Out of ICU

We are out of ICU. As great as the team was it is nice to be in a normal room with a view. 

The progress that she has made has been a huge boost to her spirits.  On Friday when she entered ICU we where at a low and any effort was hard.  Although she is not sprinting down the corridors today is much better. 

Her blood gases remain about the same but because they have been constant the concern has diminished a bit.  They are skill keeping a watchful eye on the numbers and unfortunately the test to monitor that number is similar to a needle and a pincushion.  Her arm in this case being the pincushion.

Over the past couple of days Laura had a repeat a number of tests that are required as part of being on the transplant list. Yesterday's test was the 6 minute walk.  As it sounds you are measured on the distance you can walk in 6 min. She covered a sum total of 300'.   As a friend said. " remember the turtle won the race".  Solid! 

The results of that test as well as other have increased Laura's LAS, Lung Allocation Score, to 60.  This is good news and really puts us in a strong position. So we are hopeful.

Thank you for all the emails, text, video calls and more.  We have received some great messages from old friends and it really does help. So thank you all very much for all of your efforts to keep us going.

We love you all.

The Zs

Another ICU stay

Over the past few weeks, Laura has slowly felt worse and worse.  We were unsure of why, maybe a cold or just tired. Last Wednesday she went onto new oral antibiotic hoping that it would make an impact.  

As of Friday progress with slow so the decision was made to go back on IV antibiotics.  While at the infusion suite the nurses noticed Laura's extremely labored breathing, contacted her doctors and then had he rushed to the ER. There was some concern that she may have had a collapse lung (which it was not) and thus the push to the ER.  

While in the ER and through continuous conversations with the UCSF team, it was decided that Laura should be admitted into ICU. So Friday evening at 2 a.m. we entered the ICU. 

Since Friday it was noticed that her (blood gases) Carbon Dioxide numbers where very high. This number represents the about of Carbon Dioxide in your blood from breathing.  Most of us can exhale and work this out but when your lung function is in the low 20% range it becomes hard.  This is also a complication of being on oxygen 24/7. In the end Laura was at 68. The average number is 25-35.

Over the weekend UCSF became concerned that if she continues downward and a pair of lungs became available her condition would prevent her from being transported from Oakland Kaiser to UCSF.  Thus a late night move last night to UCSF ICU was made.

After 4 days in ICU and 4 days on IV antibiotics, Laura had a decent day today.  Her blood gases have decreased to under 60 and hopefully continue to decrease further.  She has been on tube feed since Friday but today had 2 solid meals. All progress in the right direction.  With some luck she will be out of ICU in the next 48 hours and into a regular room that is a bit quieter and allows for significantly more sleep.

The bright side to all of this is that her lung allocation score will go up and hopefully the wait list is shortened.

It has to be said that we have the BEST teams available. Both Kaiser and UCSF are world class.  They listen to Laura and ask smart questions.  The teams are funny, supportive and truly caring.  We can not thank you all enough.

As we move through the week, we will keep you informed and up to date on her progress as often as possible.  As also thank you for the support and love.

We hope you are all well.

Cheers and Love,

The Zs

A busy start to the year.

The start of the year has been crazy.  We have had 1 dry run and 2 calls that involved high risk donors in the first 2 months of the year.  A high risk donor is categorize as a donor that may have done intravenous drugs, prostitution or other "high risk" activities. Both of ours were intravenous drug use.

There are a number of risks from this type of donor but the main risks are HIV and HepC. We did a great deal of research and were provided some great links by friends in the CF Community.  A few studies showed that patients with high risk donor organs actually did better than normal donors in recover and over time. It is thought that this is due to the younger age of the donors.  Another finding had stats on HIV transmission and showed only 1 case in 20 years from a lung transplant.

In both cases the transplant coordinators called and provided information far in advance of the normal process to ask about our interest in the possibility of a high risk patient. From there they go through the screening process and evaluate the opportunity.  In both cases they lungs were not good enough and were not even an option.  Needless to say we are hoping for a strong non high risk donor.

Having 3 calls in such close proximity is great and shows we are in a strong position on the list.  At the same time it is a roller coaster and after each pass you feel dejected and think how many more will it take. 

This past week included a check up appointment and general touch base on the other issues that arise when you have an organ failing.  Since she is hunched over coughing so much she has bruised her elbows from the continuous pressure put on them while coughing causing bursitis. This is build up of fluids in the bursa at the end of the elbow.  

Her lack of lung capacity has made it hard for her diaphragm to function properly. This ends up as change in her posture that requires her to prop her upper body up. Hopefully with ice and a change in position the pain and swelling will diminish.

