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I never thought it might end like this. . .

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I am ashamed & embarassed to admit that I have been a lurker for a very, very, very long time and have never stepped forward. After sharing your tears and joys I have come to ask for some help/support.

My husband, a lifetime nonsmoker was diagnosed April 2003 with Stage 4 NSLC - a tumor in his right lung w/mets to bones and lymph nodes. He received carbo/taxol & radiation for several months and then had disease progression. Last August he entered a clinical trial of Erbitux and had great success until February of this year. He was then given radiation for a bone met and placed on Gemzar/Navelbine during March. April was a terrible month where he was hospitalized with a DVT. Less than a week out of the hosipital he was readmitted for pericardial effusion then a pericardial window was put in. At the end of the month he had a fluid drained from his lung. The first week of May he was put on Iressa which I had hung all my hopes on since he responded to the Erbitux.

For a while he had trouble eating and it seems linked to when he started Oxycontin. Last week he had a terrible coughing fit and then his voice became very hoarse. (He rarely had coughed previously) We learned this week, that there was a stricture around his esophagus and also a paralyzed vocal cord. The doctor recommended surgery to have a stent put in to open the esophagus so he would no longer have difficulty eating, another Dr was called in to resolve the vocal cord issue.

My husband had the surgery to insert the stent on Thursday. It was supposed to be an 'in and out' procedure. After the surgery they were unable to get him off the ventilator due to respiratory distress!! They put a drain in his right lung to get rid of some fluid because the Dr. thought it should help get him off the ventilator but it was not to be. The surgeon went back in on Friday because he noticed that the windpipe going into his right lung was mostly closed off by tumor. He wanted to open that up as well and insert another stent there. During the second surgery he found that too many branches of the broncial area were invaded by the disease and he couldn't get a clear passage through so they brought him out of surgery without actually doing anything. Still couldn't get him off the ventilator. . .

Now they tell me that I will probably have to make "the decision" in a few days. They don't feel the Iressa is working. Our Dr. is at the ASCO conference, but before he left he told me we are running out of options, and he didn't feel that my husband would want to spend the rest of his days on a ventilator.

My husband had no problem breathing before the surgery and now this. I always thought we'd have more time. How can you take someone off a ventilator when they can still smile when you tell them you love them, can still squeeze your hand to respond and is confused when they see you crying. I know that he still thinks he can recover because he's cooperating with the nurses.

The surgeon suggested we look into more radiation on Monday, but I'm not sure it's possible because of the prior treatment. I fear I'm running out of time.

Anyone have any advice, or know of someone who's made a comeback?

Thanks for listening,

Karen

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Karen,

I don't have any answers for you but I just wanted to say that I'm sorry for your pain...

I hope that someone else can help you with this situation and in the meantime, please keep coming back here for support. And don't be embarrased about your prior lurker state... this board is here in whatever capacity for whomever needs it!

Sending you and your husband best wishes ...

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So sorry that I don't have the answers that you are looking for. I'm so sorry that you and your husband are having to go through this. Just wanted to let you know that I will be saying a special prayer that your hubby can make a full recovery. Hopefully, someone will be able to help answer your questions.

Angie

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Karen,

This is a very, very hard time for you. Please feel my comforting arms around you and hugging you with love.

I am in a similar situation with my dad. He is on a ventilator and will never come off until he dies, or asks to be taken off, or I decide I want them to take him off. For me, and our family, the decision to remove life support is not an option as long as my dad is conscious, alert, responsive, smiling at us, and not in serious pain or in a coma. When a person is dying, they normally want to hang onto every moment of life that they can. That's one of the reasons that the end of life process can take so long - the patient WANTS to live and is hanging onto a thread of hope. I would VERY strongly advise against terminating life support unless there is absolutely no hope, and by no hope, I mean he has slipped into a coma out of which he will never recover, or there is brain damage beyond what life can support, or anything similar to that. I feel very strongly about this, and others may disagree. If you husband is smiling at you, squeezing your hand and reacting to your tears - then he is still very much alive and still has the power within himself given to him by God alone to overcome this setback and perhaps live for a considerably longer time. I'm afraid if you made a decision to remove the ventilator too soon, that you might regret that at a later time. I'm not saying that there won't be a right time - there might be, but I don't think with what you have described that now is the right time.

Just my opinion, Karen, but I do want you to know how sorry I am that you are in this situation at all. I'm also sorry you took so long to talk to us. We would have all loved to have been there for you during this battle you and your husband and family have been through.

