Thursday, November 25, 2010

One of the things that has bugged me since day 1 is a fear that I gave up on Gess too soon. It all happened so fast. I know that might sound weird considering how sick he had been and how often he had been in the hospital, but I didn't think that he was so close to death. At times Gess said that he felt like giving up and I remember telling him that he wasn't sick enough to give up. His PFTs had taken a hit, but he was still in the high 30s and not on O2 consistently. So, this seemed like a bump (albeit a big one) in the road.

When I look at the "facts", i.e. his kidneys were failing, they had to discontinue antibiotics because of that, without the antibiotics his lung infection couldn't get any better, without his infection improving he could not come off of the vent, his body was not accepting any nutrition, etc., I know that it was time and I didn't give up too soon. But there is this nagging fear in my heart that I did. He was such a fighter and always came back from such bad places.

In the early days we was clearly fighting; trying to get the vent tube out of his mouth, insisting that the doctors try to take it out again and again, etc., but by the time I made the decision, he has been non-responsive for about 2 days. The only time he would have any sort of response was when they tried to suction out his lungs and he just appeared to be in excruciating pain. In sitting with him, I didn't sense any fight left at all. He already seemed gone.

I know that he didn't want to live on a vent and wouldn't want the life that he would have if by some miracle they could get him off of it. So in a sense, he had made the decision before, told it to me clearly, and I just had to verbalize it when he couldn't. But I could have said no, I could have said "keep trying." I could have fought for him longer. Should I have fought longer? My mind says no, but my heart isn't so sure.

Even after the decision I kept waiting for him to sit up and say "just kidding!" Even now, I keep waiting for him to walk through the door or to call me. I know that it is not going to happen, but my heart won't let go. What if I killed my husband? What if I gave up on him and failed him?

In the middle of the night I got the "bright" idea that I was going to try to contact his doctor and have him tell me that I was right, but I'm not sure that is appropriate, or would even help.

I just want to be at peace about what happened, but I can't. I miss him so much it hurts. I am tired of walking through these days without him. I know that we have a "real love" and that it was "special," but I still want that back! I don't want to be a widow. I don't want to do any of this. And I'm scared.


Dan said...
This comment has been removed by the author.
Dan said...

I have never met you personnally. I know you only through class and FB. I can tell you for sure that if there was any hope, or any chance that things could have changed. Your friends and family would have stepped in to help you. Your mind can rest easy. You gave everything you had and fought as hard as you could fight.

Amy said...

Like Dan said If the doctors thought he could come out unscathed they wouldn't have let you.

My dad also had to make this decision with my step mom. She fought for 6 years with breast cancer, then bone, then brain. She was in the hospital for 4 weeks and by the end she was unresponsive. My dad finally said to "pull the plug". He was sad to see her go but he said the relief he felt from knowing that she wasn't suffering anymore really helped. Yes he misses her and wishes she would walk through the door, but he knows he made the right choice.

It is only natural to question yourself. But don't ever think that you "killed" your husband. CF did. And you gave him the greatest gift....a wonderful life, and a peaceful end.

Cystic Gal said...

You did not give up on Gess. I wrote an email to Amy, Piper and Tiffany after I read one of your posts giving the details of what happened with Gess. I had the same situation, without the kidney failure, a year prior to transplant. In October of 2009, I went from "consider maybe meeting the transplant team" to respiratory failure, sedation and only because I and my family did not consent to me being intubated, 48 hours of serious bipap, and another week in ICU. Indeed, I almot did not make it onto the transplant list. Many of the details of Gess' story and mine were the same, only he moved on to heaven. It happens so fast, too fast, but you would not, could not, have done anything differently.

Shannon said...

Lisa, I wish you weren't battling these thoughts, though my guess is they are pretty common for people who have had to make the kind of decision you had to. I bet though that you two were in tune enough with one another that your decision is the same one he would have made had he been aware of what was going on. I hope you come to a place of peace in your heart after you process through this all - I can't imagine how hard it is for you to wrestle with all the heartache and grief and questions that you must have going through your mind. I know, as your friend, what devoted and loving wife you were and from that perspective I believe in you and the choice you made. You were brave and made what I believe is the truest act of selflessness and love that one can make for another. You are a wonderful woman, Lisa. I continue to hold you in my heart and wish you healing and peace, all in your own time <3

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