First Days Out

As good as it is not to be in the hospital we are now realizing how good our team was. While in the hospital Laura's pain was minimal as was the nausea and swelling.  Those are fond memories and are no longer the case.  

To say Laura is swollen is an understatement. The fact that she is so swollen and the skin is so tight is the cause of significant pain.  The doctors have prescribed a diuretic called Lasix that will hopefully start working soon. This should increase the amount of fluid that exits her body. If this edema continues and is not showing significant signs of diminishing by Tuesday they will readmit her and insert new chest tubes (smaller than before) to relieve the fluid.  

This morning was our first day of out patient doctor appointments. Today we had a CT scan which was the fastest appointment EVER as well as appointments with the lung function team and the pulmonologist.  The pulmonologist assisted with the change in meds to decrease the edema and was super supportive of where we are in the recovery process. Given the difficulty over the past 3 days it was good to have positive reinforcement.

We did receive some really exciting news today.  2 weeks ago today Laura had a FEV1 of 22%. The FEV1 is the measure of volume exhaled during the first second of forced expiratory maneuver started from the level of total lung capacity.  In short, deep breath and blow hard.  More technical information linked here.   Today in Spirometry her FEV1 was 72%. 72%! Amazing and it should continue to increase over the next 3-6 months as she starts to do more.  

Today we had our first home nurse visit to discuss some of the more complex medications that must be reconstituted.  Again, the UCSF team was excellent and made the learning simple.  Thank you again.

Thanks for the help from all of our SF friends.  Good to be back in the city.  First parking ticket already happened.  Totally blanked on street cleaning - #%$@ !  After 12 years in the city and 11+ in the burbs you forget the basics.  

Cheers,

The Z's

We are out!!

We are out!!..   

Amazing that 9 days after the surgery Laura is out of the hospital.   

Progress has been mostly good with some of the expected ups and downs.  With no chest tubes the pain should diminish in the coming days but she will still have to learn to manage the pain from the incision and broken chest plate. 

It will take a few days to get situated and overcome some of the fears and concerns about being out but everyone is excited to be out.  I am sure we will see some of you in the neighborhood.

Thank you all for the great support.  

Two less tubes

Good evening all,

A pretty good end to a full week post transplant.  It is amazing to think that at this time last week Laura was knocked out after an almost 7 hour surgery.  Today we took a couple of walks and chatted throughout.  Thanks again to the amazing team at UCSF.

As far as milestones go today was not only the 1 week mark but the removal of two more tubes. The first was the epidural, if you ask Laura that may be the only tube that will be missed.  The second was a beast of a tube and the 3rd of 4 chest tubes.  

Watching them remove this was shocking.  The tube is 3/8s of an inch or so and 14 inches long.  When they removed it they just kept pulling.  She had 4 of these in her! They had said the pain was not from the 30"+ incision that cuts through 4 layers of skin and requires your chest plate to be sawed open but it's the 4'+ of chest tubes stuffed into your chest. AHHH

We are now down to 1 chest tube and her port is access for antibiotics and pain meds. They did say today that they would remove her port in the future.  

The removal of the chest tube does minimize some pain but the removal of the epidural counter acts that.  The new pain meds are doing a good job keeping Laura at a 3/10 or so most of the time.  It can spike but they are working to minimize that.

Lots of walking at a faster clip this weekend.  Soon it will be in the real world up a SF hill.

We did have another training session today and learn more about what life will be like going  forward.   Given Laura's diligence prior most of this is not a shock or even out of our everyday practice. There are however some BIG loses which we knew were coming.  Sushi and Oyster are gone :( and rare steak - :( :(   

Next steps.  The doctors are very happy with her progress and are ready to boot her once the last tube is removed.  Drainage has improved, down to 300ml a day vs 500ml. We want to be at or below 150 for a 24 hr period.  Given the path, we expected to discharged later this week.  Very exciting!

A few of you have asked if you could send flowers and if so where.  We had a conversation today with the doctors and fresh cut flowers did not make the cut because of the pollen and other airborne agitants.  In doing research there a few charities that take either new or gently used flowers to others. Flower Angels, linked here, is one of those charities. 

Thank you all for the well wishes, support, references to house, (we are close).  We have met others in the hospital that are also in for serious procedure, lungs, hearts, mechanical hearts (CRAZY) and none have the support that we do.  Completely amazing.   

We love you all. 

Cheers

Here comes the pain

All in all everything is going well.  Laura is walking everyday for a total of 1/2 mile or more. She is eating solid food and beginning to enjoy it.  Prior to the transplant eating was a chore and she had no appetite or cravings.  Both are coming back.

She is having some issues with fluid drainage and as a result her legs and feet are swollen.  They have given her a diuretic to help increase the flow but that has not worked fast enough so they are moving onto a new drug.  The issue with the new drug will be that she has to be off the epidural.

After consulting with the doctors, they have diminished here dosage for the evening and will then change her pain meds to either Oxy or Tramadore.  The concern is not about the pain from the 30" incision but the pain from the 2 remaining chest tubes.   They want to make sure the pain is managed not only because of the pain itself and discomfort but it also effects the depth of your breathing.  If she takes shallow breathes it could lead to pneumonia. 

The focus is now on drainage so the chest tubes can be removed and she be released.

Cheers,

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