Hang in there, keep the faith, and trust God.

Love,

Peggy

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Guest HerSon

My mom was on a ventilator for several weeks, and the ICU Drs. kept bothering me to pull the plug because she had LC and the ICU loses money on elderly Medicare patients. I would have never been able to live with myself if I did. You just never know if someone will survive.

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You are in such a sad sad place at this time.

I have worked in ccu where the families are encouraged to remove the vent-it is always for the patient they say, but it is usually for the staff's benefit.

If he is smiling and holding hands then I would hold his hand until he can not anymore. We all have such a short time here on this earth and we need to spend it making each other happy and feeling loved. Let God make the decision as to when it is time. You spend al the time you can with him and keep holding hands.

you are both in our prayers.

Don't be a stranger here, Cindy

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Karen,

I am so sorry about the pain you are going through right now. It is bad enough to watch your husband not getting better, but the drs. asking you to make this decision is just overload.

I agree with Peggy and Cindy. As long as someone I loved was responsive and not indicating they wanted to be removed, I would sit and hold there hand forever.

Whatever your decision, make it known to the hospital. Whatever your decision, you know it will be made with love and with the right motive.

Stay with us for the support and caring you need right now.

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Sorry I don't have any answers for you. I can however offer my support and prayers. I do have one suggestion tho. If he is alert and smiling and holding your hand, perhaps you might try asking him. Also when he snaps out of this then by all means get him a living will so you will know if it comes up again.

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Karen,

Last December I suddenly developed severe respiratory distress. I had a bronchoscopy from a pulmonologist who wanted to stent the bronchi to my right lung which were relatively closed off at that time. He determined at the bronchcoscopy that I was not "stentable" due to the extreme closure of the bronchi and the "hardness" of the underlying tumors. He said I would probably have to be put on a ventilator and that if I was I would never come off it. He told me I had very little time left. I was put on oxygen and chose to take radiation and some chemo. At that time I could not walk for 30 feet. My pulseOx was down to 72 without oxygen and I was very fearful. My condition stabilized until I had some bad reactions to chemo in early Feb. I suspended all traditional treatment at that time.

I then started an alternative treatment program and have improved considerably since. The extrinsic compression in my right bronchi has improved significantly despite the assurances I had received that no improvement was possible.

My point is that there is always hope and the Drs sometimes are wrong, particularly when they seem unduly negative. I am so sorry that you find yourselves in this terrible predicament. So I don't know if you could call my experiences a comeback or not, but I feel like it is. I'm still dealing with my disease but I'm under no immediate threat of having to be placed on a ventilator. I now climb stairs without difficulty and am able to do most everything I want (although at a slower pace) without critical SOB.

Best Wishes Always,

Dave S

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When I my wife died, I had to take her off the ventilator. She hadn't been on one until the last hour or so of her life. The disease spread ridiculously quickly. We have CT scans from March 4, and they look basically like the ones she was diagnosed with 14 months earlier, except for two small spots on her left lung. On the day she died, less than a month later, you could not tell from her scans that she had ever had a right lung, and the left lung was three fourths tumor/pneumonia.

We had a nice day in the hospital. Becky was on high flow oxygen, but not a ventilator. We had no idea things were so bad. But by the time she was on the ventilator, it was not able to pump enough oxygen into her. Her lungs were so bad that they simply couldn't oxygenate the blood quickly enough even with a ventilator to keep her alive. So for me it was an easy decision. Had I not turned it off, she would have been unconcious another 12 hours or so as her blood oxygen level continued to decline.

But your circumstances seem entirely different. There is no way I would turn it off as long as he is conscious. I am sorry you are on this road. God bless.

Curtis

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I agree with everyone who says do not turn it off. Doctors can be wrong. To me the thing is that the patient is smiling and holding your hand.

If a patient can make his wishes known in any way, this should be his choice. Only in a total lack of response should someone answer for them.

My husband chose treatment with the ventilator but specified temporarily only and if his condition worsened to turn it off, and the doctors honored that request when after 48 hours he was totally unresponsive and vital signs nearly nonexistent.

If I didn't know for certain the patient's feelings about life support, I would keep him on it until he improves or stops responding. If he appears puzzled as to what's going on, I'd keep giving him every chance.

Just my opinion. I hope this helps.

