Lungaversary!!!!

This time last year I was being wheeled into surgery for my transplant. It is still somewhat unfathomable to think of what a different life I am living compared with a year ago.  There are so many people, experiences and things that I am grateful for on this journey.

1) My donor and their family for giving me these beautiful, strong lungs! After waiting a year I can now write the family a letter and try to put into words how thankful I am for the greatest gift I will ever receive!  They can then choose whether or not they want to respond.  I really hope I can find out more about this person who gave me back my life.

2) Kevin-my rock! You held it all together for our family! You made me laugh, you let me cry in your arms during my breakdowns and you loved me even when there was so little left of the person you fell in love with.  So glad we have so many more adventures in this life together!!

3) Everett-my inspiration for fighting! I have almost made it through the first decade of your life and I plan to be there for many more!  You make me laugh every day, and I love watching the strong independent boy you are growing up to be. Love you to infinity!

4) Family-I never would have made it here without your love and support! I am so lucky to have such wonderful people who love me unconditionally!

5) Friends- Near and far, old and new I am blessed with the most amazing friends! We have a true village holding us up!

6) Independence!  I can drive, I can cook, I can take a shower, I can walk up a flight of stairs, I can walk anywhere I want to, I can do laundry, I can have 3 boys spend the night while Kevin is out of town and not be phased by it.

7) The mountains-not only being able to be at altitude, but while I am there skiing, paddle boarding, hiking, watching the sun shimmer on Lake Tahoe, catching snowflakes on my tongue, and watching Everett's utter joy playing in the snow.
                                 

8) Feeling strong and energized after exercise!

9) Food!  It is so nice to enjoy food again, to have cravings and to no longer have a tube in my stomach!

10) Tulips and daffodils in my front yard.  Kevin and Everett planted them for me several years ago and every spring they make me smile.

11) Amazing doctors and staff at UCSF and Kaiser!

12) Sleeping without coughing through the night.  Doing anything without coughing!

13) Being able to truly laugh again!

14) Being able to sing again, to Everett, in the shower and karaoke

15) Watching the sunset over the ocean

16) Returning all my oxygen supplies and donating my wheelchair

17) Everett's wonderful teachers and aides who gave him a safe, happy space to be during all the stress in his life.

18) Our supportive community!  There is definitely a reason so many people come back to Moraga!

19)Traveling!  I was so trapped in my house or the hospital and now I can't wait for all of our exciting upcoming 
trips!

20)Prayers-whether they came from loved ones or strangers I have felt all that amazing energy lifting me up!

Thank you for helping me get to my 1 year lungaversary!  I plan to celebrate many more!
If you haven't done so already please become an organ donor and encourage everyone you know to do the same!  You can completely change the course of another persons life by doing so!

Love,
Laura

6 months today!

It is incredible to think that at this point six months ago we were hours into the transplant, waiting for news.  Kids playing in the park always looking up the hill at the hospital prepared to sprint with news.

As we think back it sure seems like a long time ago.  Unsure why or if that is good but it does. The details of that day have not faded they are all as vivid now as they were then.  It just seems like that was a different life.

Life today is amazing.  Laura could not be doing any better, seriously could not be doing any better, her tests are through the roof. As we take small local trips they all have activities planned, paddle boarding, biking, hiking and food.  All simple things that most take for granted but were not even options.

Weekends now start early with flag football and then the rush to soccer.  A birthday party or basketball tryouts squeezed in for good measure. The chaos of kids and sports is in full swing and it is pretty great to do it as a family.

Six months post transplant is another milestone. One of many on the road map but a big one.  This one will enable us to travel a bit more in the Continental US which is very exciting. What ever that next trip is we know it will not involve letters to airlines to allow oxygen, letters to hotels to receive oxygen shipments, wheelchairs and a full piece of luggage with just supplies. The fact that we have options is and of itself pretty cool.

The comments, emails, cards and general kind words that are shared with us on a regular basis are terrific.  Those comments and your support are enabled us to achieve this milestone.  We do not take it for granted that we have the best support network possible.

Cheers

The Zs

A busy Summer

It has been a couple of months since the last post and from what I have been told, it is way over due.  My apologies.

What a summer!  To say our world has been turned upside down would be an understatement.  To say it has been for the good would also be an understatement. It has been amazing.  Laura is doing amazing. Everett is going great and everyone is happy!

If you were to meet Laura today you would have no idea what she has gone through in the past 5 months. She is back in full force with a big smile and vibrant laugh.

Since coming home in June she has been on a path of continued recovery and improvement. With each passing month she gains more independence.  From being able to exercise (hour+ a day), drive (oh to feel like you are 16 again) and actually do go out and enjoy life with friends and family.   Cooking is fun, food tastes good and the thought of activity is exciting.  

