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Ascites...what to do

tc_sis
Posts: 22
Joined: Feb 2011

I have again searched the boards and have seen where many people have been "tapped" to remove the fluid from ascites. We are wondering which of the docs would be the one to do this? It has been mentioned to us before when we had hospice. We are kind of on our own right now. My brothers reluctance to take the hospice referral upon leaving the hospital this past Monday until he could speak with his medical Onc. has left more questions than answers. He is so not ready to give up and is in denial, to a point, that they have done all that can be done. He is suffering miserably with the extra pressure the ascites produces. Here we sit on Saturday morning... and now he is growing increasingly anxious about the swelling!

Do we call the Onc. the Gastro doc or the Hepatologist?

Thanks,
Tc_sis

Pennymac02's picture
Pennymac02
Posts: 336
Joined: Aug 2010

Either one can do it. My husbands first tap was right in the emergency room. They got 6 liters the first time.And have him eat lots of hard boiled egg whites after. In salads or whatever. They are loaded with albumin, and that helps keep the fluid from building up as much.
Penny

imjb73
Posts: 34
Joined: Jan 2011

Pennymac02,
I had seen the thing about the eggs on another post awhile back. Before we had any problems with the fluid. I was just wondering about the low sodium restriction when eating the eggs? I know 65mg each doesn't sound like much but 4 or 6 will add up when you are only allowed 2000 mg or less. Hubby is reading labels now and getting gun shy with sodium counts. He has only had to be drained once and hope it won't happen again in the near future. His albumin is low and he is anemic.
Thanks for any advice you can share.
Joyce

Pennymac02's picture
Pennymac02
Posts: 336
Joined: Aug 2010

Not sure on the sodium count on just the whites alone. I got this advice from the ARNP who is THE expert on liver transplants for the VA in Richmond. She coordinated everything from inpatient hospitalizations, appointments, did the tapping procedures, and qualified donors and recipients for the transplant program. My husband was on fluid restriction and sodium restriction and she still made this suggestion. I'd talk to the doctors about it, though. My husband made the transplant list, but the donor liver didn't come in time. He passed on January 14; 6 months after diagnosis.
Penny

imjb73
Posts: 34
Joined: Jan 2011

Penny,
I'm so sorry for your loss. I just don't understand how things can turn so fast.
He is not quite at 6 months after diagnosis. It has taken from September until now for him to get on the list after 2 Y90 treatments. Seems like everything is going down hill very fast. We weren't told until the end September about his HCC but found out even later that it showed on the very first tests in June. Thank you so much for your help and I will ask the doctors about the eggs.

Joyce

imjb73
Posts: 34
Joined: Jan 2011

I asked the doctor about eating eggs to help with the albumin level and he said no. Not to get too much protein because it can make the encephalopathy worse. His suggestion was one meal a day and 2 boost/ensure just try to keep a balanced diet.. He doesn't have much of an appetite and nothing tastes good to him.

Joyce

Angel322
Posts: 26
Joined: Mar 2011

Tc_sis,

Contact your brothers Oncologist right away. He can get this set-up for you immediately. There will be Physician's Assistant on his team that can do the procedure. My Mom had to have this procedure done a few times so I know firsthand what you are going through. Luckily, my Moms fluid wasn't too bad but enough. The PA will usually do it in the chemo dept or another part of the hospital that is available, such as a private patient room where they see patients for check-ups after scans etc. They will place him in a bed with a privacy curtain and the PA will do the procedure there. It doesn't take very long. Having that fluid drained will help make him feel a lot better. I'm not sure what type of cancer your brother has but my Mom had a biliary drain and CVDL could tap her when they were changing out her drain, also. Its a fairly simple procedure. They will let a family member stay with him while they are draining the fluid. Please call his oncologist, he is there to help your brother as much as he can. Call his service over the weekend and he can get back to you or the doctor on call. They can get this set-up for as early as Monday, I hope. Depending on the hospital and where you live. All I had to do was make a call at Johns Hopkins to my Moms Oncologist and I got it set-up right away. Do everything you can to help him and make him comfortable, he needs your love and support now more than ever.

Denial is normal. Its the only way to cope sometimes. When I learned of my Mother having Bile Duct Cancer, I fell apart. She went from the strongest person ever to having this terminal disease. I took care of her and helped her fight as long as she could for 2.5yrs. She was never sick in her 67years, never one to sit back quietly, but being told you have 6-12months to live are the worst words a patient and family can ever hear and she was in shock. She was so sad, she couldn't speak at times about it. So, allow your brother to deal with it in his own way. I feel for your brother and you and what your family is going through. My Mother died in my arms on Father's day, June 20, 2010. Letting her go and living without my best friend each day has left me devastated. Please know you are not alone.
With love and strength to you and your brother and whole family, Angel

tc_sis
Posts: 22
Joined: Feb 2011

Thankyou all for your replies...I contacted the palliative care group yesterday afternoon. We were advised to take him to the ER,for the quickest relief. They began by administering IV diuretics, which produced little effect. The diuretic was increased and he was able to pass several liters of fluid...but not enough. Today they went ahead with the tap and relieved another few liters, but he is still very swollen from his belly to his feet. There is so much going on with him right now and all at once it seems. He is stage 4 liver with spinal mets and previously had Hospice in the home,which he chose to terminate to persue chemo. At this point, because of bleeding issues he will no longer be able to take the chemo and has been urged to return to hospice. The palliative care team stressed that had hospice been in place he would have been able to avoid the ER visit and received the treatment at home , or at the worst would have been admitted to the inpatient hospice facility by direct admit and not had the long ER wait.

