San Francisco

San Francisco....

That is precisely where we spent all day. What a glorious day! First off Seth and I attended church at Reality San Francisco.   If you live in, or near the city you should really go and check it out!  What made it extra sweet was to see my dear, old friend Tim and the amazing Joenses.

Since we were already in the city, we decided to mosey around and see what we could see. We parked somewhere above Ghirarelli Square and ended up walking all the way to Pier 1 Port of San Francisco.

I don't know how far of a walk that is, but it was a long way!  Love.

We boarded a Ferry headed for Sausalito!  Riding on the roof was so chilly and breathtaking.

When we arrived at the other side of the bay, we sat in a coffee shop and attempted to teach ourselves how to play cribbage.  Attempted being the key word. Haha.

Muggins!

We came home on the F train.....

Rehab Yesterday

Rehab went well!

At first I was a little worried that it was going to be very slow, and boring, but the wonderful therapist soon realized that I wanted to do more.  I had to keep my heart rate under 140, but was allowed to do as much as I wanted under that number.

I ended up doing the treadmill, recumbent bike, squats, lunges and weights (bicep and tricep curls)
I am also not allowed to lift more than five pounds, so they were light.

I am hoping to finish up the rehab program at Dominican Hospital.   They can just transfer me there, when I get sent home.

All in all, I didn't feel too limited.  I really liked the bike, and the leg stuff - feel the burn!  I'm really glad that they kept track of my heart rate.  It let me do the maximum allowed without "over-doing it"

Ready To Rumble

Today I begin outpatient pulmonary rehab.  They asked Seth over the phone if I am able to walk for ten minutes.  Little do they know I walked around a mall for three hours last night, ha.  I'm imagining that it will go well.

We'll let you know...

Adventure

ADVENTURE

ad·ven·ture

ad·ven·ture [ \əd-ˈven-chər\ ]
a : an undertaking usually involving danger and unknown risks b : the encountering of risks

Adventure.  I think that word could safely sum up this past year for us.  It has been one wild, crazy, intense, scary, surreal ride for sure.  It has been a difficult, tough road to get to where I am right now.   Sometimes Seth and I just sit and talk about how bizarre things are and have been lately.  On the flip side, it may sound weird, but it is kind of fun.  Our lives are never dull!  It seems each day we have no clue what is in store for the next day, but we wake up and everyday brings something new.  We are living a sometimes rather difficult life, but we are really living.  

A few weeks ago, I had to get the last of my chest tubes pulled.  The chest tubes were about the size of a penny in diameter and went about six inches deep into my body.  Needless to say, getting them pulled is very uncomfortable, because it felt as if someone is ripping out my intestines.
I felt like a cowboy!  They came in, gave me a shot of dilaudid (modern day morphine) and then I just had to "bite the bullet" so to speak as they just ripped them out.  Those western movies, where they would take a swig of alcohol and just "go for it" kept popping into my head.  I keep joking that, I needed a piece of leather or a stick to bite down on.  Anyway, I ended up feeling slightly heroic after it was all said and done.

Maybe romanticizing about all that we have been through is just a coping mechanism, but we get amused imagining we are like pilgrims on a trail that few have tread on.

This year in particular I know very many CFers who passed away.  I lost a good friend, about two months ago.  She is in my thoughts and mind continually, and I am left feeling like a soldier in a war, and wondering why I am the one left standing.  She got accepted for a transplant a day before I did, but our lives took two very different turns.  Why?  I don't know.  I don't know why she is gone, and I am left standing.
(As a side note, she was a Christian, lived her life for the Lord, and I am confident that she is in heaven and much better off than me right now...)

Waiting on the transplant list was one of the hardest times in my life.  The risks before you are overwhelming at times.  The unknown is frightening, and all you can do is pray that your story turns out to be a success story.  But there is no way to know.  It embodies the definition of adventure.

As 2010 begins, and hopefully the worst is behind us, I am looking forward to safer and more enjoyable adventures.... maybe spelunking or white water rafting.....

