Dr. Apt and One Republic

Well we are almost done with our 3rd week on the list.  The ring of the phone no longer makes our hearts stop and we are getting back into our normal routine.  Laura did have a Dr. Apt and her lung capacity is now 26%.   Not a surprise but always a bit unnerving to hear.  Go for a walk and breathe though a straw, challenging to say the least.

All candidates have to be very aware of their weight.  A patient may lose 15% of their body weight during/post surgery, so they have to maintain the proper weight prior.  Laura has always had a tough go at this and the only way it has been possible is via tube feeds.  It is hard and has side effects but she is diligent and the effects are great. She is now up to ... (like I would say) The doctors are happy :).  

No big tests in the coming weeks, so back to the wait.  Many of you have asked if you could share the link to the documentary, please do.  We have learned that many co-workers and friends of friends have relatives or friends that have CF.  Laura and Amy wanted to make the documentary show parents and young adults with CF that a  full life with CF is possible. Share away!

Now onto pop music.  Obviously a logical transition.

As I no longer wait for Friday Night Videos or watch videos for that matter, I missed One Republic's latest.  Laura asked if I had heard the song I Lived.  By title I was not aware of the song.  After hearing the track, I was aware of the song but it was usually heard in a car of kids in route to some practice. I had not listen to the lyrics or seen the video.

Laura suggested that we watch the video, so Everett, Laura and I did that.  I have to give One Republic full props for the theme of the video.  I do not want to say too much more, so the link below is to their video.  AWESOME!

I Lived - One Republic

If anyone knows the band, we would love to know the back story.

Thank you again for all of the support, well wishes, prayers and thoughts. It is amazing how lucky we our to have you all.

Cheers,

Breathe in Life - The Documentary

Breath in Life one mother's journey

As many of you are aware over the past 10 years Laura and Amy worked on a documentary about CF.  Throughout the years the focused changed and the film became a short story geared to our son Everett.  The film debuted at the California Independent Film Festival in 2014 and was nominated for Best Documentary Short.  

We hope you enjoy the film.

We Made The List!

Hello everyone.

Given all that is in the works we wanted to create a blog that would allow us to communicate throughout the transplant process with our friends and family.  We also wanted to allow others that may be in similar situations to understand our journey and hopefully that will make their journey easier and less scary.  

So that said…We Made The List!

Laura was officially placed on the list for a double lung transplant last week.  It was the culmination of 5 months of rigorous testing.  She had to endure every test you can image. The reason for these tests is to make sure that she has no other diseases that could possible affect her recovery after the surgery.  She was cleared and that was a major hurdle.

Now that she is on the list we hurry up and wait.  We have our phones ready 24/7 and answer every call waiting for UCSF to tell us that they have a matching organ en route.  Throughout this process we must stay within a 2 hour commute of the hospital and be ready to get there ASAP.

Lungs are given to people on the list based on their Lung Allocation Score (LAS), along with matches for lung cavity size, blood type, and antibodies. Laura scored high on the list as an outpatient (someone not hospitalized while waiting). Which means we could receive a call at anytime.  Based on her score a reasonable expectation for a transplant is within the next 3 - 6 months.

Once we do receive the call the adventure begins.  We recently learned that about 20% of the time the call is a “dry run”.  This means that between the time they harvested the organ and prior to the transplant something happened to the organ and it is no longer considered good enough to transplant.  We can only image the emotional rollercoaster this puts you on but much better to be safe.  This experience happened to one gentlemen 5 times.  So you may see a post that says we are on the way and then a few hours later hear something different.

When the transplant does happen, Laura will be in surgery for 8-12 hours.   (If you are truly interesting in the surgery, Youtube has some interesting videos.)   Once the surgery is complete, she will be in ICU for a week and then the hospital for a second week.  Hospitalization could be extended based on complication but 2-4 weeks is standard.

Within 24 hours of the surgery they will have Laura up and walking and that starts rehab. Pretty incredible.  Once she is ready to leave the hospital we will need to live in the city for the next 6-12 weeks.  This is where we need some help.  If anyone knows of a rental unit (1 or 2 br, kitchenette –in law type place) please let us know.  We really can’t use an extra room as the environment has to be as controlled as possible.  We are speaking with the hotels, looking at AirBnB….etc. but it is difficult since we do not know what the timing is.  If you have suggestions just send me an email.  The reason for moving to the city is to be close to the hospital as there are daily visits to assess her recovery, watch for rejection, infection and learn about all of the new meds.

As you can image, emotions are everywhere.  It is time for this to happen but it is one of the most complex surgeries to be done and that is scary. UCSF and our team is #1 is the U.S. we could not be in better hands.  We also have all of you as an amazing support group that has helped us get this far. Thank you thank you thank you.  Our appreciation cannot be expressed enough.

So now we can all wait together.  As soon as we hear, we will let you know.  As things change and events happen we will post them to this blog as well.   For those of you who have asked about the movie it will be posted here within the week.  Feel free to share.

Cheers