as they can help me. I probably need to have a stent put in. I asked if I would wake up dead tomorrow and the doc said no. This is slower acting. The liver has no damage yet but would over time if we don't treat the problem. I'm feeling a little relieved to know there's something to focus on. Of course if they tell me the MRI shows that's not the problem, I might have another meltdown.
-
Finally it sounds like you have an answer!
I found dialysis on Wikipedia as a possible cause.
Causes
Obstruction by deep vein thrombosis or tumors (most commonly renal cell carcinoma)
Compression through external pressure by neighbouring structures or tumors, either by significantly compressing the vein or by promoting thrombosis by causing turbulence by disturbing the blood flow. This is quite common during the third trimester of pregnancy when the uterus compresses the vein in the right side position.
Iatrogenic causes may be suspected in patients with a medical history of liver transplantion, vascular catheters, dialysis and other invasive procedures in the vicinity
Budd-Chiari syndrome
-
On the way home in the car, I mentioned to my mother that dialysis causes a lot of heart problems. She had never heard that. I would not be surprised if that's what happened.
-
I hope this is finally your answer - unless someone comes up with a better answer with less invasive treatment of course! I've always hated that stretch of time when you know something is wrong but the tests all come back normal or negative, the doctors start looking at you like you're crazy, and in your weaker moments you start to wonder if they're right!
Anyway,hope this is your answer and you feel better soonest.
-
They do some pretty amazing things these days for hearts. My mother had congestive heart failure caused by an enlarged heart. They think it may have been damaged from the "Scarletina" (mild form of Scarlet Fever) she had as little girl or...more likely, a virus in adulthood just prior to her having her first silent heart attack. They put her on several meds, including Coreg and Coumadin and water pills (to lighten the workload on the heart) and her heart actually began firming up and beating stronger. After a few years, the woman was in better shape than I was, very active and had a lot of endurance. Of course she had to take meds for the rest of her life but physically, she was amazing. Hope the docs get your heart fixed up too so that you can back to the business of living! Best wishes!
-
Any results yet from your MRI?
Love, Cas
-
Cas, not yet. I think they won't tell me until I have a follow up appt. i have to call tomorrow and check on getting that appt. the system is insane. The doctor walked me to check out and wrote on the paper to give me an appt. The check out lady looked at the schedule, said there were no appts, then said she has to send a message to the doctor to see if she should fit me in. Even though the doctor made it clear I should have an appt. That office is nuts.
-
Trying again. The MRI was really not helpful. So tomorrow I have another procedure, inferior vena cava venogram. This is done like the liver biopsy. They go in through the inner jugular and go to the inferior vena cava. This time I get a cardiac doctor in interventional radiology. He's supposed to go little bit by little bit in the vein and take pressures until he finds the problem spot. Then if he finds it he can use a balloon to open up the problem spot. This is all of course a big if he can find it. The logic makes complete sense. I'm supposed to be there about 7 hours total.
I'm in the middle of having a breakdown. I can't eat right, drink right, sleep right. It is so uncomfortable having this extra fluid. I didn't feel like this even when I did PD, although on PD I only did 1500 mL and this is more. I'm getting weekly blood tests to make sure my kidney is surviving this mess. I saw one of my favorite transplant nephrologists. He said even if the balloon is the right procedure it will take a month or more for the fluid to go away. Mentally I'm completely losing it. Physically I'm not doing very well either.
-
Sorry you are going through such a terrible time. Especially since you've already gone through the challenge of a transplant! No one should have to go through this! Hope you have someone that can help soothe you until this next procedure is complete. I've never gone what you've been through so I won't even attempt to say "I understand" but whenever I've gone through physical agony, it's helped if someone could just hold and rub my hand or my head or my neck and back, just some sort of soothing that distracts a little from the pain/suffering. Hope you have someone that can do that for you. If not, maybe try curling up with a heating pad (I use knee-socks filled with rice and heated in the microwave). Be it from human touch or a heating pad, a little "warmth" goes a long ways. Hope you keep us updated on what the cardiologist does. Sending prayers!