A life with no adventure at all?  No thank you!  I wouldn't have it any other way......

Update and Progress

As Seth mentioned yesterday I had my weekly transplant follow up appointment. The frequency of my  clinic appointments will decrease over time, right now they are still once a week.  Everything is going well, as far as I know!  Very cool.  I got my sutures removed!  I was a little nervous about having to do that, after my last suture incident that was quite painful.  They came out easy and pain free though!  Very relieving.

My sleep has been so poor this week.  I was averaging about 3 hours a night (a side effect of prednisone)  I pretty much was going insane.  Thankfully, praise God, I slept a seven hour stretch last night.  It felt so great.  I think Seth is hoping I get more than seven hours a night though, as he is walking around in a daze.

Another awesome thing is that I got to end all of my antibiotics yesterday!  No more I.V.!  This is very exciting because now, as of yesterday,  I am completely free of every type of tube or anything.  Just back to skin and bones, for the first time in three weeks.  Ahhh... freedom!

One of my friends asked me yesterday if I was getting cabin fever.  I told her no and then went on about all of the things I had done that day.  Seth and I have been so busy.  Obviously I don't write every detail of everyday on here, but we are out and about constantly.  Probably we will be even more so now, since my I.V.s are done.  Also, I have been such a lucky girl to have been having just awesome friends come hang out this week and last week too.  Every day feels like a party -- haha.

This week my parents have dropped Levi off here twice, to hang out with us.  It's been really nice.  He likes the hometel.  The first thing he did when he saw it was run around to all of the light switches to figure out which switch turns on which lights.  After that, he looked around for secret passageways. Then after that he arranged the patio furniture so that him and I could take our drinks outside and drink together.  (He thinks that every time we drink anything we should sit on the patio)  So we sat on the patio and sipped our tea/juice box together.  I'm looking forward to all being together again at home.

Today we might head on down to Santa Cruz again and run errands.  Sometimes we don't really know why we still have to be up living here, but they have not given the go ahead to go home yet, so we just make day trips as needed.

That's it!  It feels wonderful to be making progress!  Pre - Transplant, I had to work very hard just to try and stay healthy, and kept declining anyways.  Being in a place now to actually have progress and improvement feels excellent.  I'm loving being busy and productive...

Fun Dips

A visit by an amazing friend...

Just Like That

Leah got her stitches out, finished her i.v.s and has two less other meds to deal with as of today! Lookin forward to seeing Levi soon. Stoked!

Off the Top

Our life is changed now.
Things we thought would always be the same, struggles we assumed we would always deal with
are now suddenly gone. Four hours a day of therapy and breathing treatments are suddenly unnecessary. We have gone from infection and disease ravaged lungs to healthy ones in a matter of hours. Why? I don't know, but I am so thankful. Apparently God has more for this family yet... I know there will always be struggles ahead - and we have been dealing with different ones each day - and we will always be fighting lung rejection - but it is amazing to be a part of this and to see God giving Leah a reprieve from the disease that had almost taken her from me twice this year. Each day is one of progressive revelation - realising more and more how our lives are and will be changed. At the same time it seems like I got the old Leah back! I see aspects of her personality that have been suppressed for years by her disease finally shining through again. It is amazing to see the support and love out there that I didn't even know existed from family and friends. It is amazing to imagine what our lives have in store for us. Right now our lives seem anything but normal, but it is an adventure and I am thankful to get to be a part of it.

Three Weeks!

Thank God for three weeks with Leah's new lungs!  So far they are working well with her body.

...And thank God she finally got more than three hours of sleep last night too!  This has been an issue probably brought on by the prednisone and we've been working on it daily.

We have been blessed to be able to hang out this week and last with some friends affected by CF.  A sweet time.  Thanks Lindsay, Casey and Hope!

Another appointment tomorrow; we'll see what the doctors think of us.

Gonna take a walk outside today
Gonna see what we can find today...