6 months today!

It is incredible to think that at this point six months ago we were hours into the transplant, waiting for news.  Kids playing in the park always looking up the hill at the hospital prepared to sprint with news.

As we think back it sure seems like a long time ago.  Unsure why or if that is good but it does. The details of that day have not faded they are all as vivid now as they were then.  It just seems like that was a different life.

Life today is amazing.  Laura could not be doing any better, seriously could not be doing any better, her tests are through the roof. As we take small local trips they all have activities planned, paddle boarding, biking, hiking and food.  All simple things that most take for granted but were not even options.

Weekends now start early with flag football and then the rush to soccer.  A birthday party or basketball tryouts squeezed in for good measure. The chaos of kids and sports is in full swing and it is pretty great to do it as a family.

Six months post transplant is another milestone. One of many on the road map but a big one.  This one will enable us to travel a bit more in the Continental US which is very exciting. What ever that next trip is we know it will not involve letters to airlines to allow oxygen, letters to hotels to receive oxygen shipments, wheelchairs and a full piece of luggage with just supplies. The fact that we have options is and of itself pretty cool.

The comments, emails, cards and general kind words that are shared with us on a regular basis are terrific.  Those comments and your support are enabled us to achieve this milestone.  We do not take it for granted that we have the best support network possible.

Cheers

The Zs

A busy Summer

It has been a couple of months since the last post and from what I have been told, it is way over due.  My apologies.

What a summer!  To say our world has been turned upside down would be an understatement.  To say it has been for the good would also be an understatement. It has been amazing.  Laura is doing amazing. Everett is going great and everyone is happy!

If you were to meet Laura today you would have no idea what she has gone through in the past 5 months. She is back in full force with a big smile and vibrant laugh.

Since coming home in June she has been on a path of continued recovery and improvement. With each passing month she gains more independence.  From being able to exercise (hour+ a day), drive (oh to feel like you are 16 again) and actually do go out and enjoy life with friends and family.   Cooking is fun, food tastes good and the thought of activity is exciting.  

Her new normal could not be more different than it was. As an example today Everett had an 8 a.m. flag football game (a pick6 was in there), 2 o'clock basketball tryouts, overlapping with soccer and the normal errands. Drop E off at 6:30 and off to the city for dinner (with plans for her first cocktail!) Impossible to do one let alone all of them 6 months ago.  

As for that transplant thing, all is great.  Weekly blood draws are still a requirement and she still has a port to manage but that may be removed soon.  They did remove here g-tube as tube feeds are not necessary.  

The medical routine still consists of monthly clinic visits with both the CF and the transplant team.  A means of measurement to test is based on an predicted status.  As an example they may predict here lung function to be at 95%  if she tested at 97% they would consider her 102% of predicted.  In the last test Laura was 100%+ of predicted on every test. The progress she has made has been as good as anyone could ever have been imagined.

As we move forward, they will continue to monitor drug saturation levels and continue to optimize her meds.  Today she is taking 50+ pills a day.  As time goes on that number will decrease a bit with the optimization. She has a solid routine now and it is just part of her day.  The changes in meds are still making managing her blood sugars hard but that too should become more regular with time. All in all medically speaking she is doing great.

We won the lottery of life.  Not a day goes by that we do not appreciate what we have been given.  It is fun to watch the reactions on people faces who do not see Laura often or have not seen her since the transplant.  The amazement, excitement and joy in their expressions are awesome.  All of you were as invested in this as we are and to celebrate the success together is great.

As always a huge thanks to everyone for their love and support.

Hope you are all well. Enjoy life!

Cheers

KTVU Story

Local KTVU did a nice piece on Laura and our story.  The link is here for all you share.

http://www.ktvu.com/news/moment-of-zen/150247866-story

Cheers,

Kevin

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

What a difference 4 days makes

Since leaving the hospital the wind has been at our back.  Laura has been shedding water weight at the clip of 5 lbs per day for three days in a row.  Absolutely incredible. The decrease is swelling has changed everything. 

The pain has diminished and her mobility is great.  Out in the neighborhood daily walking farther and faster each day.  Today she climbed Belvedere St from Bullah to 17th. 

Her appetite is back for the first time in years.  She has cravings and food sounds and tastes great.  Due the effort that her body had to put into breathing eating was a significant task. To supplement her calories she had to have a G-Tube or gastrostomy tube set years ago. Lots of issue accompany the daily tube feeds and the tube itself can cause rashes and be uncomfortable. The doctors have said in the coming months they will be able to remove the tube from her abdomen.  

