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complications and 2nd opinions;


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Hi all;

And yea still in the hospital. Had some barium swallow tests today. Seems that I'm not getting food to the stomach. It goes either directly into the lung or is exaspirated. The overall plan right now is to get a feeding tube in as I have not eaten in a week now. :( Yea this does suck. Of course the million dollar question is why or better yet what can be done to correct. It seems from last weeks scans that the lympth nodes, ( suspect ones in center of chest) may be pressing against the esoghogus or connection. The node is suspect of being hot and its growthmay be causing the problem.

Guess, I'm just looking for 2nd opionions on this, think I need to get a thoracic surgeon in on this. Rather, than either radiation or chemo. I would more than anything like not have this feeding tube a perminent thing. Or rather see if anyone has experienced anything similiar. As it stands, theres no set plan for this and I still have MRI' s coming up to see if brain mets were taken care of.

any help would be appreciated. much on my plate right now!!

Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/02

brainmets found, 12.18.03 / WBR completed 2/11/04

waitin & wonderin - " absolutely insist on enjoying life today"

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Bob,

I don't have any advice, as I don't have a clue. But please know that there are some folks down here in Georgia who are sending up some mighty powerful prayers for you. And we'll catch a fish or two in your honor this weekend. We look forward to your being able to go fishing and golfing again - soon!

Blessings,

TeeTaa

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Hi,

Nothing much to offer but prayers.

I hope somebody in this board can answer your questions and give you enlightenment on your issues. I am keeping my fingers crossed that the doctors find some kind of resolution to your problems other than a permanent feeding tube.

Hang in there!!!

Prayers,

Theresa

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So sad to hear of all your problems. If you have not been able to eat in a week sounds like the feeding tube is a good , at least temporary, fix. This will keep you with good nutrition to heal from what ever needs to be done to rectify the problem. Prayers going up that a good solution will be found soon and plans put in place. Donna G

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Hey Bob,

Wow, when does this crud END??? I too have to agree with the Surgery part of things. It sure can't HURT TO ASK!! And of course it makes sense to us, but.......... as always, what do we know.

I'm sending you very WARM AND GENTLE HUGS. Like Donna G said, it's cold here in Minnesota today, but, my heart is warm and your in my heart and in my prayers my friend.

PLEASE DEAR GOD, MAKE MY FRIEND BETTER SOON.

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Okay - enough now Bob!

Hang tough, as you always do, listen to all the options, and then make the choice you think is best for you. You've done a great job so far......trust yourself and your "intuitions".

((((((((((((((((HUGS)))))))))))))))))))

Wish you weren't still there,

Prayers going up now,

SandyS

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Hi Bob,

sending prayers for you right now... My dads pulmonologist once told us, if you have questions about the lungs, you ask the lung specialist, if you have questions about the cancer you ask the oncologist, and surgery you ask the surgeon, his point was to go to the one who specializes in the field that you are concerned about..

One thing I always hated about the hospitals is you could never get a straight answer, but it does sound like they have an idea of what is causing your problem, let us know what they come up with in the meantime I will keep you in my prayers...

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Dear Bob - So sorry to hear about this set back. I agree with Sandy, sometimes our "intuitions" are what we need to listen to. Speaking witha surgeon sounds very, very logical to me - rectify the problem quickly rather than wait for Chemo or radiation to take care of it. I know the thought of a feeding tube is depressing, but just think of it as a temporary fix. My prayers are with you and your family. Love, Sharon

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Dear Bob,

I haven't posted often but I have really been keeping up with your progress. I admire your zest for life and your attitude. I want to join the others to let you know you are in my prayers and send hugs your way. I agree about the surgeon, I would consult one asap, but, remember you need to be as strong as possible before you face major surgery. Give the tube a few days and get your stamina built back up. Sounds like you have them jumping at that hospital. Keep it up. Keep us all in touch.

Nushka

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Bob,

Like everyone before me has said, get the feeding tube in so at least you can get some nutrition in your body. It doesn't mean that it is permanent, what goes in can come out!!

Keep pestering everybody about what can be done to make that lymph node gone as soon as possible if that is the problem. Don't take no's for an answer. Don't MAKE me come up there and fight those doctors for you!!!

This does suck Bob, there is nothing else to be said about it. But you have been "down" before and have gotten back up and not only survived but become a power of example for others... its time to do it again.....and I have faith that you will....

I'm with you in spirit.

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Gosh Bob, I can recognize your anguish over this development. I dont know if this helps or not, but due to the location of my tumor one thing the Drs are concerned about is something called a Tracheo-Esophageal Fistula. There is a surgical procedure that can be done, often successfully, to alleviate the symotoms of it and allow you to eat. It can also be caused not from tumor but as you mentioned an enlarged lymph node.

I am keeping you in my thoughts and keep pressing the Drs for an answer. Easier sometimes said than done, I know

Elaine

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Bob,

The tube sound good, had one when I was in a coma, it

came out OK, just a wee bit sore for a few days after but it

kept me strong.

That would be a way to wait for all the answers and results of

the tests and you could have your choice of treatment or

operation.

Good luck.

J.C.

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Hi Bob,

I can't believe all this is happening to you.You have been in my thoughts and prayers.Like everybody else I would think that getting nutrition back in you would be priority now.You will have to be strong for anything else that comes.Don't think of it as permanent.Just think of it as loading up for battle again.And a fighter you are.TBone

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Hi bob

my mom had a G-Tue (feeding tube) put in bacause of the same thing, when she would try to eat or drink she aspirated and got pneumonia to where the lungs collapsed. She hated not being able to chew but she did put some weight on with the tube feedings. She got full real fast though. There are things called Kangaroo pouches that you can hang what looks like an IV bag and fill it with anything from koolaid to ensure to get food/liquids in you, we did that for mom so we didn't have to feed her ourselves through the giant needle looking thingy.

the balloon that holds them in place inside the stomach on hers popped once and it fell out completely and at the er they just inserted another one in (the er dr. says that happens allot to older patients who play with the tube. be careful with the hold in your stomach around where the tube is inserted, make sure it stays very clean and dry. moms got wet and got infected and the smell was our first clue. (corry for the graphics but thought you should watch for this stuff) make sure its cleansed with anti bacterial wipes or something similar to keep germs at a minimum.

pm me if you have anymore questions.

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