Odds and Sods

I feel like I've had a busy couple of days emotionally. Nothing too extreme, really.. just feels it.

Yesterday I had clinic. I've been working a bit more consistently at my wii fit for a week or two, taken the time to drink a few more ensures, and it showed. Up a % in lung function (which still is 2 or 3 % away from where I feel comfortable) and up a pound in weight. Yay me.

I had a plan to ask about getting home oxygen. We might be flying somewhere on vacation in the next couple months so the absolute only way I am willing to do that, is with O2, since on our honeymoon my usually-generous oximeter said I de-satted to 85 on the plane. yikes. Well, as it turns out, I COULD have used the bloodgas I received during my admission to qualify me for home O2 so long as it was within a month of getting it done. I asked someone back then, and they said that ABG's taken when you are on iv antibiotics are invalid because they are not representative of the baseline value for a patient. Apparently, however, that person must have actually meant that if you are uncharacteristically sicker during an admission, its not a good idea.

ANYWAYS, so I swore (the staff in the pft lab encouraged me to) and sucked it up and requested yet another bloodgas to be taken. I got a different person this time and WOW.. I thought last time was good.. I didn't even feel the needle go in! I sat there holding my moms hand and shaking while waiting for it and as I sat I felt the characteristic chu-chug of my blood at my wrist. At that moment, E asked 'are you alright?' and I said 'yes, just hate waiting through how long this takes' and she said 'oh, well I'm just waiting for your blood to flow out enough, but I'm in there'. I was shocked. I felt nothing other than the creepy chugging thing. Actually I find clotting it up afterwards feels worse than any other part. Its icky imagining letting go of the dressing and seeing blood squirt a metre across the room. At least thats what I picture based on how it feels.

After all of that, well... technically before all of that... my nurse did her usual thing, but started with 'have you been assessed for transplant?' which I've been getting alot lately from the nurses. It frustrates me because shouldn't it be written somewhere? And why ask me so much now all of a sudden? So, I got assertive and asked the doc. She mentioned the obvious fact of my lung function (though its been relatively stable for 4 years as she later pointed out) and the conversation led all the way to her saying that she thought it was time to at least book a referral to the transplant hospital. I didn't really know how to take it. I knew all of this was nearing, but it baffles me how it had to be me asking to make her say so much. I worry for my family and how this will make them feel. My mom was there with me and she took it really well, but I told the doc that I didn't want her to send the referral right that minute, because I needed time to let us all absorb this much. She fought me, but when I reminded her that if I hadn't have brought it up she wouldnt' have suggested it, she gave in. I will allow her to book the initial meeting with the tx hospital in a months time when I next have clinic, and I think I'm goign to aim for spring for the 4-day assessment.

I've been assured that more than likely, I will not be considered ready to be on the 'active' list just yet, and that I should think of getting assessed as 'insurance'. Good, because that's all I'm ready for, but I think its healthy to get moving on this.