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Jeffrey,

Ask as soon as possible for the VA Hospital Patient Advocate to consult with you in your room.  Your ward nurse has the contact points.  Tell the ward nurse you'd like to consult with the advocate before preparing for discharge.

Tell the advocate about the lack of someone to care for you at home and ask the advocate arrange no cost home health care or a longer recovery stay in the hospital.  Do this quickly before the system processes you for discharge.

Stay the course.

Tom

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They are having a home nurse and a home assistant come twice A-day to prepare food only .The nurse world handle the medicine and change the dressing every day as it is going to need to be changed at-least until Monday 

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On 3/28/2017 at 10:51 PM, Tom Galli said:

Jeff,

Welcome here.  I'm also a vet but live in Texas and can't comment on the Tampa VA hospital.  My experience with the VA suggests once one reaches a hospital, the care is superb.  The problem is navigating all of the administration to get an admission and get in line for treatment.  

As a Vietnam veteran, especially exposed to agent orange, you ought to have one of the highest priorities for treatment.  So, perhaps your wait won't be long and the process won't be so involved.

You'll likely have many more questions.  From your description of tumors, I note right lung, lower lobe and one paratracheal lymph node.  Next step will likely be a biopsy to determine the type of cancer.  From your description, you might stage at IIIA.  Here is information on lung cancer staging. If so, your cancer is very treatable.  I was staged as IIIB thirteen years ago and I'm still around.

You'll likely have more questions and this is a good place to ask, so fire away.  Good job in rescuing your dog!

Stay the course.

Tom

Hi Jeffery.my husband is VA vet also and we go to Gainesville VA. We have appointment the 29 .he has 1.5 cm right upper lung and medistinal2.2 cm node pretreacheal  doesn't sound good to me.have to wait until we talk to doctor. I also had lung cancer right lower lobe vats surgery threw the Gainesville VA due to my husband having 100% disability.my experience with the V A once u are treated I had excellent care.I've read in the medistineal andenophy is enlarged lymph nodes which can be many things ;to benighn ;and Hodgkin lymphoma; if so that can be from h/ orange.this site is very helpful and I wish u luck.

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Well I got home late Friday about 4 p.m. after a two-hour ride in one of those little Mini Coopers horrible car. I went right to bed and fell asleep. I woke up about 4 in the morning and had to go into the bathroom the pain was so great or the blood pressure changed either way I slumped down out of the walker onto the floor. I stayed on the floor until about 7:30 a.m. when my friend that brought me home came to check on me and got me up and put me back in bed gave me two oxycodone and I went back to sleep. The next time I do this I will pay closer attention to Tom as I should have stayed in the hospital at least until Monday. But I am a pushover. So it's Sunday night no nurse no help no phone call from the VA up until this point they have been absolutely wonderful after they got started. Dr. Hong said he is confident I will have to do chemo therapy but I can do that up in Albany New York or Burlington Vermont

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The pain from coughing is still quite severe and my voice is high pitched and funny sounding because I guess the nurse said they pinched my trachea closed some. I think if I had stayed in the hospital until Monday the recovery would have been quicker.  I have read that if the VA feels they got all the cancer out through surgery and you go through the chemo chemo and now they don't find cancer you lose your VA compensation benefits is this true. That would be a real slap in the face.

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Jeffrey,

I wouldn't know about withdraw of benefits but I wouldn't worry about it yet. You are some distance from a NED scan and I can research your situation when I get back to my computer. 

Just stay focused on recovery for now. 

Stay the course. 

Tom

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Tom I found out this morning that if you're 55 or older the chances of the VA changing your benefits are slim to none. I think I have that covered by at least 10 years hahaha. I woke up again to my chest and my back on the right side under my arm where they did incision swelled up quite nicely as it has been. I am wondering how long the swelling will take to go down now. I am just anxious to get this over with I know it's only been a week. To anyone who may be following or contemplating doing this it is hard but you can beat it I will

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Jeffrey,

I found swelling a normal part of surgical recovery but have the nurse check for fluid build up in the suture area. If fluid under skin, the nurse should consult with the surgeon. 

Good news on benefits. 

Stay the course. 

Tom

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Jeffrey,

My mom had her upper right lobe removed in January 2016. I've been reading your journey so far through this post and hear some of the similarities.  It took her awhile (a month or so) to feel that she "recovered" from the surgery enough to resume some of her hectic daily schedule.  After surgery, she had quite a bit of fluid built up and had to have some of it removed at one point.  She still has some fluid around her lung from the surgery but it is slowly decreasing now on its own.   We are told if may never totally go way, but not to worry - I would still be sure to have it checked as Tim said.  Even more than a year later, she still has pain where her incision was, she is told that is normal due to all of the trauma that went on in that area.  

I wish you the best in your healing process and hope all goes well for you.  Take care

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Sorry to hear this has happened Jeffrey. Have said a prayer for you.
Judy M

Sent from my SM-J100VPP using Tapatalk

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Jeffrey,

Very sorry to hear you are back in the hospital.  Unfortunately, in some folks (like me) one thoracic surgery is not enough.  I had three and I'm still here.

I hope they are going to try non-surgical procedures before proceeding with resecting the entire lung.  Also, when this resolves, be more assertive in staying the the hospital until you are recovered well enough to care for yourself.

Stay the course.

Tom

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More news it turns out that they cannot remove more of that lung due to who knows what. I was supposed to go home maybe late today but the doctor said the cultures came back and I have some kind of a fungus or something growing in that lung. Those doctors will be around late today and explain how they will deal with what is called and infectious disease. It just keeps getting better. I'm beginning to think I am in hotel California you can check in but you can never check out. If God would just give me a little help with this one once again I will be in his debt as I am forever and ever as it is now anyway. Really getting discouraged.

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I'm so sorry for all the complications there, Jeff,

Sending good vibes and encouragement.  Thanks so much for your service.

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Jeffrey,

I was back in the hospital 5 days after my lung was removed with an infectious disease also.  The used an ingenious pressurized spray device to treat my empty right chest cavity with antibiotics. It seems these chest tissues are not well supplied by blood vessels and a chest tube was installed as a drain.  I had a weeks worth of IV antibiotics also and the infection was finally controlled.  I was also treated by an infectious disease specialist.

I hope they find and fix your problem quickly.

Stay the course.

Tom

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Hi, Jeffrey,

We're thinking of you! I hope that you can get home soon! Please post an update when you can.

Lauren
--
Digital Community Manager
LUNGevity Foundation

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Home again on the 7th , mostly sleep. Had some nasty steroids ans such , feeling better but chest hurts. Va is on the ball with chemo , lining me up with Albany and Glens falls up north asap.

Moving 1st of month .

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Hi, Jeffrey,

I'm glad you're out of the hospital. How did the move go?

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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The move was a little hectic seeing how I could do very little because of the surgery. But my brother was with me to help with the moving van and get my truck shipped up here to Ticonderoga New York. I finally got to the Albany VA and they are going to do a new pet scan as soon as possible. And then they're going to put a port in and start me on something called cisplatin and gemzar. The doctor said because I already have neuropathy I will wind up in a wheelchair but we will see about that. I have made it this far I am confident that I will walk again. Getting the internet turned on took a week and I'm still working on getting phone service. Things really go slow up here in the mountains.

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