Great Progress

The new year has started off with a very busy couple of weeks.  Laura has had two weeks of almost back to back daily appointments.  These appointments ranged from anything from daily labs to a CT scan, pulmonary tests and another bronch this week.  A grueling couple of weeks.  The outcome of all those test was pretty positive. 

In the past I have discussed the FEV1 test which measures the volume of lung capacity.  The measure is based on the "expected percentage".  Last week Laura had her 2nd test since the transplant and crushed it at 107%.  The attending tech was shocked.  A really great number that is a direct reflection of her determination.  Walking the streets of SF, from the top of Russian Hill to the Top of Coit Tower has paid off.

In a December xray they found a build up of what was possibly water in the lung cavity.  After a recent ct scan, the fluid has partially diminished but appears to be a smaller collection of blood.  In the coming weeks Laura will go into to radiology and they will remove that fluid.  No one seems to be overly worried and rushing to make any appointments which is always a good sign.

The team did complete a bronch this week.  This is one of the most significant test because it can identify infections, stages of rejection and numerous other issues.  The results this week were mostly good, however they did find mold growing. The mold was actually growing on a sugar based wire that poked through.  Some of the wires that were used to close the chest plate and close her up are meant to dissolve and this one poked through.  Due to the fact that it is a sugar based wire mold grew out on it.  They will continue her on the Ampho drug a while longer to treat this.  

The Ampho treatment is 2 hours a day of inhailed medication. This is just one of the many treatments that must happen daily.  For those reading this as you approach you first transplant or are about to leave after your first transplant, set your expectation that you have hours of treatments daily.  Typically in the morning and the evening.  It may seem daunting but you will develop a rhythm.  It does limit your time to do anything else so just keep that in mind.

Laura is working to manage her blood sugar as it has been a bit more erratic. Blood sugars, blood pressure, kidney functions and other levels are consistently  being monitored and tweaked.  As she is on so many drugs there is balancing act that is always in play between her medication and how her body processes those medications. 

With all that having happened the doctors gave Laura the green light to go home! After almost 5 months out of the house Laura is now home.  Everyone is very very excited  Bear, our tiny King Charles Cav first saw Laura and started to growl but after smelling her went absolutely crazy.  Running in circles between her legs, jumping up and down.  So excited to see her again after such a long period of time.

Thank you all for everything.  It was a long haul for everyone.  Everyone was emotionally invested and there were some trying times.  The road ahead will have issues as the second transplant is always more complicated than the first but we know we have the support needed to push through.

I will continue to provide updates.  We are starting the process on establishing a non-profit and will be sure to share the details as they happen. Thank you again.  We could not have made it through this without #TeamLaura.

Cheers to all in the New Year!

Love,

The Zs

Happy New Year

2018 started out as planned and then took a turn.  We would not have been able to make it to this New Year without you all.  The journey this far has not been easy and it will still have many ups and downs but we know that we have the most amazing group of family and friends to support us and each other.

The support goes so much further.  It is amazing to hear stories of friends or friends or see some random person wearing the #teamlaura t-shirt.  I have people following the blog from 20+ countries. Incredible.  Facebook also just told me that our posts have over 8,000 loves.  That's alot of love.

We cannot thank you all enough for your thoughts, prayers, food (funny that almost ever dish dropped off had a bottle of something) and generousity.  You have given us your time, hearts and strength.  It made all of the difference. 

We hope you all have a safe and wonderful New Year with your friends and family.  Enjoy the time together.  Make a memory.  

Cheers!!!!
Love
The Z's  

A long overdue update

Happy Holidays!

We hope everyone is having a wonderful holiday season.  For the first time ever we did not travel for Christmas.  Not having to deal with traffic was a welcomed change.  We have spent the week in SF, enjoying the spirit of the city.  We cannot be with the masses but it is fun to see the little alleys of Russian Hill and look at the decorations throughout the neighborhood.

Apologies for the delayed post, the past couple weeks have been crazy, ending with labs on Christmas Eve, which was an adventure.  Laura has had a number of tests and we have been receiving the results and updates in a rolling fashion.  As we have discussed in previous posts, it appears the second transplant will be more complicated and have more bumps than the first.

After the last bronch and labs they concluded that Laura has a new Staph infection as well as a new fungus in the lungs.  They have prescribed a oral antibiotic (luckily not IV) to treat the Staph and we will see how well that works in the next couple of weeks.

As a standard post transplant procedure Laura does Ampho twice a day as a preventative measure against any fungus. This is a dry medication that we dissolve with sterile water and the dilute with more sterile water into a syringe. They will continue her on that treatment as well as add a new oral medication.  No one seems to be too alarmed about either of these infections but it does raise your nerves each time something new arises.  A bit unsettling.

The finals test results that we received were in regards to antibodies.  Antibodies have to do with Laura's B cells attacking the lungs. This was far more concerning than the staph and fungus.  There is a DSA blood test (donor-specific antibodies) to identify this. The doctor's say that this does happen and they can get it back under control by increasing the Prograf.  Increasing the Prograf then decreases Laura's already low immune system, increasing the risk of more infections.  Always a balancing act.  This will be followed closely in the coming weeks.  Having to absorb all this right before the holiday led to a delayed post.