He appears to be somewhat more comfortable this evening, but still having problems urinating. They are looking closer to see if there may be an obstruction or early renal problems. He is so afraid, only 52 years old and until his diagnosis in september he was relatively healthy.

thank you all so much for your suggestions and concern. It is really wonderful to hear from those of you who truly understand from a place of experience.

TC_sis

mrsbotch
Posts: 377
Joined: Oct 2010

My husband had esophageal cancer and it spread and had terrible ascites. He would go to the hospital and the radiologist would be the one to drain him.My husband suffered terribly.

I hope hospice will allow him to get tapped.

barb

mhrosado
Posts: 37
Joined: Jan 2011

Hello Angel. first, I am so sorry that you lost your mother. Your post reminded me of a book I read for a child development class a long time ago. I still have the book.

I love you forever
I'll like you for always
As long as I'm living my baby you'll be... the story goes that the mother put up with the big boys mischief, at night she would rock him to sleep and sing that song. and the big boy grew to be a man the mother kept singing to him but one day the mother was too sick to sing and the boy (who was a man now) picked up the mother, sat with her on the rocking chair and sang to her

I'll love you forever
I'll like for always
As long as I'm living my Mommy you'll be...

mhrosado
Posts: 37
Joined: Jan 2011

Different doctors have different views. My husband's primary doctor said go get the fluid removed at the emergency room. Ed had fluid removed 4 times and the last 2 times the fluid returned about a week after he was tapped. oncologist said be careful because there is a danger of infection and that can definitely complicate things. The new Liver doctor that we saw this month, a professor at UCSF said "NO" do not do this anymore and he gave ed medications to help him get rid of the fluid (pee it out). and, said no salt at cooking and no adding salt to food. Ed is feeling better but today we requested to have the meds increased because fluid is accumulating again. the doctor increased the dosage and will keep a close eye on the kidney functions.

Your comment that your brother is not ready to give up says a lot to me. We were told that there was not too much that they could do for my husband and referred him to hospice. we did not accept hospice, read about nutrition, eliminated meat and many of the processed foods from our diets and went to get a second opinion. Ed was diagnosed in January of 2010 and given 6 months at the most.

I wish your brother and you many many good days. Keep up the hope and pray for him. I will pray for you both. take care
read our story at

strongandconfident-maria.blogspot.com

tc_sis
Posts: 22
Joined: Feb 2011

Thank you so much, for sharing your experiences here and through your blog. As much as I hate to know that others are dealing with this, it is so helpful to share experience and compare notes, so to speak. Our doctors were very conservative with the removal of the fluids also,first attempting removal through the use of IV lasix. When that proved ineffective, they proceeded with caution to paracentisis. Once they had removed a few liters, they were satisfied as they explained that removing all of it could create problems as well. They immediately gave him albumin, potassium and magnesium IV... to replace what was removed via the ascitic fluid. To every symptom or treatment there seems to be another set of risk. We were warned of the possibility of infection and bleeding also. We are still battling constant ascites and edema... some days are better than others.

My brother also recently has several bleeding varices banded, and was given a couple of pints of blood to replace part of what he had lost. It was explained to us that replacing all of the volume would increase the pressure and lead to recurrent or faster bleeding.At that time he was told by the doc that she would not resusitate him in the future if he began to bleed.We were shocked and could not understand what she was saying. After questioning and research we understood that by that she was refering to continuing giving him blood as he lost it. There are just so many things about all of this that are so hard to wrap your head around. The doctors are so insistant that he bring hospice in again, but he is so reluctant to give in to that.

I know devastating this all is, as his sister,but I can not begin to imagine how he feels. It breaks my heart to see him going through this.

Thanks again,
tc_sis

agt_dht
Posts: 15
Joined: Feb 2011

My husband first developed ascites at the end of July, and I wondered if you could tell us what the medications are that Ed's doctor prescribed to help him get rid of the fluid. We have been on hospice care since the end of March, and I haven't heard of any medication that will address the ascites. My husband has swollen feet and ankles as well and will be taking a small dose of Lasik (the diuretic) to see if that has an effect.

My husband's primary liver cancer was diagnosed in May of 2010. He was in a clinical trial of Nexavar plus erlotinib/placebo through California Pacific Medical Center in San Francisco until February of this year, when a CT scan showed what looked like an additional tumor in another lobe of his liver. He had been pretty strong and well overall until the end of last month, when the fatigue and development of ascites seemed to indicate the healthy parts of his liver were no longer compensating for the tumor.

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