News about our journey

In May 2015, I began posting updates about Laura’s health as a simple way to answer questions. What I quickly realized is that we wouldn’t have made it this far without all of you. Your unwavering support and encouragement have meant more than words can express, and we’ll never be able to fully convey our gratitude.

It’s with a heavy heart that I share this chapter of our journey is coming to an end. Due to the combined effects of kidney and heart failure, Laura’s quality of life has significantly declined, and the decision has been made to move to hospice care. She made this choice and is at peace with it.

Many of you have sent notes and texts, and while Laura isn’t speaking or writing much now, I read every message to her. If you’d like to send a note, please feel free to DM, text, or email, and I’ll be sure she hears it.

I will be sure to keep you all updated in the coming days.

With love and thanks to all.

We are home

 We are back! We snuck into Moraga last Sunday, leaving Durham one year to the day after leaving Moraga.

We have a lot of people to thank. We need to start with Team Laura. We would have never made it to Durham without the support and encouragement of our friends and family.

Nothing can be said that expresses our gratitude. We know that most people do not experience this level of support. We know that it is unique and special. We know that you are all exceptional, and we GREATLY appreciate all you have done.

It was surreal when we got the call that the transplant may/would happen. After waiting 9+ months, we were obviously excited at nervous. As we were working through the process and details and eventually the go-ahead, the coordinators at both Duke and Kaiser were as excited and nervous as we were. This was an investment journey for all. It was a team event, and we can't say enough about everyone involved.

No tags enable us to call out all of the teams that made this journey possible at Duke University Hospital. The pulmonary, transplant, nephrology, ICU, nurses, administrators, dietitians, social workers, and all those we neglected to mention, but we owe you a huge THANK YOU.

The team UCSF Health, you started this journey, and without your efforts, support, and introduction to Duke, we would not be here.

Finally, we must thank the friends and family of the donor. Being a donor changes lives. This family changed our lives and the lives of Team Z. Be a donor. Support others. It is easy to change the lives of others.

We hope that you and your families are well. We look forward to seeing you all soon, outside.

Cheers,

Kevin, Laura and Everett

10 Days out

10 days out, and Laura is making great progress. TODAY, at PT, she walked a mile and rode the bike 1.75 miles, with a weight session in between. The lungs are working great; it is now just a matter of building up strength and gaining weight.

The kidney numbers continue to be good and appear to be working well enough. We will have to continue to monitor overtime.

The team is delighted with her progress. Still sort of groundhog day, but at least it is a new one that continues to improve daily.

For those at home, below are the details for the Team Laura Blood Drive:

* Fri, March 18, 2022 from 11:00am to 4:30pm

* Orinda Masonic Hall, 9 Altarinda Drive

* Goal: 92 appts, 57 donors, 70 lifesaving units of blood ❤️

This is a great cause. As you may or may not know, there is a blood shortage. Before Laura was listed for a transplant, the team had some logistics work to ensure enough blood would be on hand. Donating makes a difference.

Thank you in advance.

Cheers!

https://www.vitalant.org/Donate/Donor-Eligibility.aspx

We are out!

 The telegraph is slow in Durham. Laura has escaped! Literally walked out of the hospital. She did walk out of the hospital but the escape was approved. After a very long day, Laura was discharged on Monday night.

They allowed her to walk out not from a wheelchair, but from her room. Amazing!

Today was a day to begin recovery. A real night's sleep. No interruptions, beeps, blood draws, or other inconveniences. A shower. BOOM!

The movement throughout the day should help the kidneys kick in and the edema dissipate.

Rehab starts tomorrow. Given the 1.5 miles a day pace, we expect the focus to be more on strengthening than cardio.

A new chapter begins. A huge thank you to TEAM Z, this was much different than the previous two transplants. It was more difficult and took more time. The support of the community really made a difference. Thank you so much.

More to come as we begin rehab.

Day 25 at Duke

 Day 25. We are STILL in the hospital. UGH. That said, we are making progress.

Laura is walking over a mile a day with no issue. Tomorrow she will start some PT to build upper body strength and flexibility.

There is one main drainage tube and two small JP tubes. We are just waiting for the main tube to stop draining. We were over 300ml a day and now below 200ml. If we can get below 100ml, we are out the door.

She is off Boost and Ensure and eating real food again. Another box checked.

As for the kidneys, the numbers have been high and continued to increase last night. Over the next week or so, we hope to see them decrease are her movement increases outside the hospital.

They have spoken CT scans, ultrasounds, and other fluid tests. The kidneys are working just at a slower pace. That is not uncommon, and they could rebound.

Hope everyone is well. Thank you for the support.

Cheers,

Day 12

 Sorry for the gap in the updates. It has been 12 days since the operation and all is progressing well. The days are up and down as expected.

Over the weekend the team was finally able to manage nausea and vomiting. Hopefully, that will remain under control as we are moving from tube feeds to solid food. The calorie count is a very important component of recovery and a check box to leave the hospital.

There are still four tubes for drainage. They are all working well and producing, thus they will be with her for a couple more days. These tubes are a major source of pain and until they are removed, pain management is an issue.

Lung function is great. Laura is walking half a mile a day without any supplemental oxygen. 3/4 of a mile is on the agenda for tomorrow! Just grinding it out.

Thank you all for the notes of support.

Cheers,

Day 3

Well, we may have gotten a bit ahead of ourselves.

