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!!

5th week, more progress and lots of walking

Another busy week of appointments in and out of the hospital but I am happy to say that Laura continues to progress.

Last week was a tipping point. Over a 5 day period the swelling decreased dramatically. She was dropping 5lbs a day in water weight for multiple days in a row. The multiple daily walks (uphill) as well as the Lasix made the difference. They took her off the Lasix because of the stress it places on the Kidneys. Her Kidney numbers are elevated but with increased fluids and continued walking the numbers should come back to normal ranges.

The days are still consumed with apts and treatments at the flat. Once the Ampho is finished (3 more weeks) that will open up 2 hours a day. Multiple daily doctors apts will also free up massive amounts of time.

We did have some check ups and for the most part all went well. The notable news is that her FEV1 lung function is up to 85%. The technician made her do the test 17 times because early on she had an FEV1 of 90%. I think it is obvious that after 10 times it would be hard to replicate. Not sure the 17th try was going to nail it. Frustrating but they mean well.

Another bronchoscopy was on the fun list this week. To make it even better the anesthesia did not work and Laura was awake for most of it. This time they did take a small biopsy to make sure everything there were no signs of rejection. The results are all good.

There have been moments of normalcy this week. They are few and far between but they are glimmers of what we hope is to come.

Tonight we went for a long walk and had a conversation throughout. We found a hidden gem of Golden Gate Park, The Shakespeare Garden that neither of us knew about. Lining the edges of the garden were memorial benches, we read ever memorial note on every bench, thankful that we were able to do so. After we went out to dinner. Then evening was spectacular!

Cheers,

A shared story

I thought I would share a story that blows my mind about how our journey has reached far beyond anything we could have ever imagined.

Laura was having a conversation with a close friend about one of her friends that lives outside the BayArea.  At a dinner party this week the friend in outside the BayArea was telling another person about how well Laura was doing.  Without mentioning Laura's name another person who did not know the other two interjected herself and asked if they were talking about Laura Zellmer.  She had been given Laura's name from a friend in Texas!  The friend in Texas did not know Laura or any direct friends but had been told about her via an email or a prayer chain.

Thousands of people have watch the documentary Breathe in Life has hand thousands of people watch it.   The Blog has been read over 25,000 times and who know how many people have read the updates on Facebook.   It is truly amazing.  

We have spoken with new friends that are going through a similar journey, we have heard from new friends that have gone through this part of the journey and have the lives back. And we have had great conversations with our old friends about how we will be able to do more together again.

Again this could not have happened without you all.  We live in a small town where most people know too much about each other. ;) In the case we would not have it any other way.  

Today at coffee I was introduced to a women who did not know me but knew our story.  Sort of a weird experience when someone you do not know can ask questions about your life.  In the end it is great and the genuine caring is meaningful.

FYI - +Porsche if you want in on this love, feel free!

Thank you again for the support it really is great.  We would not be doing as well without you all.

Love the 

Z's