I caught a glimpse of my future

The other night I watched this excellent new show on ABC called Boston General. It's an actual show similar to Grey's Anatomy but real life. It follows a group of interns and doctors around Boston General.

It must have been Divine intervention.. because as it happened their first nights show had to do with Lung Transplant and Organ donation. I sat riveted and after it was over I cried like a baby. You hear the expression.. it hit close to home... well, this hit the house, knocked me out of my chair and kept me awake that night.

Those of you who are in the end stages of this disease God Bless you! There were 2 woman waiting for transplants. Somewhere in the middle of the country a young person had died and their organs were donated for transplant. The doctor flew across country. Once at the hospital where they kept the donor alive by artificial means different surgeons went in turn and removed what organs were viable and they needed.

This doctor took both lungs. He said even though the lungs looked perfect, pink and subtle there was no guarantee the transplant would be successful. And, one thing I didn't realize that since organs are in such short supply those needing a double transplant are usually overlooked because of short supply. Their thinking is... 2 lungs to save 2 people verses 2 lungs to possibly help one person. There are variables too though. How long the person has been on the list... Their health at the time organs are available (any infection or common cold can knock you out of place on the list), and age.

For the last few months I had been doing my best to ignore symptoms. They sneak up on you. At first you feel a little something here, then months later you realize.... Oh wow... that is a symptom of something wrong.

I am at the beginning of this journey. As bad as I think I have it now... there are many more who have it worse. That is not to say what I am going through isn't real or painful... it just means I have to do my best even on days when I feel like sleeping all day because I literally have to force myself to get up and do anything. It's not depression, it feels like exhaustion. Of course I haven't done anything to be so tired for. Since my pulse issues and other things I don't get up and do as much as I know I should! I absolutely know that I need to be walking. Of course until they figure out why my pulse rate is out of control I am not to do too much to make my pulse race or get out of breath. Which means... Nada!

Once a year in town the have a old car weekend. We went down with the Britt and Fernando and Layla and his mom to walk through a big park and look at cars. I would guess well over a hundred cars. Anyway... there I am packing my oxygen tank, wearing a cannula and sweating in the 90 degree sun. I ended up doing 2 laps looking at cars then excused myself and went and sat in the shade with Layla. I was out of breath, I realized that anywhere from now on that I go and have to walk a lot in the heat... I am out. It's just not for me anymore.

You know, when these things happen I get so pissed at myself. I can remember my parents at my age water skiing, snorkeling, mowing the yard... I will miss so much with Layla.

So... Like I said, I am near the beginning of this. Things WILL get much worse. I have no time range. I just know that in my family both parents and one Aunt... and all three lived only 10 years max once they got put on full time oxygen. That doesn't give me much time. This is something that once in a while I think about. I catch myself thinking of how old Layla will be? What age Bill will be? How long it would take me to pay off a new car? LoL

It's like I said... I know some days I feel bad, weak, breathless.. but I know it will get worse... so I had better (as my daughter says) "Put on my big girl panties" and learn how to get out there and do some living while feeling like this.

I know this lump in my throat/Thyroid is not helping things. Now just reading Layla a book makes me hoarse. Talking on the phone makes me hoarse. Getting into a heated debate makes me out of breath and hoarse. I also find that at night when I lay flat on my back it feels like my throat closes off, which makes it hard to get air.
I know that my weight can't be helping any of this. And I know from quitting smoking that I am making excuses to keep my food.
For the first 4 5 or 6 months I was so good at watching what I ate, and keeping portions in control and not cooking fattening things. Then I started cooking each recipe I am making for this cookbook of moms, and honestly... I just thought I have given up so much.... that I was going to hold onto good food.
Sooner or later I will have to begin my weight loss journey again. I am hoping that this summer my appetite will decrease and I will drop some weight.

I hate looking in the mirror. I hate that my skin suddenly has begun to hang from my body. My legs look like someone who had gained a bunch of weight then suddenly lost it... the skin almost overnight has begun to hang. Even on my arms recently my skin has gotten "loose". Layla and I were in their pool and she lost her balance. She grabbed my arm, but not around it.. she actually used my skin as a handle. I cracked up. It didn't hurt, but the next day my arm was purple and black.

I had Britt give me a hair cut. A big one! All my long curly long hair is gone. It's funny... usually the shorter my hair is the curlier.... not this time. It actually is straight and kind of dull looking. I wonder if the Co2 my lungs aren't expelling can damage hair? It sure has changed. Either that, or it could be one of many meds I am taking? Who knows!
It's all part of the new me I need to get used to.

That sounds so dramatic and I really am not being a drama queen. It's just that you have NO idea the frustration that I have. I see people much older than me walking with their spouses freely and painlessly. I watch adults swimming when I take Layla to swim lessons. I hear my friends talk about activities and I feel damaged, used up. This is where the anger comes in at myself for smoking and damaging myself. This is where the shame comes in that I let myself get like this. This is when the self pity starts and I have to fight so hard to just accept what I have to work with.

I hate it when things get to this point. And, they do and they will continue to. The good news is that... the time between these pity parties are getting longer, and the actual party doesn't last as long. There is my positive for the day!
I had to really reach for that one! LoL