March 12, 2009 at 8:33 pm #27134jeffgMember
Barbara… Fluid retention is an inherited problem of this disease. Although some patients are not affected as much as other and some not at all. As I read through the last few post, I have to agree completely with what I am hearing. Basically the more you have it done the more risk your putting yourself at. When it comes to the feet and legs, your looking at a progressive situation of pittted retention without cavity space to properly drain anything. If you take your finger and apply pressure and watch it fill as you let go, I would consider pitted. Now, I have had 3 drains done between my lungs and chest cavity about 4 months ago and it stayed away. Now it is in my feet and lower legs. Lasix and elevation of feet is about all that helps to any degree. I just have to accept the fact this is progressive of the disease and maybe it’ll stop or not. There are other diuretics and you can go up on dosage if the doctor is willing, but in my opinion your putting your kidneys and heart at great risk. Maybe trying oxygen to help with circulation. But then what? Are you going to circulate too? Is there a chance of filling another cavity that you don’t want to do. There is a company in N.C. that claims to have a spray under the tongue solution to relieve fluid retention of feet and lower legs but, But I wonder what lurks behind this unknown. Hopice is there to make us patients as comfortable as possible due to circumstance beyound our control. So far I have had extreme satisfaction. Sometimes there is only so much that can be done. No, I’m not saying don’t advocate for your Dad, by all means if there is something that can be done, love rules. However, if increase danger is the option, I would say enough and elevate the feet and keep an eye on the potassium levels. Barbara, I’m sorry your Dad is having such an uncomfortatble time with his feet. I pray that he gets relief some way, some how. I did while having my drains done take an anti-inflammatory 800mgs of Ibprofen 3 times a day. Did it help ? I don’t know.
Jeff G.March 12, 2009 at 8:32 pm #27133BazelParticipant
What a sage reminder for all, “what is good for some may not be good for all”. It is nice to know that folks can come to this site and gather a variety of opinions and actual experiences and use this as a tool to have more informed conversations with their own health care providers.
BzMarch 12, 2009 at 6:31 pm #27132marionsModerator
Of what I have learned, some physicians will not recommend the draining of ascities due to the extreme loss of potassium (amongst other reasons) and, as you have mentioned, it will return. Then, on the other hand, on this board, we have seen plenty of positive responses. Again, it seems to be the right thing for some and not so good for others.March 12, 2009 at 10:23 am #27131magicParticipant
Hi I dont think theres a simple answer to the ascites problem because draining the fluid doesnt fix it.It can cause other problems and sometimes the fluid can come back so quickly you have to weigh up the stress of the hospital visit etc.If it can be done at home this can be easier but less successful with pockets.What most people find though is that the fluid builds up quicker after each subsequent tap so its important to be on diuretics to slow it up a bit. JanetMarch 11, 2009 at 1:09 pm #27130cherbourgParticipant
My mom too has a huge belly but the fluid in her belly is what the doctors call “loculated” meaning it is in pockets. We were able to drain two of them but the rest is not able to be tapped. When the fluid is loculated it can be dangerous because you might hit bowel and cause more problems. After being with her during the procedure and seeing the ultrasound (we did the second tap under ultrasound guidance) her fluid seemed to be walled off by carcinomatosis (numerous small tumors).
They have increased my Mom’s lasix which has helped some and they have added potassium to her meds since diuretics can “wash” the potassium out of your system and cause heart issues.
Have a frank talk with your Dad’s physicians and see what else they may have to offer.
This is so hard to watch. My mom looks 9 months pregnant and it’s uncomfortable for her to sit up and also makes her a major fall risk when standing or walking.
You and your family are in my thoughts and prayers. This is such a hard thing to deal with….
PamMarch 11, 2009 at 6:06 am #27129rortmannsMember
My partner is getting taps ever more frequently. Its down to every 9 days or so now and the amount is up to 9L , she only weighs 42Kg after the tap.
What actually happens if you dont get tapped – does it stop accumulating?
RalfMarch 11, 2009 at 4:02 am #27128roma35Member
Thank you so much everyone. I am calling the Hospice Dr tomorrow and telling him just that. Even if the fluid is in “pockets” in my dads case, any fluid they can get out of him will be a relief. After the hundreds of trips we have made to the hospital, what is another few trips to get relief? This way, maybe he doesn’t have to spend the rest of his life laying down, maybe he can actually sit up for a bit. (ah, the little things in life people take for granted!) I am not taking “no” for an answer.
