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Susan
Member Username: Sambella
Post Number: 6 Registered: 05-2009
| Posted on Wednesday, May 27, 2009 - 09:52 am: |
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I'm interested in knowing what your experiences have been regarding ascites. My brother has been tapped several times, but always needs blood products first., which is not uncommon. I found that radiologists have strict criteria for PT/INR and platelet count. The last time he was tapped dry, it was at UPMC and an internal medicine doctor performed it bedside in about 90 minutes. Now we are working with another hospital and the hepatologist wants to control it with Lasix (80mg) and Aldactone (300 mg). I know both methods carry their own risks, but can anyone share their treatment and insight? It's so hard to know which way to go with this. |
panchitaruiz
Member Username: Panchitaruiz
Post Number: 25 Registered: 01-2009
| Posted on Wednesday, May 27, 2009 - 10:36 am: |
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I don't know-i'm sorry! But the best of luck with your brother!
Francesca fulminant hepatitis Liver transplant '07 UCLA |
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LSATRIO
Member Username: Lindaahern
Post Number: 7 Registered: 02-2009
| Posted on Wednesday, May 27, 2009 - 11:41 am: |
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I have never had a tap but was on Lasix and aldacton when I had fluid buildup. I had a friend who was tapped and he was told that the tap not only removes all the fluid but removed the good along with the bad stuff in it. It did what it was supposed to do by removing the fluid but he lost good stuff along with it. In my opinion I thing the drugs are a better way to go with this. PS glad to hear you went to AGH good luck with that. |
eccoblue
Member Username: Eccoblue
Post Number: 794 Registered: 05-2008
| Posted on Wednesday, May 27, 2009 - 02:37 pm: |
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My ascites began in 2003 and finally ended this January 2009. I had a total of 160 taps and over 300 gallons taken out over that time period. The average taken out was 8 liters and the most at one time was 10.2 liters. From tap #46 and afterwards I always had an anesthesiologist in attendance. The radiologists knew me so well that they didn't do labs on me each time. After my heart.liver Tx, it still took a little more than 2 more years before the ascites finally stopped. There was no reason for it post Tx, since none of the tests showed anything wrong such as portal vein stenosis, etc. It seemed more like my body just had to realize that it didn't need to produce the ascites fluid anymore. I tried all the diuretic therapies even as an inpatient. Peeing all the time became annoying. Oh, I also received albumin after each paracentesis. Anyway, if I can get through the ascites nightmare, than anybody can.
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Susan
Member Username: Sambella
Post Number: 9 Registered: 05-2009
| Posted on Wednesday, May 27, 2009 - 03:19 pm: |
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Oh my, that is incredible! You must be very strong. On the average, what was your platelet count prior to each paracentesis? Even though my brother is being seen at another hospital, I am seriously considering having UPMC tap him since they've done it before. I just wonder if this would ruffle the feathers of the new hepatologist and should I even care? Thanks so much for sharing! Susan |
eccoblue
Member Username: Eccoblue
Post Number: 795 Registered: 05-2008
| Posted on Wednesday, May 27, 2009 - 04:46 pm: |
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Susan, My average platelet count is 160, highest I ever remember having was 216 and the lowest was 130. I'm also anemic and I always have had a low white count. That's just normal for me. Kelli
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Susan
Member Username: Sambella
Post Number: 11 Registered: 05-2009
| Posted on Wednesday, May 27, 2009 - 08:45 pm: |
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Kelli, Do you mean 160,000? My brother averages about 25,000. Quite a difference! |
eccoblue
Member Username: Eccoblue
Post Number: 796 Registered: 05-2008
| Posted on Wednesday, May 27, 2009 - 09:47 pm: |
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Yes, they put it down that way on the lab reports. 160 means 160,000. 25,000 seems too low?
