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Posted 2/27/2012 2:49 PM (GMT -7)
Hi Everyone:

Well my boyfriend Oscar was in the hospital for 4 days. He went to get a chest xray and ultrasound of abdomen because he had been coughing for about 2 weeks and they noticed fluid in the lung cavity. Well they did the thoracentesis on Thursday evening and again on Saturday. I'm not sure how much they drained on Thursday but on Saturday it was 2.5 liters and they also removed fluid from his abdomen. I don't know if I mentioned he has cirrohsis and is being referred for a liver transplant but they have not even called him for an appt or interview on that. I know its a process so I have no clue how long that will take. Honestly I am very concerned about the fluid in the lung cavity and how fast it came back. Does anyone have any feedback on this? His doctor is concerned also because he said if fluid got in his lungs he did not think his body could fight that. It's frustrating because I have no clue as to what to do to prevent it from happening or at least prolonging it. Any feedback will be appreciated.

Posted 2/27/2012 3:03 PM (GMT -7)
Hi, Moniesol. I'm sorry your b.f. has been in the hospital. There is nothing you can really do about the fluid. A low or no-salt diet will go a long way in keeping him from retaining fluid. It sounds like the abdominal fluid found its way into his chest cavity. Is he on any diuretics?

Who referred him for transplant? That's who you should check with about a date when the evaluation process will begin.

Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL
Posted 2/27/2012 3:42 PM (GMT -7)
The dr he sees now is a GI he has been very nice and referred him to UCSD transplant center, we live in San Diego, CA. He is on aldactone, lasix, lactulose and a few others, but i think those are the main ones. He raised the dosage on both the aldactone and the lasix, but last time he raised the lasix his kidneys did not take well to the change. It is so hard I work full time and he is home alone all day and he is getting weaker. While he was in the hospital they did not give him his lactulose for 2 days! He was very lethargic and just kept repeating himself. His hands started trembling really bad and then the nurse told me they were going to check his ammonia levels and if they were high they would give him lactulose. I told her he takes that at least twice a day, she said there is no record of it...she looked and of course there was!!
Posted 2/27/2012 4:49 PM (GMT -7)
You need to follow up on the transplant referral. See if it's actually been done. Is there anyone else who can help him out or stay with him part of the day...or even just check on him once in awhile? When and if he does go for his transplant evaluation, you will need to be with him for all his appointments, especially if his memory isn't too good or he is weak.

This disease is hard on both the patient and the caregiver.

Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL
Posted 2/27/2012 5:23 PM (GMT -7)
They did call him from UCSD and took his information and said they would be calling him back for an appointment. Well my older daughter helps me out alot, she helps with doctor appts and such. He also has a daughter and I just had a serious chat with her in regards to me needing help. I request time at work for his appt but come on! Believe it or not he had 13 brothers and sisters and maybe a couple call him to see how he is, but no one volunteers help. Its crazy, but hey thats another issue!

In regards to it being hard on both of us, believe me I am hanging in there.

Posted 2/27/2012 7:49 PM (GMT -7)
Moniesol, I'm glad that he got a call from the transplant center! As for his relatives, ASK them for help if you need it. Be very specific. Sometimes people don't know that help is needed or exactly what to do unless asked specifically. You be sure to take time for yourself, too.

Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL
Posted 2/29/2012 10:45 PM (GMT -7)
Hello Everyone

I did not know whether to start a new subject or continue here. I'm still kinda new at this. But today Oscar went to see his doctor and told him it seems the fluid is back in his right lung cavity and would more than likely need to be drained again. He said this was a big set back, he has recommended TIPS but I am not too familiar with it. Any input if this is a good step. He was drained from the lungs twice last week and he also had fluid drained from the abdomen.
He is in bed most of the time but he does get up to go to the bathroom but he is very weak. He is still waiting for an appt at the transplant center but who knows how long that could take. I know he is worried since the doc told him some patients do not survive the TIPS procedure and that his encephalopathy might get worse. But honestly I do not see many more options. Any opinions?
Posted 3/1/2012 2:17 AM (GMT -7)
My Mike went through the TIPs operation and for him it was quite successful.. to him from the brink of death to a few years of a lot better quality of life.. it was liver cancer and complications that took is life two years ago.. Sandia
There is no pit so deep that He is not deeper still... Corrie Ten Boom
Posted 3/1/2012 7:46 AM (GMT -7)
Moniesol,

I had the tips procedure done last February. I did not have ascites, but rather a blood clot in my portal vein which had compromised the vein. My doctor told me that the tips procedure was a bridge for me until my eventual transplant.

My tips was complicated by my Portal Hypertension and a unique vein architecture in the liver. I was hospitalized for 2 days following the procedure to make sure the shunt was working properly, and I was not bleeding.

Interestingly, my HE has gotten less severe since my tips. I know this is not the norm. I have felt the best I have in years since having the procedure. Sure, it carried some risk, but my cirrhosis carries risk as well.

Susie
Cryptogenic Giant Cell Hepatitis
Cirrhosis and ESLD
Meld 14
Posted 3/1/2012 9:05 AM (GMT -7)
Thank you for your responses. Have any of you had to have draining from the lung cavity? I think the dr is worried it might go into the lung. So of course I'm worried and keeping an eye on his temperature making sure he does not start runnning a fever. He seems depressed and how can I blame him. He says whenever he thinks he is feeling a little better they give him bad news. We got the report on his CT scan but off the top of my head I don't remember exactly what it said only that it had a small cysts and his spleen is enlarged approximately 15cm and something about his portal vein. I'm at work right now and do not have it with me.
Posted 3/1/2012 9:41 AM (GMT -7)
Moniesol, it was probably portal hypertension, which causes fluid problems.

I seem to remember one member whose hubby had fluid drained from a lung. This procedure carries the risk of a collapsed lung, but if the fluid remains it could also cause problems.

Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL
Posted 3/1/2012 11:38 AM (GMT -7)
Hello Moniesol and welcome. I am a former caregiver.........so please listen to me. .......don't be stubborn like I was and not ask his family for help. Like you I felt they should have offered.....not until my husband's last 36 hours on earth did I get an offer from any of them. Now I could kick myself for being so stubborn. I actually could have died while I was trying to work and take care of him alone.......had a condition that could have killed me. I was extremely lucky that my immune system fought it off. I was so busy fighting for him that my own health took a back seat.

I sure hope that they get his ascites under control soon........for both your sakes..........lot's of thoughts and prayers.......
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I manage get there anyways.
Posted 3/1/2012 11:44 AM (GMT -7)
Moniesol, A. Ziffle, who posts here, also had the TIPS and it worked very well for him. No after effects.

Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL
Posted 3/1/2012 12:42 PM (GMT -7)
Yes Connie I believe it was portal hypertension there is so many things I am learning as this disease continues! It is overwhelming and it's very hard to keep composure although it seems that every night I cry myself to sleep and all he can do is rub my back!

Grandma I hear what you say but I think I am so hurt by there way of coping with his brothers disease. Honestly I do not know how long it will be before I actually break down. I only cry at night and do not really talk to anyone about my feelings but him. And I try to watch what i say. I don't want it to seem like I resent him. I dont its just hard.

Posted 3/1/2012 1:53 PM (GMT -7)
Moniesol, I know it's hard. I think caregivers have it worse than patients. You might want to see a counselor, to deal with your feelings. It's not good to keep things inside, but it's not the best idea to be burdening Oscar with them, either. That will make him feel guilty for putting you through this and question whether you will stay the course.

It's a long, rough road ahead with ups and downs.

You can also vent and get support on the Caregivers thread.

Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL
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