Her new normal could not be more different than it was. As an example today Everett had an 8 a.m. flag football game (a pick6 was in there), 2 o'clock basketball tryouts, overlapping with soccer and the normal errands. Drop E off at 6:30 and off to the city for dinner (with plans for her first cocktail!) Impossible to do one let alone all of them 6 months ago.  

As for that transplant thing, all is great.  Weekly blood draws are still a requirement and she still has a port to manage but that may be removed soon.  They did remove here g-tube as tube feeds are not necessary.  

The medical routine still consists of monthly clinic visits with both the CF and the transplant team.  A means of measurement to test is based on an predicted status.  As an example they may predict here lung function to be at 95%  if she tested at 97% they would consider her 102% of predicted.  In the last test Laura was 100%+ of predicted on every test. The progress she has made has been as good as anyone could ever have been imagined.

As we move forward, they will continue to monitor drug saturation levels and continue to optimize her meds.  Today she is taking 50+ pills a day.  As time goes on that number will decrease a bit with the optimization. She has a solid routine now and it is just part of her day.  The changes in meds are still making managing her blood sugars hard but that too should become more regular with time. All in all medically speaking she is doing great.

We won the lottery of life.  Not a day goes by that we do not appreciate what we have been given.  It is fun to watch the reactions on people faces who do not see Laura often or have not seen her since the transplant.  The amazement, excitement and joy in their expressions are awesome.  All of you were as invested in this as we are and to celebrate the success together is great.

As always a huge thanks to everyone for their love and support.

Hope you are all well. Enjoy life!

Cheers

KTVU Story

Local KTVU did a nice piece on Laura and our story.  The link is here for all you share.

http://www.ktvu.com/news/moment-of-zen/150247866-story

Cheers,

Kevin

Home Coming Soon

A busy few weeks.  It is amazing to see the progress that Laura has made.  Almost unbelievable at times.  Walking miles a day, up hills and talking throughout the walk/hike. Not once has she stop to catch her breath.

This week was the final week of all inhaled medications. Yeah!!!  Ampho, Cayston and the bunch all done.  Some will rotate in on an every other month basis but for now Laura has over 3 hours of new free time.

There are other medications that they are slowing eliminating as she progresses.  The number of pills that she takes daily is still massive but the continued decrease is welcomed.

We also found out this week that her 4 hour infusion sessions were no longer needed and those appointments were also eliminated.  Lost of time coming back her way.

We are now in house prep mode for her home coming. Apria picked up 13 oxygen tanks, 2 condensers, feeding pumps, poles and a bunch of other stuff.  

It is amazing what has been done to prep the house:

- HVAC cleaning

- Windows inside and out

- New Screens

- Pressure wash and scrub the exterior of the house

- EVERYTHING washed

- New pillows (ALL of them)

- Scrub everything

 Good times :)

Tomorrow we have labs and then with some luck our new normal starts.  We will be at home as a family for the first time in months.   We will be a mobile family again, for the first time in years.  We still have restrictions on driving and travel but we can be very mobile in the bay area.  Over time our radius will expand and after a year we will be set free to travel as we please.

We know that there will be ups and downs and hospital stays will occasionally happen. That will be part of our new norm.  But we had ups and downs before and we had more than our share of hospital stays. But now in between we get to live. 

Your support is amazing!  We could not have made it this far without you all.  

Love  
The Zs

Playoffs in Moraga

We have had a good week.  Laura was able to come to Everett's playoff game and was welcome by the Moraga Reds with custom "Laura Strong" Eye Black.

Everett had a customized "Mom Strong" going on with some pregame attitude.  With Laura in the crowd the team did there part and finished with a Strong win.

More to come soon!

Cheers

A good report card

Today was a good clinic day.  Not only were Laura's numbers good, we didn't have to wait for 45 minutes.

FEV1, the lung function test, came in today at 88%.  Lungs sound clear and are working very well.   It is really incredible.  Kidney function came down again, so close to be inline.  After any surgery, especially transplants, there is some kidney damage and thus the old baseline may not be the new.  No one is worried about her kidneys at this point.   All of the other measures came in as they should.  A good clinic day.

Laura is now walking 3+ miles on any given day.  Big days, now include hills and yesterday even some trails.  SF is amazing.  There are hidden gems everywhere.  Yesterdays hike was in the Interior Greenbelt.  A banana belt forest 100 yards from UCSF and Parnassus.

We need to focus on weight gain for the next few weeks.  Laura has cravings and an appetite again, this is the first time in years that food is fun.  With the ramp in cardio the calories need to follow.  This will be one of the big hurdles prior to a release.   Once she does this and maintains, they will also remove her G-tube.  This will be a very welcomed change.

Thanks again for the notes, cards and food.

Cheers