Gloria

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I wish I had more to offer you than simply my prayers....but you certainly have those. I think others have offered you some very sane and reasonable words to consider. Whenever and wherever there is still hope....I would alway opt in favor of that hope. If your husband is responding to you with smiles and squeezes of the hand...and you are unsure of his feelings re: the ventilator....can you ask him? I know it would be a difficult topic...but whether or not the doctor feels your hubby wouldn't want to remain on a ventilator isn't as important as you being sure how your husband feels about it.

I'm so sorry you are having to face this most difficult of times...but I am glad you came here as you will find much loving support and many prayers for you both.

I'll be thinking of you.....

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I too want to add my thoughts and prayers to those of everyone else here. I'd hang in there as long as he seems comfortable and aware -- the idea of asking him is a good, if difficult, one. Do you have some one else with whom you can share this - a family member, a good friend, an advisor, spiritual or otherwise? Not that anyone but you (and your husband, if he is capable) should make this decision; just that you need support at this terrible time.

Please keep up updated on what happens with him and with you and know that we are all thinking of you.

And reminding ourselves about the need to clarify our own decisions, via a living will and very frank discussions with our families, no matter what our situation.

Ellen

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He is still alive. He smiles at you and he hears you. .

If I were in your shoes I would forget about what would make it easier for the staff----they kept telling me to UP my dad's morphine when he was in NO pain (i believe to hurry him along- induce respiratory failure) instead of 24 hours like THEY said, he lived comfortably for 11 days while we all had our chance to hold his hands, kiss him, talk to him and say our goodbyes. Then He & God decided when it was time for him to go.

Miracles can still happen- your husband is in relative comfort and he is AWARE= ALIVE.

I would let God decide when his time to go will be and that may not be for a long time yet--miracles have happened.

I hate that you and your love are going thru this. God Bless you both.

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My cousin was in her early 40s when she went into respiratory distress. (she had been having strokes since she was in her early 30s.) She was ventilated. It has been many years, and she is still on a ventilator. But she is alive. She paints (beautifully). She communicates with our family. She is living, with the help of a ventilator. She says she is happy to be alive, in spite of very serious medical issues.

I am so very sorry that you two must face these questions.

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Thank you all so much for your words of comfort and hope and prayers. They really mean alot to me. My husband is still on the ventilator, but was not very happy today. Then I guess no one would be happy with that tube down their throat. He tells me he wants to tube out, but when I explain the consequences he gets quiet.

I'm hoping that tomorrow is a better day, apparently his breathing improved slightly. At least the weekend is over and the regular staff will be in tomorrow. It seems all our crises occur on weekends when no one is available.

Hopefully the radiologist will be able to do something for him. I'm praying for a miracle.

Karen

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I agree with all of the others. If I were the patient and I was able to understand what was going on around me then I would NOT want someone else making that decision, even if I was a little confused. Smiling and responding to your emotions tells me that he is very much alive. I am hoping the doctors are wrong. He has been through alot with all of the surgeries etc and needs some time to heal. If he goes into a coma or loses his faculties, the story will be a different one. But for now, I would not pull the plug.

I am so sorry you are having to go through all of this. It is not a time any of us look forward to but often one we will have to reach. My mother was on a vent for about 3 days. But she was in a coma after the first day and did not respond at all. Her kidneys shut down as well as other organs. We did ask for her ventilator to be turned off. We had promised her we would not just keep her alive if she was not able to respond. We followed her wishes. I have a living will and hope that you will have time to discuss this with your husband so that if this happens in the future you will know what his wishes are.

Best of luck to you.

Nina

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Dear Karen,

My heart aches for you, what a terrible choice to have to make. If my husband was able to smile and squeeze my hand I would not be prepared to let him go. As long as he is not in terrible pain I think there is always hope. I am so very sorry you are going through this and my thoughts and prayers are with you and your husband.

Paddy

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Karen, my wife's LC is similar to your husband. My thought and prayers go out to you. Unfortunately, some medical persons, including doctors, think lung cancer is terminal, and soon, and treat the patient that way. Don't give up the fight. There is no way I would pull the plug on Lucie if she could still respond to me. Two months from her diagnosis, she got a staph infection that went systemic and she almost died. She didn't. She recovcred. Last August, she got bilateral pneumonia and almost died. She didn't. She is now doing well. In the latter case, the staff was ready to write her off, but we fought for her. By the way, my wife was allergic to Iressa and it is believed to be the primary cause of her pneumonia. This is rare, but I would be inclined not to take the Iressa while having lung problems. Push the doctors to treat your husband to get well. If they won't, find some who will. Best to you both. Don

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