Thursday, August 08, 2013

Dear World,

Dear World,

It has come to the attention of my medical team that I am indeed at end stage CF. I've had quite a startling drop in lung function in just 7 months. My new normal is around 30%. I keep walking around the house thinking, "This is what dying feels like? But I feel so normal."

Yes, this is what dying feels like. When your life is consumed by eating, sleeping, treatments, tubes, cords, IVs, and lots and lots of oxygen tubing to trip over.

In my small little house we've set up two compressors. I finally bit the bullet and bought a second one, a Sequal Eclipse with AutoSAT technology, as it says so on the box, so I can keep traveling over night, as long as my needs don't exceed 3LPM. When Paul signed for the package, for the first time ever, the UPS man commented on the delivery. He said, "Here's some kind of satellite."  Paul didn't correct him, as the UPS man was 10 brown boot steps from the door by then.

The oxygen helps me keep my breath and I notice I can yell louder to the kids or my husband when they're not in my room and I desperately don't want to get up for the bazillionth time and drag my tubing behind me getting caught up every two feet on something in my way. It also helps lower my heart rate. Even when my lung function was good, around 42% and life was hard, really hard, because I was keeping up with the Jones', my resting heart rate was really high.  It went from 80-90 to 110-120. And when I do stuff it's in the 140's and 150's.

Apparently there are only so many beats to a heart and then you die. So we are doing oxygen therapy so my heart, which is currently in good shape, just high, the oxygen slows it down by about 10-30 beats per minute. So as I sit here typing to you, my HR is 98bpm, vs over 120. That's good news! The oxygen is working.

So this is what dying feels like. I'm not in any pain at the moment. I'm not even short of breath really. But I feel tethered to my oxygen and I can only stay awake for so many hours before I collapse in a puddle of nap goodness on my bed. I can honestly say I have felt worse, way worse, many times before. My doctor seems pretty certain that I'm ready for transplant evaluation. I never thought I would be here at the age of 37, when at the end of December, I finished IVs, I was 36 years old and my lung function (FEV1) was 42%. I've never taken a steep dive like this, and it's all been because I have been hit by two viruses, one strong in January, one weak in June, and extremely pan resistant pseudomonas aeruginosa filling my lungs.

My kids are handling the new tubes great. They are always asking me if there's something they can do for me. I love that. I think they just like the fact that I have no energy to watch them so they are watching TV all day. That will end soon, as school starts on Monday!

I once heard a startling fact on the internets, so you know it must be true. 50% of CFers die before they reach age 37. This is a fact in 2013. But the startling fact was 5% of CFers live to be 40. When I was feeling "so good" at 36, but life was hard, so hard, I had calculated that I had 8 years before transplant evaluation. I have always ALWAYS declined at a steady rate. I have classic Cystic Fibrosis. Not this year. Not when I'm past the median age. Not when I've been kicked down by one too many viruses. Just colds. Maybe a flu in there. Who knows. If all goes according to plan, I hope to be transplanted in the next 2 years and then maybe I'll live for at least 10 more.

I'll leave you with happy faces from last night. Aren't they beautiful? Paul and I made those!


emily. said...

So beautiful. I don't like hearing you give yourself an expiration date. This may be the start of a new phase, and it may have come a little sooner than expected, but I have complete faith that this will allow you to stick around and live BETTER for a very long time. Much love to you, Tara.

Lauren said...

Tara you've always been such an inspiration to me. I've been running for a few months now and am motivated by thinking about how you kept running even when you needed oxygen. Are you still running? June wasn't that long ago...I have hope that you can still recover some of the lung function. Sending you lots of love and well wishes!

Shannon said...

I relate to so much of this - being 36, having 2 kids, the swift change of directions with CF (which I felt I should have anticipated, but for me, de nile runs deep). It's hard to wrap your head around it all even though we have been dealing with Cf for thirty some years. I'm glad that you sound positive about TX - I'm struggling with that myself and declined even having a consult at this time. I am right with you in this change of pace and sending lots and lots of love to you, Paul, and the kids during this time <3

Jessica said...

I agree with Emily. NO expiration dates, please. But, I get it too. You want us to all understand and be realistic about what is going on and I respect that.
What I love about you is that you are a fighter. I remember when we were in college and with CF, you kicked all our asses at intermural sports!
You are in my heart and I think about you all the time. I am happy that you have a wonderful family to support you. You and Paul broke the mold with those kiddos. Thank you for sharing with us even though it is hard to hear. Let's find you some lungs already!!!! xoxo

Chipmunk Chatter said...

I too don't like the expiration date...I know we all have one but that thought of it sucks.

I also agree that you are an incredible fighter and one with the most positive outlook on everything. I truly admire both of those qualities in you with all that you have to go through.

Please let me know if I can do anything for you throughout this process and I will be thinking nothing but good thoughts for you that this process goes well and that you are breathing better when it is all done. :)

Christina said...

Wow, this sucks. I'm so sorry that you have not been doing well. I hope the doctors can find a way to help you live longer, live better.