A better July

Hello friends,

After a tough June we finished the month ending IV antibiotics and entered July with hope. After IV there is usually a window of better lung function and easier days.  This was the case and was a great advantage as Laura started Pulmonary Rehab.  

Laura entered John Muir's Pulmonary Rehab program with some hesitation and skepticism but with an amazing team the experience and results have been good.  The rehab is 3 days a week and ranges from 3-4 hours.  It is not easy but the effort has increased Laura's strength and endurance, both needed for the transplant.  Thank you to the team at John Muir for all your encouragement and hard work.

We also had a check-in with the UCSF team.  Laura's oxygen flow has increased and thus her transplant number increased as well.  Again, there are number of factors that go into the number but the increase in oxygen to 6 liters per min has elevated her score to 47.3.   The doctors say we are in the zone and should be ready for a call at any moment.  We are ready and waiting.

The John Muir team recommended a new treatment call the Vibralung Acoustical Percussor.  This is a crazy acoustical inhaler that splices sputum from the lungs.  It is house/techno meets health.  Here is a view  If you have not guessed Laura is below the average age in ALL rehab classes.

Toward the end of the month we also met with the team at Kaiser for the normal checkup. The results were ok, lung function is still at 26%.  No decrease is great news!  We did learn that Laura qualified for Orkambi.  Orkambi is a combination of Kalydeco (which is a miracle drug that can make CF disappear in younger patients) and lumacaftor.  The goal of both is to make the CF gene disappear.  Pretty amazing work by the bio-geniuses.  We do not have any expectations that Orkambi will show drastic improvements but hope for a slight increase in lung capacity. 

As we enter into August we hope for the call soon and look forward to celebrating Everett's 8th birthday.

I can't say enough about the effect of your thoughts, prayers, emails, txts and calls.  It is really great to hear from all of you and it makes a difference.  We have been taken completely by surprise on the reach of our story.  There are a number of people that are one degree away and share a very similar CF journey.  The blog and video have exceeded 8,000 people in reach in 35+ countries.  Knowing that you have that many people in our corner makes us feel very blessed.

For our local support network, you are amazing. We just can't say enough.

Enjoy the last weeks of summer and hope to post something soon.

Love

The Z's