Re: Lung full of fluid

Daniellemarg- one more thing... what you said about your husband's attitude and being humbled.  I feel the exact same way.  I was looking at my dad today in his wheelchair- he doesn't even have the strength to hold up his head most times when he is in it- and when he catches me looking at him he smiles.  Doesn't give a rueful shake of his head or a sad face, but smiles.  He can't walk, he can't eat, he has to worry about losing control of his bodily functions at times and he still has not complained ONCE.

I can only hope that I have inherited some of his dignity and grace.

Re: Lung full of fluid

Dear friends,
Thanks so much for the response - yes, he is breathing more easily, no longer is intubated and is only on oxygen. he is still on levafed (not good) but the dose is decreasing (v. good). Deb, the ecg came back ok and the cardiologist is "not concerned" - jim doesn't have ecocarditis (sp.?) but his heart function has decreased as his heart was damaged during the ordeal. he's just gone in for another procedure, the hole where his gallbladder used to be and one of the liver spots (absess? infection?) is filled with fluid.

We're staying hopeful.

Lisa, don't be scared. everyone is different and we need to know what's happening. Unknown weakens and understanding what's going on medically can empower us to fight it.

Some of the doctors and nurses get teary eyed when they see us. I am so scared but as Marion said infections do clear. He is better today than yesterday so things are looking better, not worse.

Danielle

Re: Lung full of fluid

Hey, Lisa, Girl!!!  I just saw all this and just remember everyone is different!!!!
You are too busy buying wash machines so perk up there, girl!  This pertains to others. Let me see that big old Washington smile. There, you are looking  better already!  Attitude, Lisa, attitude and I know you have it. See, you have me as your very own cheer leading squad.

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: Lung full of fluid

Hi.  I haven't written anything for a while...

    My dad is actually doing a lot better.  The reason that there was fluid in his lung before, and the reason he is on oxygen now is that he has a large tumor in the pleura of his right lung. It developed rapidly, in about two week's time. It is crazy how fast this stuff can grow.  Anyway, while the tumor was growing so rapidly he was doing very poorly. He was so weak he could barely move on his own, he could not eat and all he could do is sleep. Now that the tumor has established itself and the growth has slowed down or stopped for now, he has rebounded.  He is on Megace, an appetite stimulant, and he is now eating three meals a day plus snacks! Granted, he is not eating as much as his pre-cancer self, but before the Megace we were lucky if he took in 600 calories for the whole day. Some of his strength has come back and he is even walking to and from the bathroom twice a day with the help of his walker, and he can get in and out of bed to his wheelchair now with no help.

     The bad news is he has a new oncologist he is working with and she is not familiar at all with cc.  She just told him the other day that tumors in the pleura of the lungs are so rare that she believes he has mesothelioma too.  I mean, can you imagine? So now my poor dad thinks he is the victim of two incurable cancers. I tell you, that day he just about gave up hope.  I have talked to him a few times since then, and I think I have him convinced that the stuff in his lung is metastases from the cc, but I know this has really put a damper on his spirits.
    He was all set to get a pic line put in and start chemo again, and now he canceled the pic line and is putting off the chemo.  Yes, it is palliative chemo, but I know he is now thinking he has no chance at all after what that new doctor told him.  She is located in the hills of Pennsylvania, and it is mining country up there, so she sees a lot of mesothelioma.  So instead of researching cholangiocarcinoma and knowing that it metastasizes to soft tissue throughout the body, she jumped to a familiar conclusion for her.  It just makes me mad.
     I wrote to my dad's first oncologist and told him what is happening and asked him to please call the new doctor and familiarize her with my dad's situation and cholangiocarcinoma as well, so hopefully he will find the time and be able to do that.  I think my dad needs to hear it from a doctor that he does not have meso.  Even though the end result would be the same whether he had one or both, I think that it is psychologically damaging to hear news like that and that the doctor needs to tell him she was wrong.
    Well I hope everyone else is doing as well as they can.  Just wanted to check in and nose around and see how others are doing and give a little update on my dad. Best wishes and prayers to all.

Re: Lung full of fluid

Hi Deb;
Thanks for the update on your Dad. I am glad he is feeling better but saddened by the progress of his disease. I agree that he needs to get in touch with his first Dr. Having one rare cancer is bad enough but being told that he has two must be devastating. I recently found out my cc is back with a vengence and now have spots in both lungs. I know the devastation I felt just from that news. I will keep you both in my prayers. Tell him not to give up. Each day is worth fighting for.
God Bless,
Jamie

Re: Lung full of fluid

Hi deb. Sorry your dad is going through such a rough time. To chemo or not is such a tough decision. Teddy & I have already decided what ever life offers we want quality not quantity. But honestly, it sounds like your poor dad is getting neither. All we can do is send you our best wishes and please take care of yourself as its a long rocky journey.  Hope we can have a little better news next time.

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: Lung full of fluid

Hi Deb,

I too am sorry to hear what your Dad is going through.  I will be hoping for the best for your Dad and will keep him, you & your family in my thoughts & prayers.

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.

Re: Lung full of fluid

Deb

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