This isn't how my life was supposed to be

I have been holding off blogging until after my doctors appointment. I wanted to be able to share results and I was curiously wondering what my FEV1 levels were going to be. That is how they measure progression of emphysema, it's the lungs ability to expel air.

I had taken Brittney with me. Most times I have a doctors appointment I am concerned about I take someone with me to hear for me. It has been my experience that when I hear the first bad word out of a doctors mouth my ears go deaf.

So after all the tests I waited for the pulmonologist to come in and talk. I thought I would get my meds increased possibly. Most likely get told I need to lose some weight, and sent on my way being told to come back in 3 months unless I needed him sooner.

Britt and I watched as he came in and talked about my heart rate. He wrote a prescription for high blood pressure, trying to get this pulse of mine under control. He said the findings from my echo-cardiogram didn't show any abnormalities so he wasn't concerned there, but my heart rate needed to be addressed.

Then............. He said... I want to talk to you about options. I think your next course of action needs to be TRANSPLANT. TRANSPLANT! TRANSPLANT! TRANSPLANT! That's all I heard the rest of the time we were there. I know words came from my mouth, and I nodded when I was supposed to, but I could not tell you for sure anything else that was said. Well, kind of.. but I am glad Britt was there.

He explained that there are 2 transplant hospitals near me. One is in the Bay area @ Stanford. The other is at the University of Washington Hospital in Seattle. The choice was mine, However.... once accepted and put on the list I needed to be an hour away from the center. Well, we are about 8 hours from San Francisco and about 12 hours away from Seattle.

It of course takes time to prepare and do all this. First I have to pick a hospital. Then he has to send them all my test results and information, then once they look it over they will send me paperwork to fill out and send back. Then they (the hospital surgeon I have chosen) will schedule an appointment with me to discuss my options.

And, before I am accepted I have to have a Body Mass Index of 32%. I have no idea what mine is now. But it's pretty close to liquid! LoL So, I start a rigorous diet. No exercising until my heart rate is under control but diet, diet, diet.

My doctor told me he has had patients do different things. One lady paid a pilot to be on standby for her to fly her to San Francisco and that hospital accepted that. One other couple had a motor home and parked it in a park north of Stanford.

He said it can take years on the list. In the meantime I have to remain healthy. No choice, no exceptions. If I am accepted and get the call and have the slightest infection then I am moved back down the list and someone else gets my lungs.

That is another thing... Neither Britt or I asked if this is a singular or double transplant situation. So, I am not sure. I would assume that they will go over that with me in Seattle.

And, as luck would have it... I have a cousin who is a Nurse in the transplant ward of the hospital at the University of Washington. I had forgotten, and ran across his profile on face book tonight and so I sent him a private message and asked him if this was him and he had the choice of his hospital or Stanford which would he choose. He told me Seattle and said he would recommend a surgeon for me. And he would be giving me my after care. Odd huh?

Anyway. I am stunned. I am irritated. I have cried so much (my pity party) my eyes are swollen almost shut and burn so bad. I have had this headache for however long... well tonight it has taken over my head, neck and shoulders. I just hurt.

I haven't given up. I just am in shock.
Tonight though I can safely say I feel beaten.

To top it off Bill is wacko. He talks a lot anyway.... But tonight he is babbling, calling his friends to tell them "the good news". If I hear from him ONE MORE TIME that this is a fabulous thing I will beat the shit out of him and go insane. He has said about 10 times tonight alone that he would rather me go through this surgery than to have my ashes on the mantel. Well DUH! I understand in a few days I may see this as a new start, as a good thing, But tonight No.
Tonight it is scary, it is shocking, it is me being forced out of my denial and I don't like it.

Never in a million years would I have written this life story for me.


It's funny this morning when I woke up I was sitting in my chair watching the news. First time in weeks I had actually made it up in time to watch any news. It was just me and all of a sudden I smelled my mom. I smelled her perfume like she was standing in front of me. It was the first time since she died I felt connected to her. That should have told me something,

I am sure I am be OVER-LY dramatic. But like all my other issues... give me a few days to have my pity party and I'll bounce back and see the bright side of this. Right now it just feels like a heavy weight on my shoulders.