OUT OF ICU!!

We are out of ICU.  Laura's progress has been awesome and given it they moved her to the floor today.   As many of you know the worst place to recover is in the ICU, constant beeping sounds, horrific noises and an line of ongoing staff checking in.  All that said, the team at ICC 10 are on their game. 

Now that we are out of the ICU the therapy and teaching is starting to happen.  Laura has adapted well to swallowing and is now able to eat solid foods but is still learning how to swallow.  She has been focusing on soft foods such as oatmeal and scrabbled eggs but today branched out for something more challenging. What for it......BACON! A solid start to a new life always begins with a couple strips of bacon. MMMMM 

Along with learning how to swallow she is learning how to breathe.  Given the state of her old lungs and the fact that the lower lobes had no capacity for air, her diaphragm was not working while breathing.  She has to relearn what muscles to use at the different stages of breathing.  

We also received our list of meds to learn.  25+ new meds will be required daily.  These pills range from vitamins to anti-rejection drugs and steroids.  Lots to learn quickly. 

She continues to be diligent in her breathing therapy and is excited about her walks. She is now over 500' at a time, walking 4-5 times a day.  

The move to the floor was late and wiped her out.  She is finally resting and hopefully will be able to start sleep more in the coming week.  Evening breathing treatments and therapy will start soon then back at it again in the a.m.

More to come.  

Cheers

Through Day 3

Last night was the first bit of pain.   Bit may be a lesser word than needed.  The team was great about changing the meds and making sure she was comfortable.  It is amazing that thus far she has had very little pain at all.  A 30"+ incision and she has been a 1 out of 10 on the pain scale.  Given the pain and the efforts to remedy that it was night the best night of sleep.  

Each day starts with a bronchoscopy, such a treat to wake up to in the morning. She says it is actually interesting to see where the new lungs are attached.  The numbing process prior is more painful than the bronchoscopy itself.  She will receive one each day for the first 5 days and then it will happen less and less frequently.  

The day itself was much much better.  Two of the four drainage tubes where removed. These tubes are the cause of much of the pain so the removal is a great thing.The central line from her neck removed and her catheter were also removed today. These are all signs that the healing process is progressing well.

She is crushing the walks.  5 walks today for 300'+ each time.  They would be happy if she completed 3 laps at 150' so the team is thrilled.  The entire ICU is so encouraging, it is really great.  Since she is hooked up to fewer tube she has been able to sport here new gowns from Annie and Isabel. Beyond the fashion forward look in the ICU they are much more comfortable than the standard issue.  Thank you Selena and Anna!!!!!

At 9:50 they are starting the final round of breathing treatments.  Some of the treats such as albuterol and hypertonic saline are old hat. Some that focus on the prevention of infection, such as the anti-fungal treatments are new.  Lots to learn for the new schedule. They are continuing to do the percussion treatments, which literally a speaker with a handle and the place it on her back to help clear the lungs.  All the time that are parents said turn down the bass we were just helping clear our passage ways. :) 

Thank you everyone for the housing assistance.  Lots of good leads.  Everett thought a suite at the St.Regis would work.  He will surely be disappointed.

I had to go home today to gather some supplies and in the process saw a number of friends. It is amazing how great our little town is.  People honking, pulling over to give a hug, little kids fired up that Laura had a transplant. This journey has taken the village, so appreciative of the support and love.

Cheers,

The Zs

Day 2

Another great day. Laura went for 3 walks 2 of which were without oxygen. Throughout both walks without oxygen her oxygen sat was 99 or 100. Amazing! I really can't remember walks without oxygen.

PT is full bore now and Laura is on her game. Hopefully we will be out of ICU by the end of the week.

We have started the rental search. Thank you so much for the recommendations. With luck we will find a place in the coming weeks.

Cheers

The Zs

End of Day One

A great first day.  Laura was a trooper and did a great job. She ended the day with a good walk to take gaze at the ocean and the bay.  Great views from the 10th floor at UCSF!

The entire team has been very impressed with her focus and determination.   They have managed her pain extremely well and she has been very comfortable all things considered.

The process is day to day and we understand that tomorrow may not be as good.  I think today was a great mental win for her.  She did so much work to get here. The PT and other therapy that was proactive, the slow 20 min treadmill walks are paying off.

She is now on the path for 3 walks a day and lung exercises hourly.  CF patients are so diligent in their lives prior to transplant that none of the staff are concerned about her doing the work.

E made a few short appearances throughout the day and is in good spirits.  A few of his friends and his cousins made a surprise appearance and took him to the park yesterday and that made his day.  This evening he and his aunt Kris had a great time cooking and baking.  A lot to manage at 8 but everyone is helping him get through this.

Thanks again for all the support.

Cheers,

The Zs

Day One

Laura had a good night.  The team is very happy about her progress and continues to be amazed by how well she is doing. As you can see she looks great, a bit swollen but not nearly as much as you would think given the procedure.

This morning they placed the epidural and she is no longer intubated.  She was on the full oxygen mask for the first 4 hours after the removal and is now breathing with a normal cannula.  Amazing.  Over the next week she will use oxygen less and less. We were able to speak for a short bit and she is in great spirits. (Meds may have something to do with that).

The next week is about recovery.  Guest visits will be on hold for the next few days as her immune system has been broken down to counter rejection.  She is excited to speak and see everyone soon.  

The plan for the remainder of the day is rest and to take a walk in the afternoon.  More to come.  Thanks again for everything.

Cheers,

The Zs

Success!

I just spoke to the surgeon and the surgery was a huge success!!   The team is extremely happy with the outcome. There were no complications and it was said it went as smoothly as possible.  

Thank you again for all of the support.  The emails, txts, post...etc. have been great motivators.  Can't thank you enough.  

Love the Zs

It is a go

Hello everyone. 

It has been a long 9 days in ICU and the hospital.  Laura has been progressing and while in the hospital was tested and tested.  The results where good in the sense that her LAS was raised to 60.  A great number.

Yesterday we were notified that there was a donor waiting and that Laura was a go.  This person was young and the doctors thought it was a good fit.  Timing was TBD and we started the waiting game.  There were concerns that one of the lungs may not be perfect so we were managing our hopes.  At 9 a.m. this morning the head surgeon told us that they had new donor that was 1/2 the age of the previous donor and had great lungs.  The surgery would be a go.

Everett and I just walked Laura down and she is now in the OR.  The surgery is expected to last 8 or so hours.  At some point they will call to provide an update. As I learn more I will send update and share new ASAP.

It was on Easter in 2003 I proposed to Laura and she thought that today would be the day a transplant happened.

Thank you all for the love, thoughts and encouragement.

XOXO 
The Zs

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.