Ascites

[Deanne]

Did your procedure go ok last week? Are you doing ok?

[jeannea]

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.

[jeannea]

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.

[Deanne]

I'm sorry you don't have any answers yet. That PA needs a good whupping!

[PrimeTimer]

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.

[jeannea]

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.

[Deanne]

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

[jeannea]

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.

[MaryJoe]

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.

[PrimeTimer]

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!

[cassandra]

Any results yet from your MRI?

Love, Cas

[jeannea]

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.

[jeannea]

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.

[PrimeTimer]

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!

[jeannea]

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.

[cassandra]

Oh Jeannea, I'm so sorry to hear this bl......  Horribleness

       


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

[jeannea]

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.

[cassandra]

Thinking of you, stay strong, lots of love, Cas

         

[PrimeTimer]

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... 

[cassandra]

                    



Thinking of you, Cas

[noahvale]

^





 

[jeannea]

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.

[*kana*]

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. 

[jeannea]

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.

[*kana*]

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!