Last week they did not do the procedure to drain the fluid in the lung cavity.  It was decided to wait until after the new year to see what happens.  In general she has had a much easier time managing the edema than after the first transplant.  Hopefully the fluid worked itself out of the system and if not they will address this in the coming weeks.

As for the day to day, we are walking and working out daily.  Laura can feel the infections in the lungs but they are not slowing her down.  Walking over Russian Hill or up Telegraph are common, charging hard.

We hope everyone has a wonderful new year.  Wish we could be with you all. We will raise a glass to you all as wonderful friends and family.  

CHEERS!










  

A tardy update

I hope everyone is embracing the holiday spirit.

This was a big week of testing with two significant test taking place.  The first was the FEV1 (this is the test that measures the capacity of the lungs).  Laura's completed the test at 82%, which is very very good for the first test.  As she build strength, the lungs will increase too and this number will increase.  Needless to say it is significantly better than 17%.

Laura also had a bronch and a CT scan this week.  The bronch was negative and showed nothing of interest, which is good.  The CT scan did show a build up of fluid in the space between the lungs and lung cavity.  Fluid builds up and is usually dispersed naturally.  In this case it is not going away so we will have a procedure on Thursday to drain the remaining fluid ( a few hundred milliliters). This will be an outpatient procedure and should only take a few hours.

All else is going well.  She is building strength and continuing to increase the distance she is walking.  

Thank you all for the support, meals and great holiday cards.

Happy Holidays
Cheers,
The Z's

Lots of tests

A big week of testing.  Today Laura had here first FEV1 test, this is the standard measure for lung capacity, and she blew an 82.  A great first number after the transplant.  I have not gone back through the blogs to see where she was before but the team was happy with the result.

The blood tests came back all within range and  her kidney numbers have come back into a normal range.  Given the amount of meds that she is and has been on monitoring and managing the kidney numbers is very important.

As for the exercise, Laura is crushing it. She walked 1.5+ miles yesterday, tackling the streets and hills of Russian Hill and North Beach.  With all of the exercise, the edema is well under control and we are approaching the end of any issues.

On the eve of Laura's birthday we actually made it out to eat in SF.  We were the first table to be seated (needed to avoid the crowds).

A few things to think about here.  This was the first time since early September that Laura ate outside of the hospital or the apt (last 10 days).  This was her first time in regular clothing (swelling, pain...etc. all made dressing beyond a hospital gown and sweats too much).  A great pre-bday outing to Don Pistos in North Beach.

Tomorrow is a bronch and then some well deserved relaxation.

Cheers!

Progress

It has been a good week.  Laura is making lots of progress in her walks and starting to build strength and endurance.  She is now up to over a 1/4 mile per walk and is active in the house.  This is also has a significant impact on the edema and helps to keep the swelling down. This recover has been a night and day different in that regard.

With the bronch they did find some infection and we will start to treat that immediately.  We are still waiting on the specifics but it will be oral antibiotics not IV and she will not be readmitted for this. Hopefully this is just a mild case and will react well to the meds.

The days are still filled with treatments.  2 hours on Ampho (one hour in the morning, one hour in the evening). Plus the other treatments to strengthen her lungs...etc.  All the work is paying off and her progress is good.  At clinic they were all very pleased with her progress.

There is another bronch next week, on her birthday (the birthday present everyone wants) and normal lab visits in the mornings.  After next week I believe the next bronch will be in January.  

Thank you again for the cards, calls, texts, comments...etc.

Cheers,

The Z's

The beginning of the long road to recovery

To start off, Happy Hanukkah to all of our friends and family!  As it is a holiday that highlights the light within us that has the ability to guide us. We appreciate all of the thoughts and prayers that have helped to guide us thus far. Chag Sameach from the Z's.

We are in recovery mode and it great but it is not easy.  Given that we have been fighting and managing for the last 70+ days in the hospital and another month+ before, there was an illusion that once out we can move on.  I know we did not think that but I think there was some unconscious process given what has been overcome things may get easier.  It will get easier and we are making progress. It is a different journey than before.  Very happy to be on this side of it. 

We knew what recover was and actually the edema has been far less severe than last time and over all right on track.  The pills are in the dozens, multiple times a day and the treatments are long and draining but Laura is crushing it.  

The incisions and the insertion points are all healing well.  I think I have figured out how not to have the dressing tape stick to itself. This is like the tape they use on NASCAR when a bumper falls off.  Water tight seal immediately.  As of today there was very little seepage for any of the wounds.

Exercise is a must.  Getting out this weekend in SF was terrific.  Laura is battling and getting stronger daily.  Little steps up the hills but she does get there. We are up to 100 yards or so, progressing daily.  

Building strength is a must and thus eating is critically important.  As we are back in our old hood we had a great meal from Trattoria Contadina, a great local favorite on Russian Hill.  Couple with ZA Pizza a few nights early we are making a carb comeback.

This week is another week of apts.  Laura has another Bronch and the possibility of having many of her sutures removed.  The actual incision for the transplant was glued from armpit to armpit so there are no sutures there. AMAZING.  The sutures that she had for her chest tubes and drainage are what I am referring to.

All in all progress is going well.  Hope you are all preparing for the holidays.  

Enjoy!