-
The procedure was fine from my end. Unfortunately, it didn't work. The doctor tried to put the balloon in but the pressure just compressed the vein again. The problem is too close to the liver for the balloon to work. At least that's what I understood. I have an appt tomorrow with the hepatologist. Hopefully she has an idea.
-
Oh Jeannea, I'm so sorry to hear this bl...... Horribleness
:banghead;
Don't break down now, we're all thinking of you, just not much to say that will help you.
Lots of love, and hugs and positive vibes, and good luck tomorrow, Cas
-
Latest update: The hepatologist was completely stumped. She promised to keep working on it. She said the best thing to do was schedule another paracentesis. It would give me relief and they would test the fluid again. She said she would talk to infectious disease, nephrology, and maybe others to determine the list of tests. On Mon I had the procedure. They took 4.6 liters off. I lost 8 pounds. I feel slightly better physically. I had been getting pretty big. Now I wait a few weeks to see if they find anything. A lot of the tests take time.
-
Thinking of you, stay strong, lots of love, Cas
:grouphug;
-
Hope you feel better and get some answers sooner... than later. I once went thru an entire year of testing and altho I didn't get good news, it was actually a relief to finally get some answers and then have a game plan. You will too. Bet we can guess what you want for Christmas...
-
:grouphug; :flower;
Thinking of you, Cas
-
^
-
Thanks Noahvale. I asked them about it. They say no but I can ask again. They talked about doing laparoscopy to get biopsy samples of the peritoneum. Right now they think the surgery carries too much risk with how sick I've been.
-
Hi,
Do you know what color your fluid was hat they drain off? I was having issues with bowel obstruction problems and acites and because I read something here I was able to diagnose myself and save my own life. I had my belly tapped 4 times and the last time they put the container where I could see it. I asked the nurse if that fluid comes in many colors and she said yes depending on the cause. Well, mine was pink bloody color and that confirmed my own diagnoses. I told my GI doctor what I had............Sclerosing Encapsulated Peritonitis! It was confirmed that night after they opened me up. I have also read that it is not uncommon after a liver or kidney transplant. They say that the risk factors are being on PD for more then 6 years, I was on for 4 1/2, having multi episodes of peritinitis, I had 1 infection in 4 1/2 years, being older I was 42. I didn't meet any of their "criteria" and still got it. I was in and out of the hospital 15 times for 4mths with bowel obstruction symptoms and NOBODY could diagnose me with SEP! If it weren't for the acites I would never have known. BTW....SEP normally shows up 6mths after stopping PD and a transplant doesn't make it go away. I wish you the very best of luck! One more thing....if you research SEP don't fear, it isn't a deathly as it once was. It is treatable and manageable if caught before it blocks up your intestines.
-
The fluid has been a range of colors. For one drain it was pinker. I have no bowel obstruction. Usually the opposite problem. I was on PD 2 1/2 years. I noticed the ascites a little more than 2 years after this problem. At this point anything is possible but the doctors are still leaning toward some liver damage. I'm in the middle of a second opinion process.
-
Wouldn't liver damage show up in elevated liver enzymes? I say with or without bowel obstruction symptoms you should still keep SEP in the back of your mind because of the pink fluid. I agree with you that you should have a biopsy of the peritoneal. Make sure they look for SEP if you do since NOBODY on this planet has heard of that condition. Have they check for any ovarian issues? Best of luck!
-
I've been checked for ovarian issues. They talked about a peritoneal biopsy. But in my last hospital stay, I bled after my liver biopsy and ended up back in ICU. It was pretty bad. They don't think I'm stable enough yet for that kind of surgery. Also, the active ascites makes that procedure even more dangerous. They are refusing to do the biopsy and I am in complete agreement.