A day of testing!

First off, thank you all for the amazing thoughts, actions, prayers... we accept it all with massive appreciation.  It really does make a difference.

Today we had appointments with our normal transplant team as well as a meeting with the transplant surgical team. 

The meeting with the surgeon was a review of Laura's medical history since the first transplant.  This is the final step to hopefully being on the list.  Since Laura was a stellar patient in the first go around the doctors saw no reason that she should not be placed on the list.  Hopefully by weeks end we will be back on the list for re-transplant.

The first meeting with the transplant team discussed her current condition and the continued drop in lung function.  Today she was at 26%, a 4% drop in less than two weeks.  This is very concerning because she needs to be stable to receive a transplant.  After another CT scan today showed pictures that were not good, they admitted Laura into UCSF.  Tonight will be a sleepless night for her as they start her on new IV antibiotics to address the current lung infection and try to control the continued decline.

Tomorrow will entail another Bronchoscopy and biopsies of the nodules that they saw in the scan.  Her last biopsy showed pseudomonas and they have been treating her for that but it is obviously not effective enough.

As we learn more we will keep you informed. 

Thank you again for all the well wishes.

Cheers,

The Z's

A surprise happening

I have said this before but it really can't be reiterated enough.  We have the most amazing support network.  NOTHING is too much to ask and when we don't ask people take it upon themselves to do amazing things.

Here is the image and link to retail store for #teamlaura. A friend new we had discussed starting a foundation to help other transplant patients that are not as fortunate as we are.  They went on their own to design t-shirts for all sizes and sell them to raise money. AMAZING! 

We can't thank them enough.  We are excited to help other as they move through their journeys.

Cheers,

The Z's

We're Back!

It has been some time since we last made a post.  The last post was Laura’s first Lungaversary in March of ’17 and that seems like a long time ago.  We celebrated year number two a few months ago and all has been very good until recently.

The backstory. In January Laura’s lung function decreased a little bit but was still at incredible levels. Since then she spent time being very active, snow skiing and paddle boarding in Tahoe with no issues.

At her June checkup, her Lung function was at 90% and her doctors were concerned with the decrease from her previous levels.  At this point we started testing to identify the cause(s) of that decrease. In August, the number had decreased to 56% and it was apparent that something was very wrong.  Spending time at elevation at Lake Tahoe was not a significant problem in June and July but when back in Tahoe for Labor Day weekend and she had to have oxygen 24/7 and was not able to be active.

One week later while at a checkup we found out her lung capacity was at 30%.  At this point she were admitted in to UCSF and placed on 24/7 oxygen.  Here resting oxygen saturation levels were below 90 without any supplemental air. The doctors were very concerned.

The doctors have been trying to understand what was going on for the past couple of months.  Was it an infection, chronic rejection, acute rejection a combination of these or something else?  Two weeks ago, while in the hospital we were told that it was chronic rejection.  Acute rejection has the possibility of being treated and possibilities of either maintaining or regaining lost lung function.  Chronic rejection means that the lungs are failing and there is no cure.

Over the past 4 weeks we have been doing a procedure call Photopheresis two times a week.  The short, no clinical, description is that twice a week Laura has a significant amount of her blood removed and that blood is chemical treated, irradiated with light and then placed back into her system. All in hopes of the body not rejecting the lungs. It is a 4-hour+ process which takes its toll.

Photopheresis was the only possible treatment for rejection.  The goal was not to reverse the decline, that is not possible, but to diminish the rate at which she is declining.  Given the results thus far it does not appear to have the desired effect.

All of that coupled with a blood transfusion and dozens of other tests brings us up to date on the past 4 weeks or so.

On Tuesday we will meet with the transplant surgical team.  This meeting coupled with some signatures will be the last steps toward placement on the list for re-transplant.  It is not what we expected and if ask in April or May was this in our minds we would have thought nothing is further away. 

The decline has been brutal. Her mobility is very limited and will be in a wheelchair going forward. The pace at which this has happened and to the degree has been tough.  Last time we had years of a gradual decline and that time allowed us to mentally prepare, this has come as a shock.  Based on her quality of life and the difficulty to breath, we know now need to be on the list.

For some this is all new news. I apologize for not making in more personal with a call or email. For those who have known, thank you for all the support.  As I have said before, we would never have made it through the first time without our tribe and you are all loved and appreciated. 

As news happens I will keep the blog updated.

Cheers,

The Z’s

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