As for lung function she was at 23%.  In December she was at 25%, and January was 22%.  The continued degradation is not a surprise.  Laura is working extremely hard on a daily basis to walk on the treadmill or up and down the street.  The continued effort to gain strength is needed for the recovery but becomes harder as each week passes.

There are other issues such as Anemia that have arisen due to a lack of Iron.  Makes complete sense when you think about how red blood cells carry oxygen and she does not have enough.  More wonderful effects.

As we look back at the blog it seems unreal that we have been on the list for 10 months.  When we first made the list the expectation was set a 3-6 months.  Obviously you hear 3 months not 6 and are excited.  The emotional roller coaster and the constant unknown does make for trying days.  Who knew that every ESPN 30 for 30 was a tearjerker.  The only option is to hunker down and know that we have it so much better than many others in similar positions.  

We can not thank you all enough for the support.  It really does make this possible.  We hope that we will be in the city soon working through recovery and enjoying the second phase of life.

We hope you are all well.

It will have to be the 4th time

Well another dry run.   

The circumstances for today were a bit different from the past.  The donor was a younger person who was on life-support but still had brain function.  In most cases the donor has no brain function and once taken off life support they can harvest the organs.  In this case, once the donor was taken off life support they needed to wait for the patient to die. The patient has not past and the doctors are concerned that the lungs will go through too much stress and thus call it off.

We will go home this evening and wait again for the phone to ring.

Thank you all for the support.  You are all amazing!!!

Love the Zs

3rd Time may be a charm

Hello all. As we came home from a sunny baseball practice we arrived to Laura on the phone with UCSF. Unlike past visits this was super stat and we were told to come to the hospital ASAP.

10 minutes ago Laura went into surgery. There is still a chance that this ends up a dry run but we are now farther along than ever before.

Thank you all for the support thus far. We could not have made it with out you. I will continue to keep you all up to speed as we know more.

Happy Holidays to all.   

Cutting to the chase, we are back on the list!

After a month on the new heart medication, Laura went back for another round of tests.  The goal was for her heart to increase in strength and the new medication should have promoted that change.   The results of the tests were flat. No increase in function but no decrease either.  Given the results the next step was to increase the dosage and wait another month and then test again.  

Last week Laura meet with the head of Cardiovascular at UCSF for a number of tests. His thoughts are that the heart is strong enough to endure a lung transplant and that it will thrive will more oxygen from new lungs. Great news.

They are going to make some changes to current meds and look at how they can manage Laura's diabetes, believing that that too could help her heart. 

So now we wait again.  We can't thank you all enough for your thoughts, prayers and well wishes.  The little things that are left at the house, help with Everett and in general positive support is unbelievable.  Many in our situation do not have this support and it is hard to imagine going through this alone.

We hope you and your families have a wonderful Christmas/Holiday and glorious New Year celebrations. Wishing you all the best in 2016!  

Love the Z's

Another bump in the road

Time for sharing :)

While at the hospital for Dry-Run 2 the doctors had some concern about a previous echocardiogram.  The results showed some deterioration of Laura's heart performance.  After speaking to the doctors at UCSF and while we where there, Laura completed another normal echocardiogram as well as a thoracic echocardiogram. Given the size of Laura's lungs and their condition it was difficult to determine any definitive results from those test.  The next step, more tests.

Last week we went back to the hospital and Laura had a MUGA scan. A MUGA scan is a multigated acquisition scan that creates video and still images of the ventricles to check whether they are pumping blood properly. She also had a left and right heart catheterization procedure to view inside the heart.  The results of theses test were conclusive.  

The good news is she has no blockages and the heart is clean. She has however lost some function of the heart and is classified as mild to moderate degradation of function.  This resulted in her being de-activated from the transplant list. A tough mental blow.  After 2 dry runs we thought we were close and this felt like a huge step backward.  

The next step is to start a set of beta blockers, Carvedilol and Losartan to help improve the pumping function of the heart.  Normally they re-test 2-3 months after starting the drugs, but in Laura's case they will do another echo in 1 month, to try to get her back on the transplant list as soon as possible. 

Beyond this Laura has felt pretty poor, coughing for the first 4-5 hours of each day and will go back on IV antibiotics tomorrow.  With the ORKAMBI it has been almost 5 months since she was last on IV, so her body has had sometime to recover and hopefully the results will be longer lasting and help control the sputum production.  

The typical route for IV is 3 weeks and then she generally feels better for a period after. Since this is the first time while on ORKAMBI it will be interesting to see how well it works and if the benefits are longer lasting.

As always thank you for all of the notes and positive thoughts.  Hope you are all well.