Thursday, September 19, 2013

Transplant Just Got Real

Whoa, so.... I finally heard from Stanford this afternoon. They have a 4 day long double lung transplant evaluation process where I get poked, prodded, and attend information meetings with all sorts of transplant officials.  It's a Monday through Thursday process, should I be willing to take the challenge. I was told that it can be broken up into different weeks if I so pleased. No thanks, just hit me all at once!

They have dates open starting October 7. Let me say that again, October SEVENTH!  That my friends, is only 2.5 weeks away. Yes, please!

I already got my financial packet in the mail this past weekend. My insurance is awesome. They cover everything, 100%, even 2 meals a day for two people, up to $10K in total during my actual transplant. Can you believe that?!  And I have no lifetime cap with this insurance. Open enrollment for Paul's employer is coming up in October, I sure hope we get to keep this insurance in 2014.

So that is my news. I know October 7-10 will be long, hard, grueling days because of course I have boundless energy, because I'm dying and all. I actually feel pretty strong and good and I think I can attribute that to my oxygen tether. My next appointment for some lung function tests is in one week with my regular doctor in Sacramento, next Thursday. I don't feel better than a month ago, but I don't feel worse either.

I'm not sleeping well, but that has been the case for years. It's gotten worse this last year, as Paul has told me that my restlessness actually keeps him awake, or wakens him nearly as often as it wakens me, which is a lot, I've learned. I have this smart pedometer I'm wearing for a month. It's called a FitBit One. It tracks the movement of my arms during my sleep so I can see that I'm not out cold for more than 60 minutes at a time, and if that length of time happens more than once in a night, hallelujah! It doesn't. So I've learned that I'm getting a choppy 5-6 hours of actual sleep, while attempting to sleep for 10+ hours. No wonder i'm tired!

That is all. Team Telford out.

Friday, September 06, 2013

One More Hurdle

The latest on my double lung transplant situation:

I heard from my nurse last Friday that there was a test Stanford wanted me to do before they would even consider me for transplant. My nurse emails and says, "I hope you don't have to do THAT test!" And she sent them my latest creatinine score of 0.99...and then we waited over the holiday weekend.

And waited.

Longest weekend ever.

Tuesday rolls around and my nurse says, "So they want you to do THAT test. Here are the orders." Basically I had to collect my urine output for 24 hours, store it in a milk jug type container on ice and return it to the lab the next day. Well I returned it on Thursday morning and the results were in today. I don't know what the results were, but Stanford liked them!

So now there's just one more hurdle. My insurance has to approve the money for the transplant evaluation and THEN I can be schedule for the 4 day tour of my body to make sure I'm sick enough but strong enough to require a double lung transplant. Whew!

On the way home from allergy shots today I told the kids this news. Then the question came up, "Mom? How long do new lungs last?"  Well since there really is no answer to this question I said, "On average, 5 years."


"Mom? What happens when they expire?"

"Well, you either go get more new lungs or you die."


"Ok" they both agreed, then Tom says, "I would just keep going back for more and more until I was used to it and it didn't matter to me anymore that I was getting new lungs. It would just be like, "oh we're just back at the hospital for a month again for more new lungs" and then I would go on my way."

Yeah, it works something like that. When you're 8.

I should also mention that the blood creatinine THIS time was 1.23 which is more my normal value, which is "normal" for me, but high for a normie. I'm not sure where the 0.99 came from. I honestly think it was a lab error since I haven't been that low in a decade.