Wednesday, August 28, 2013

Holy Creatinine, Batman!

My nurse emailed today. "I have some blood work results from Monday," she says.  Most of it was good news, no, fantastic news. My kidneys are almost NORMAL! I haven't seen numbers like this in years. There's no reason for the sudden normalness, but I'll take it.

My creatinine was 0.99, even before I started IVs it was 1.22. My eGFR was 73. What, what?! That is a NORMAL value. Are we sure we tested the right person's blood? I'm so pleased.

BUT my iron is low. Very low. So low my nurse thought I wasn't taking any iron supplements. 9.0 to be exact. That's low for a normie, and even for a CFer. And it's very low for someone taking iron! To be honest, I've never hit 12.0 (the low end of normal) in my life, so I'm not asking for much. But a couple of points, puh-leeze, after I spend $45 on a supplement that lasts just 15 days. You know what this means, steak. Lots of steak. Steak every night!

We are in the midst of thinking about planning the twins' birthday party(ies).  I think they are splitting up this year. Funny though, Tom does not want to miss Abby's party. Abby could care less about Tom's. Should be a fun month ahead!

Sunday, August 25, 2013

Small Update

My nurse emailed on Friday to say she had sent my referral to Stanford. What this means is Stanford now knows who I am and that I am asking for a chance to meet with them for a double lung transplant evaluation. I'm not sure what will happen first.

They might contact me to say they have the referral.

They might contact my insurance to see if the transplant evaluation is a covered benefit. (It should be!)

Once my insurance approves the transplant evaluation we will talk about dates to do the evaluation. At this current time they are booking evaluations approximately 6 weeks out. If the stars align I expect to be evaluated in November. I'll be lucky if it's October. I just hope it's before I get my first virus of the winter season. Sometimes I don't get sick until Thanksgiving, so I think we have a lot of time to wait and play with.

That is all the news I have for now. I know it's not much, but it's something.

In other news the twins are thriving at school. Their fourth grade teacher is amazing. They really love him and he loves them. He is a big history buff so I'm sure the kids will learn more than I know about all sorts of history facts. He also likes to play cribbage and chess. He has already started teaching the class how to play chess. They are starting with the pawns. Tom was so impressed he said "Mr. S. is the best teacher I've had because no teacher has ever taught me how to play a board game before! Except Mrs. R. (third grade) taught us German Dodge Ball and that's pretty amazing."

Tom and Abby were so excited to start playing chess right away on Friday when they got home. They made me make a chess board out of a piece of paper with 1"x1" squares. I ended up ordering a cheap magnetic chess set with plastic pieces they can tote back and forth to school on Fridays "Chess Day." And they will be able to play at home as well. They don't know about it yet. It arrives on Tuesday. I think they will be ecstatic!

Wednesday, August 21, 2013

To Transplant or Not

Well, it's official. My doctors have reviewed my case and they are confident it is time to refer me to Stanford for a transplant evaluation. Once all the ducks are in a row and paper work is faxed away, it could be a few weeks before I hear from Stanford. Then it will be 6-8 weeks before my 4 day testing of evaluations begin.

I'm going to need lots of help during those four days. I'd like to have as much company as possible. Paul of course will be with me, but it'd be good to have an in-law, sibling or parent with me as well. We'll be living in a hotel across from the hospital for 4 days and it will be exhausting for me and everyone involved I imagine.

Oh, and I'll need a babysitter for four days as well. I'm hoping it can be during November when the twins are out of school. That would work best. Heck, if we all wanted to go down there and get a few rooms we could do that too.

I would just need someone to entertain the twins in Palo Alto while I do my testing. Most of it is eduction but there are a lot of blood draws, CT scans and a right heart cath, usually on the last day, which is the most grueling of exams.

I'm really looking forward to the testing phase to find out if I get listed right away or if I'm too healthy. They take into account quality of life, what you used to be able to do and what you do now. I feel like an ideal candidate because I'm strong at the moment and I'm extremely compliant. I'm also in a good place mentally, when haven't I been?

Well that's about all the transplant news I have for now. I'm just sitting and waiting.

In other news flu shots are out! I'm going to Rite Aid to get mine today. Walgreens has the mist in, so I'll be getting that for Tom and Abby after my meeting with their teacher. I'm anxious to meet with Mr. S. to find out what accommodations he can give to Abby for her learning disability. Hopefully she'll be tested at Sacramento State soon. Once they start up school there they have this class/program that tests any child on the waiting list for just $200. I can't wait to have that paper in my hand to finally prove she is dyslexic. I know in my heart that she just needs different ways to learn. I hope the school can provide that.

In other other news this morning Tom kicked butt in his tournament this weekend. He shut out 3 halves in goal during the first two games on Saturday. No goals scored against. Then On Sunday he did pretty well. He wasn't pleased because we lost the first game. But he got all jazzed for the second game. He said, "Mom, I have lots of energy, I want to play the field." So Coach put him in as forward and in 104 degree temperatures he sprinted his heart out, stealing the ball, dribbling through defense and assisting one goal and scoring another. We creamed the team about 7-1. It was the same team we played in the morning. Having Tom out there made a huge difference and having the boys out for revenge also played a huge role. In the end we got third place in the tournament out of 6 in our bracket. Not bad! Tom was SO PLEASED! And I was a very very proud mama.

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!