BarbaraMarch 11, 2009 at 3:33 am #27127sophieMember
Hello Barbara, I had (I think about 6) another paracentesis (drainage) today. They took 8.2 liters which totaled 20 pounds. When I came home from the hospital I was 20 pounds lighter. It comes back very fast. I am getting drained now about every 2 weeks. It started out at 3 liters, then 3-1/2, then 5-1/2, then 6-1/2 and now 8.2. It offers relief, but the others are right about it coming back fast and more. I also have tried some drugs like lasix and spiralactone (sp.) They made me really nauseous. I feel really bad for your dad because I know what he’s going through. With an ultrasound guided paracentesis, surely the radiologist can find a little fluid to drain to help your dad. You might check again, but like Joyce says every individual is different.
All the best to your dad and family,
SophieMarch 11, 2009 at 2:15 am #27126jmoneypennyMember
So sorry your dad is so uncomfortable. As others have said, I would get another opinion about getting the ascites drained. My mother had the pregnant belly, too, and they never drained her or even suggested it – I guess I didn’t know this site well enough to ask all the right questions. She developed shortness of breath from her enlarged abdomen pushing on her lungs, and it was very scary for her. They did give her Lasix, a water pill, to help her get rid of some of the fluid, and that gave her some relief.
After that, she went into hospice care and they never mentioned drainage, either. By then the swelling moved more to her ankles, knees and thighs, and eventually was leaking out of her pores – a sign of the end, I was told. But don’t be alarmed – there are people on this site who have lived with ascites, had them drained several times over a period of YEARS and they’re stilll around to talk about it! It’s very individual, as is everything with this horrible disease.
Here’s hoping your dad (and you) find some relief and comfort.
Thinking of you,
Joyce MMarch 10, 2009 at 5:17 pm #27125marionsModerator
Barbara….so sorry to hear about your Dad’s ascities. On this board we have had many discussions about this common problem. I assume that your Dad is receiving diuretics for comfort of this symptom.
My heart is with you,
MarionMarch 10, 2009 at 4:55 pm #27124BazelParticipant
My father also had recurring ascites build up. While yes it comes backMarch 10, 2009 at 4:01 pm #27123devoncatParticipant
Try searching the site, I am sure there have been several suggestions as to what to do. Our site’s lovely Sophie is waiting for insurance to approve a drug that helps with this (I think I am remembering that right). Hopefully you can find it in a search or someone in the know will be here soon.
KrisMarch 10, 2009 at 9:36 am #27122brookerpParticipant
Barbara – my Daddy had his first paracentesis done the first week of December. His belly was very extended, he could only lay flat and breathe comfortably and it was if it happenend over night! When he sat up to eat, the food/drink would come right back up. They did an ultra sound to determine where the fluid was….draining does work – it gives RELIEF – however, it did come back very rapidly – after the first tap they took out 11.5 liters of fluid, 3 weeks later he had another tap and they took off 9 liters….but that didn’t matter how quickly it came back, it gave him some relief where he could breathe more comfortably and was able to sit up and eat/drink. I would ask for another opinion, if they are unable to perform a paracentesis/tap, I think they could give him some type of pill to help with the fluid……I am not sure on this, but I think I remember them talking with my Daddy about that.
I hope this info helps, these were the circumstances with my Daddy – the fluid did come back more rapidly, BUT it offered relief, even if temporary, at the time.
Hang in there!
Smiles through tears,
PatsyMarch 10, 2009 at 5:04 am #2087roma35Member
Is anyone familiar with ascities(sp?) What seemed to be slight swelling in my dads abdomen 2 weeks ago has grown and he looks 9 months pregnant. Every morning I stop into see him, and his belly looks bigger then the day before. I spoke the Hospice Dr. and he said in my dads case he couldn’t drain it b/c my dad has pockets of tumors in the abdominal region and it would be impossible to drain. He also said draining usually doesnt work. The fluid comes back mroe rapidly than usual and more. The question is, how much bigger can he get, at this rate it seems eventually it will affect his breating because the swelling is going to push into his diaphram. The swelling is making it impossible for him to even sit, he has to lay in bed all day.
Any info would be oh so helpful
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