Topic: Ascities getting out of control

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
Thank you
Barbara

The  Lord is my shephard

Re: Ascities getting out of control

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,
Patsy

Re: Ascities getting out of control

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.\

\Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Ascities getting out of control

My father also had recurring ascites build up. While yes it comes back

Re: Ascities getting out of control

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,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Ascities getting out of control

Hi Barbara,
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 M

Re: Ascities getting out of control

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,
Sophie

Re: Ascities getting out of control

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.
Thanks gang
Peace
Barbara

The  Lord is my shephard

Re: Ascities getting out of control

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?

Regards

Ralf

Re: Ascities getting out of control

Barbara,

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....

Hugs,
Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Ascities getting out of control

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.               Janet

Re: Ascities getting out of control

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.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Ascities getting out of control

Marions,

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.

Bz

14 (edited by JeffG Thu, 12 Mar 2009 15:19:19)

Re: Ascities getting out of control

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.

Take it to the Limit,One More Time! (Eagles)

Re: Ascities getting out of control

Thanks everyone for chiming in.  I did meet with the the Hospice nurse today, and she said if we really want the procedure, the Hospice Dr. will write an order.  However, we have to drive down to the hospital in Chicago, which is no big deal- 20 minutes from where we live, but if the surgeon approves the procedure, my dad has to stay over night.  We were trying to avoid anymore hospital stays.  It would be next Tuesday, so we have a bit of time to discuss, and make a decision.  It will probably depend how the weekend goes.  Yesterday was a good day, my dad was alert and up most of the day, even came downstairs for dinner and had some soup, but today he didnt get out of bed, and slept most of the day.  I still believe if the  procedure can give him a week or 10 days of relief, it will be worth it, but if the fluid comes back immediately and more, and we have to come back, it will be a nightmare.  I guess we wouldn't  know until we do the procedure what the outcome will be.  My mom looks to me for the guidence, and it is sometimes really tough to be the one making these decisions......
Peace
Barbara

The  Lord is my shephard

Re: Ascities getting out of control

Hi Kid. I know it seems like  you are making incorrect and strange decisions but in fact you have done so well! Sometimes you just have to go with your gut decision. With the way you have handled everything and with your heart just breaking, I have known no one who  could have done better. You have been amazing...

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Ascities getting out of control

Barbara,
I cant imagine what it must be like making decisions for someone else...I have enough of a problem making them for myself. You are doing everything right and there is no perfect answer so you have to do what you think is best at the time. There is no good path to follow, only the one we cut for ourselves and it isnt always the best, but the best one we good find at the moment.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Ascities getting out of control

Thanks Lainy and Kris for the vote of confidence.  I am doing the best I can I guess.  I may never know if some of the decisions I made were the right ones, but I do know I made them with my dads absolute best interest in mind, even if it was with a heavy heart.
Peace
Barbara

The  Lord is my shephard

Re: Ascities getting out of control

Barbara I wonder why he has to stay overnight,I would have thought a few  hours observation would be sufficient.Is it being done in a Radiology department or in a ward situation?
                                                        Janet

Re: Ascities getting out of control

Hello everyone,
I am pleased to report the tapping of my dads abdomen was successfully done yesterday.  It wasn't an easy process and I was beginning to regret my decision,  but now I am thinking it was worth it.  We decided to have an ambulance take him to the hospital and we follow in a car b/c of concern along the way for bumps and general uncomfortableness b/c the pain has gotten really intollerable.  It was a sad site, my brother came over with his kids as the paramedics were loading my dad, and my brothers 2 year old started to cry for grandpa, and that made my dad cry.  The Hospice dr. was an Italian, and he spoke Italian to my dad, which made my dad smile.  He took my mom and me in the hall and told us everything with the bark off- CC is vey aggressive, the tumors are in the internal organs, the acites is coming from the organs not functioning properly anymore.  The liver is shutting down, and that is producing toxins in he body which is what is making him so fatigued, it will eventually go to the brain and to the lungs.  He said "no one knows when, but this is what will happen" The words were the harshest I have  heard, but he said it with such kindness, and sympathy...Then he asked, "what do you want for Roberto?" we said "a bit more comfort at the end of his journey"  "perhaps to sit up in bed, possibly walk outside and look at his yard, just a few simple acts that will mean the world to him and us."  So the Dr. said, "ok, the fluid in him is in pockets, so it will be a bit more difficult, but we are going to get some out" and they did.  Yesterday they took out 6 liters.  He came back to the room and said, he allready felt a weight lifted.  He had some soup and ate a cup at normal spead and grapes, and he actually wanted them, he really wanted a glass of red wine, but he will have a glass tonight at home.  I am picking him up from hospital this am, and I don't know how long we have- weeks or maybe just days, but we are going to make the most of the time.  I treat every moment, every conversation, every smile, as a gift now with my dad.  It is no longer about quantity, but quality. 
Today WILL be a good day.
Peace
Barbara










Peace all
Barbara

The  Lord is my shephard

Re: Ascities getting out of control

My partner has severe ascites and gets drained every 7-9 days at the moment, typically they take 7.5L from her tiny body - she only weighs 48Kg with 7.5L of fluid in her.

In her case the ascites is caused by cancer cells on her stomach lining.  Apparently we produce this fluid in small amounts to allow the internal organs to move freely about - slide over one another.  In the case of cancer cells that are on the stomach lining this irritation causes the body to respond as though more fluid is required, hence more is produced.  Normally more fluid would ease any irritation caused by the lack of fluid but in the case of cancer the irritation continues as does the fluid production.

The worst thing is that once the fluid is removed it seems to build up relatively quickly.  Fiona was only kept in hospital once, the first time a large amount was taken - this caused her to have severe referred pain in her shoulder caused by relief of pressure from the ascites on the diaphram.  They kept her in to ease the pain. Since that time it has been a relatively simple procedure but gives her much relief.

Re: Ascities getting out of control

Barbara,

My thoughts & prayers are with you & your family. Know that we are all here for you.

Love & Hugs,

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

23 (edited by JeffG Thu, 19 Mar 2009 05:18:18)

Re: Ascities getting out of control

Janet,  I had both done done in the ward and CT guided.  Basically I was told that with CT you can immediately see if there is any damage as far as punctured lungs, even if a pin hole and can be taken care of immediately.  On the ward it is is usually done with sonogrham and the stay is for the same reason,  to be precautious.  They normally use a portable xray machine after so many hours then one more before discharge to ensure all is well.  There is just so much that can be poked or perferated, they want to make sure.  I am happy Barbara's Dad was able to get fluid drained and I pray it stays away.  Barbara, I sure hope your Dad's drainining is for an extended period or stays drained.  Did the Doctor mention anything about taking Ibprofen to help keep the inflammationation down?  I know it helped big time on me.  Bless you Girl, your one loving daughter!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Ascities getting out of control

Barbara - I am so glad your dad was able to get some relief!!!  Hang in there girl and take in every moment!!! I am so proud of you and I know your dad is too!!  Know that we are thinking of you during this time!!! 

Lots of love your way!!

Smiles through tears,
Patsy

Re: Ascities getting out of control

Morning Barbara. You made your decision out of love and your Dad received relief...  He's so lucky to have you, and I hope you both enjoy that taste of sweet wine together this evening!  It's wonderful news that he 'wanted' to eat, the small miracles of a day to be grateful for. 

Sending many hugs....
Tess