As she continues to eat and exercise her numbers are going in the right direction.  Sodium and Iron are improving and her Kidney numbers should improve now that she is off the diuretic. 

As far as pain goes, there still is some pain as expected the Tylenol and Tramadol are effective in minimizing the discomfort.  For the most part the pain is no limited her actions.

We are almost half way through the amphotericin treatment.  This is the treatment for antifungal growth in the lungs.  The treatment is vaporized and takes close to an hour twice a day.  Given that there are three vaporized treatments her throat is raw and sore.  This is a short term issue that will go away soon but still scratchy and uncomfortable.

Thanks to the San Diego crew that flew up for a quick surprise visit.  Lots of effort for a quick visit but well worth it. She had no idea it was happening.

The food is awesome. Thank you all. We are very very fortunate to have so many great friends to help.

Cheers!

Busy week with a tune up

Tune up, it is the coming term used in the hospital when you are readmitted after a recent departure. We found this out on Tuesday when Laura was readmitted.

Over the weekend Laura was not improving and after labs on Monday it was found that her iron, sodium and red blood count were are going in the wrong direction.  When coupled with the vomiting and inability to get nutrients into the system if health begins to spiral downward. That was the impetus for the readmitted. 

On Tuesday they started IVs for iron and sodium as well as did a transfusion.  The transfusion was done to help increase the blood count ASAP but done with caution.  The concern was focused on the proteins in the blood that the immune system could identify and as foreign and then kick start her immune system.  This path of treatment has gone very well and you could see the difference within 24 hours.  Correct these issues will also help the swelling and other issues subside in the coming days and weeks.

Laura has had pain in her arms while having her blood pressure check and to be safe the doctors had started ultrasounds to check for blood clots.  They have not found any in her arms and legs over the past three weeks but they did find one in her neck.  They have continued treatment of IV heparin to thin the blood and hopefully prevent any issues.  They will continue to monitor over the next few days prior to making a final decision on next steps. They may chose to a program of heparin shots at home for a extended period of time.  This is a VERY painful injection that Laura would have to do on a daily basis.  

The past two days have been better.  The iron, sodium and transfusion has made the difference that was hoped for.  Yesterday Laura was eating solid food and walking the floor. Today she walked the floor pushing the IV tree by herself and did so at a great pace. Hopefully after a few more days on IV we will be on the right track.

Hope you all enjoy your weekend.

Thank you for the kind cards and notes.

The Zs'

2 weeks from transplant

It is hard to image that just two weeks ago Laura went through a life changing experience. Two weeks later we are adjusting to our new lives and we have started a new journey.  

As we entered into the transplant process we were told that you are trading one disease for another. In the case of CF the trade is welcomed compared to the alternative.  The complexities of the new disease especially in the first weeks are tough.  For those who read the blog and have CF or are on the list prepare yourself.  We understood it would be hard but then again we thought life was hard already.  Air tanks, air compressors, wheelchairs, pills, needles and inhalers didn't make the old life that easy.

The first weeks of the journey are harder due to the edema, pain and nausea.  I am sure in ALL of the possible side effects they were each mentioned dozens of times but after the first few paragraphs of grave side effects we ignored them and tried to stay optimistic.  Optimism is what got us this far.  

Each pain causes the other to seem worse or has another side effect and all make sleep near impossible.  The first 60 days are full of new inhaled meds that require you to be alone in a room for hours since they are toxic to anyone healthy. (We'll see how well the iPad works in 60 days.) 

The funny thing about all of this. Is that there is no conversation about breathing. Like the rest of us it just happens.  Of course there are a number of exercises that Laura has to do to get the lungs into shape but none of our conversations are the lack of air.  So even though this part is hard we know the end result will be worth the effort.

As for effort of others we can not thank you all enough for everything that you have done. We appreciate the food and Munchery deliveries and cards.  A friend came over to the new place with bleach and a tooth brush to scrub the old window sills to make sure there was no mold. Who dies that? Amazing! We know that this support is not the norm and that we are blessed to have such a great group of friends that regardless of their location on the planet are making their thoughts and wishes known. 

A number of you in SF have offered to make meals. Thank you, we happily accept.  I am working on responding and creating a calendar.

More to come.  Thanks again for the encouragement it really does help.

Love,

The Zs

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

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.

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.