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Susan
Member Username: Sambella
Post Number: 13 Registered: 05-2009
| Posted on Wednesday, May 27, 2009 - 10:04 pm: |
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They've been as high as 60,000 but not for long. Yours were plenty safe for tapping. |
eccoblue
Member Username: Eccoblue
Post Number: 797 Registered: 05-2008
| Posted on Wednesday, May 27, 2009 - 11:56 pm: |
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Will they still do the paracentesis when the count is that low? Isn't the normal range between 150,000 & 400,000?
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Susan
Member Username: Sambella
Post Number: 14 Registered: 05-2009
| Posted on Thursday, May 28, 2009 - 09:22 am: |
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His platelets are always that low and he has been tapped with blood products beforehand. Even then, they are still low but if his INR is good, they do it. So far, no problems. |
Hilary
Member Username: Cowgirlhilary301
Post Number: 8 Registered: 05-2009
| Posted on Thursday, May 28, 2009 - 03:31 pm: |
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I was never tapped. I di dhave ascites prior to my second transplant and was on lasix and some other diuretic (maybe the aldactone, i want to say spironolactone??) Some long name like that...they didn't do much. My doc had offered me tapping but said it is painful and it was up to me but he would just as soon not do it if I was okay with the fluid. I remember my stomach and feet being swollen, I think I had like 30 lbs of water weight on me. Then post-tc I was on bumex for awhile for the same reason but came off it. My platelet count has always run low (usually around 100). But that's jus normal for me. it's a tough decision, best of luck!
~Hilary~ 2-time liver recipient 07.20.1996 and 03.01.2001 Dallas, TX Transplant Games Athlete, Tennis/Swimming Team Nations Capital |
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Susan
Member Username: Sambella
Post Number: 16 Registered: 05-2009
| Posted on Thursday, May 28, 2009 - 04:08 pm: |
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John (my brother) seems to have a significantly lower platelet count than some of you here. I think that makes paracentesis very risky, but like I said, he's undergone 4 or 5 and he hasn't had any complications. Susan |
Susan
Member Username: Sambella
Post Number: 18 Registered: 05-2009
| Posted on Friday, May 29, 2009 - 08:31 pm: |
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John actually GAINED a few pounds in 2 days. The doctor wants to keep him on the maxed out doses of diuretics and have blood work and weight done Monday. He is so uncomfortable. I wish he could just get tapped. |
eccoblue
Member Username: Eccoblue
Post Number: 807 Registered: 05-2008
| Posted on Friday, May 29, 2009 - 09:07 pm: |
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Susan, I don't know, in my case all the various diuretic therapies were more of an attempt to control my edema than to lessen the ascites. My legs, ankles & feet looked like balloons. The only thing that can be done for ascites, until the cause is stopped, is to get it tapped out as often as needed. There's a limit to how much tissue stretching and organ displacement the body can withstand, not to mention the discomfort. Of course, the draining has its problems too, but you have to go with the lesser of the evils. I looked up the cause of ascites a long time ago and I think there were like more than a dozen things that can cause it, especially a bad liver. It took a long, long time for my ascites to stop even with all the causes ruled out post Tx. I don't think too much diuretic therapy is beneficial. I'm curious, what medical center does your brother go to? Kelli
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Susan
Member Username: Sambella
Post Number: 19 Registered: 05-2009
| Posted on Friday, May 29, 2009 - 09:24 pm: |
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Allegheny General in Pittsburgh. We just switched from Univ. of Pgh Medical Center. |
LadyLoveliver
Member Username: Ladyloveliver
Post Number: 26 Registered: 02-2008
| Posted on Saturday, May 30, 2009 - 06:20 pm: |
