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

Good Appointments and progress

Another week of appointments, some of which happened on time.  

The team is excited about Laura's progress.  The swelling is finally gone and she actually gained some weight last night. Going into the transplant, we were told that she could lose as much as 15% of her total weight.  At 110 wet that was a concern.  The swelling threw off our expectations and only recently have we seen her weight bottom out.  She never fell below 100 and with her new found appetite and work outs, she should be able to gain weight and increase her muscle mass quickly.

The core numbers are all coming back in line.  Kidneys are a bit elevated but moving in the right direction.  Iron is still low and thus anemic.  This will likely be an ongoing issue which is not a big surprise.  Hemoglobin was ok but still need improvement.  As the body strengthens this should correct itself too.

The best news was that Laura has tested negative two weeks in a row for Pseudomonas. Pseudomonas is a bacteria that is almost everywhere and most healthy people have or can be carries.  For those with diseases such as CF it is serious and can be deadly.  The long breathing treatments Laura has had to endure twice a day since the transplant and will continue for another 2+ weeks we being done to kill any remaining bacteria she may have in her passage ways.  The new lungs are clean and they want to keep them that way.  Really good news.

As far as the 50+ pills, they are starting to figure out most of the saturation levels.  There are multiple calls per week increasing a dosage based on how her body is absorbing the drugs. The Prograf (anti- rejection drug) has been the most difficult and may be for sometime.  

Google Hangouts has been a tremendous help with Everett. He can call and video chat on his device at will. That has provided a great deal of comfort and security.  We have been able to stream his baseball games as well.  Laura was able to see his first home run live.  That is pretty cool.

All in all everything is good. When you see Laura you will see a new person.  Through it all her smile never left but you will see that there is something more behind it now.  We know we are very lucky.  This could have gone in numerous other directions and at times we thought it may.  We are very thankful for where we are at.  It can't be said enough that none of this is possible without TEAM Z.  The best support group of friends and family possible.

Cheers!

Family day in SF.

Everett was not a huge fan of coming to the city on Saturdays in the beginning because the activity was slow.  That had changed with Laura's great progress.

Giorgio's for Dinner, a walk on Clement and then a sunset hike at the Sutro Baths.  Downhill, uphill Laura made it with no issues!!