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Hi Susan, I had a liver transplant in Nov, 2006. Prior to that -the docs prescribed lasix and Aldactone - which kept me stable for nearly six months- (up and down) though these drugs just helped to stabilize me- I still had six visits to the local ICU's in Encephalothopy- until I was fortunate enough to get my transplant. I had esophageal varises, and was banded several times, and was tapped for 15 liters of fluid Only one time- I carried edema all over, not only in the abdomen... I was definitely easier to try to maintain the pendulum swing- with the drug therapies...for me- I understand everyone is different. The thing that helped me alot...was controlling symptoms with my diet. I eliminated all sodium from my diet. NO fastfood, (my kids still remember this =( It really helped me maintain sodium levels and edema...I prepared smoothies and bought a book to help me combine foods that assist the liver to function and heal. I drank, and still drink alot of Green Tea, iced or hot. I hope you get the answers that will help you find what works for you. All my best! Colette |
LadyLoveliver
Member Username: Ladyloveliver
Post Number: 27 Registered: 02-2008
| Posted on Saturday, May 30, 2009 - 06:25 pm: |
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By the way...I was in Pittsburgh last summer with the US transplant games...and heard Dr. Stals... (something/Name I cannot remember) from UPMC speak. I believe he is literally the grandfather of transplant! So UPMC is truly the place to get great care, from what I have seen and heard. I also had great care at Northwestern in Chicago =) It sounds like you have great medical availability/access in Pittsburgh! |
Susan
Member Username: Sambella
Post Number: 21 Registered: 05-2009
| Posted on Sunday, May 31, 2009 - 10:53 pm: |
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Thanks Colette for sharing your info. It's very helpful. Susan |
Linda M
Member Username: Petrifiedorgan
Post Number: 668 Registered: 06-2006
| Posted on Monday, June 01, 2009 - 04:05 am: |
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Hi Susan, as Keli stated, sometimes drug therapy is not the way to go, but in many cases in can really be helpfull. It depends on how often your brother is needing too be tapped. He may have resistant Ascites. Diet is soooooooo important in ESLD, watching sodium intake and eating small frequent meals can make a big difference. Protien intake is also very important as the right kind and right amount can help keep the Albumin levels more where they should be. Albumin keeps the fluids where they belong. Nuts, grains, eggs, chicken, fish, peanut butter etc are good souces of protien. Animal protiens are harder for the sick liver to digest, especilally red meat. Eating no canned, preserved foods, things out of jars. lunchmeats, etc, will really help to keep the sodium levels down. Under about 1500 mg daily is good, intake of at least 75gms of protien daily. You should ask your MD or a nutritionist to figure out your brothers BMI (body mass index) and then determine what he needs as far as calories, sodium and protien. Tapping can rob you of some of the good stuff too, but they can give transfusions of red blood cells, albumin and other things if your brother gets into trouble. My platelets have been at between 30 to 50 for the last 7 years. As long as his Hematocrit and Hemaglobin are OK as well as his RBC count, he should still be OK. Platelets help with clotting, while the RBC's carry oxygen to our cells. Lasix and aldactone together may be very helpful if you also follow a low sodium diet. Lasix is potassium sparing which means when you pee, you lose potassium. Aldactone is . non potassium sparing, so the drugs given together can sometimes help keep potassium levels where they should be. It is always best though to keep track and see if added potassium is needed or not. If taking diruretics and your brother is not on a fluid restriction, then it is good to stay well hydrated. This can help the kidneys. BUN and Creatinine should also be watched along with electrolytes, when on diuretics. I hope this helps a little Peace Linda M
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Linda M
Member Username: Petrifiedorgan
Post Number: 669 Registered: 06-2006
| Posted on Monday, June 01, 2009 - 04:17 am: |
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Hi Again Susan, Just wanted to correct something. My brain gets alittle foggy some times LOL. Lasix is non sparing and Aldactone in potassium sparing. Thats it for now. Linda M
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Susan
Member Username: Sambella
Post Number: 23 Registered: 05-2009
| Posted on Monday, June 01, 2009 - 10:18 pm: |
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Thanks Linda for the info and tips! |
ono
Member Username: Ono
Post Number: 1 Registered: 06-2009
| Posted on Saturday, June 27, 2009 - 11:16 am: |
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I too used lasix and aldactone and was never tapped. I was able to keep the ascites under control until my cirrhosis got really bad, by strictly limiting my salt intake. Another good source for albumin is white tofu and soy milk. I ate the whites of eggs only avoiding the fat ty yolks. Now I've had a liver transplant and can happily eat most anything |