All went very well today. Laura was able to get cleaned up, which was a very welcoming experience at that surgery. She was talkative and in good spirits. We even had PT scheduled to come by and go for a walk. That changed in the early evening.

We are not sure what happened, but Laura started to feel strange. Tiny tremors in her hand and a spasm-like movement in her face. She actually said she felt like she was having some kind of seizure. At that point, she became unresponsive.

The team intubated her again and made sure she was stable. A CT scan has not shown anything conclusive. She is currently on EEG and will likely have an MRI tomorrow. All of her functions were excellent immediately before this happened. Very, very scary.

She is responsive now and appears to be resting well. Hopefully, we can determine the cause and move on. Impressive to see the Duke team in action. Hopefully, we do not need them to show those skills again. But very reassuring.

I am looking forward to posting a positive update tomorrow.

Again, that you for all the well wishes and thoughts. Greatly appreciated.

Cheers, 

First day, third time

 What a day. It is incredible to think that at this time, two days ago, this scenario was not on our radar.

Laura had a great first day, all of her numbers looked strong, and the doctors were pleased with her progress. They did decrease her sedatives to check her response and she was able to open her eyes, grab a hand and give a thumbs up. The plan for tomorrow is to close and remove the breathing tube.

She is so strong. Really amazing to watch the progression.

Thanks for all the emails, txts, comments.

Cheers,

Out of OR

 Good morning. Laura is out of surgery. I just spoke with the surgeon, and he was thrilled with the procedure. There were no complications. The lungs fit perfectly and started to work immediately. Bleeding was minimal. Only 6 units were needed, which is significantly less than expected. Her body was strong throughout, all other functions working correctly.

They only used 6 units of blood means less stress on the kidneys, which is excellent news.

They did not close just as a precaution. During her second transplant, they had to reopen to do what is called a wash (clean up bleeding). They do not expect that they will need to do that, but if they do, it eliminates the need to re-open. She will be sedated until they close, likely tomorrow.

Hopefully, today will be a non-eventful day for her.

I will share more news as I have it.

Cheers,

Path to Threedo

 Happy New Year to all. 

I wanted to share some news.  On Dec 31st. the Duke team officially listed Laura for her transplant.  The team was very excited and really thought that the wait for lungs would not be too long. Given our experience in California, we had set our expectations a bit differently.

This morning we receive a call that they had possibly found a donor.  Laura went into surgery this evening at about 11:45.  We expect this surgery to be long upwards of 14 hours.  There is a very large team that is very excited to welcome Laura into a very exclusive club of threedos (A Duke term for triple lung transplant recipients).  She will either be the 10th or 11th person to receive a third double lung transplant.

We appreciate all the well wishes, thoughts and prayers.  We hope you all enjoyed a wonder holiday.  Stay safe.

Cheers,

The Zs 

Back in Durham and moving forward

 We made it back to Durham! Another great cross-country trip. SmartLess, thanks for helping us make it across for the third time in 6 months.

We had a full day of appointments at Duke with the surgeon and the head of the pulmonary department this week. All of the initial tests were positive and the plan will be to list Laura on Dec. 31st for her third double lung transplant.

Prior to listing, she will spend one night in the hospital in order to be desensitized to a new antibiotic that will give her more protection from infections through the surgery. We have a number of meetings this week as well. All are just part of the process and all positive steps in the right direction. More to come.

We hope you all have a wonderful holiday and have the opportunity to spend time with friends and family.

Cheers,

The Zs

and waiting

 Hello to all,

It has been a few weeks since I last provided an update. The delay has been due to the fact the process of identifing a living donor is moving. The Lung team wants to identify a qualified, approved living donor prior to listing Laura. We originally hoped that identifing a few possible donors would be enough but that is not the case.

A number of people have asked what is the process to be a donor. The first qualifier is blood type. O is the winner. You must be under the age of 70, have no past issues with melanoma, and completely vaccinated. If you pass those qualifiers you then go to blood a set of blood tests.

For those lucky enough to pass the above tests, you win a mostly expensed paid trip to Duke University for 2 days of testing!

Many have ask about how to start the process. Below is a link that outlines the process, without sarcasm, and provide a comprehensive overview of the donor process.

https://www.dukehealth.org/.../transplant.../kidney-donation

Hopefully in the coming weeks we will be able to move on to the listing phase. Laura's LAS score should be high and hopefully once listed we will move onto the next phase of the journey.

As always, thank you for all of the support, thoughts and prayers. The little notes and text are always appreciated.

Hope you are all well.

Cheers,

The Zs

Still waiting

 Hello from Durham.  We are still here.

For the past 5 weeks, the doctors have been evaluating Laura's kidneys to ensure that they will make it through the surgery.  Given the number and amount of medications she is on and will be on directly after the surgery, they are concerned that she will need a kidney transplant to manage her health long-term.

The question they are now trying to answer is about a need for a kidney and a lung transplant at the same time, or should they wait to see how the kidney performs after a transplant and then, if needed, do a living donor transplant. 

After the evaluation, they have determined that the living donor transplant is the best option.  This means that a donor must be screened and identified before her being listed for the lung transplant.  Ugh.  More time waiting.

They will begin flying people to Duke for onsite evaluations in the next few weeks.  Hopefully, that goes smoothly and quickly, and the process can move on.

Until then, Laura continues to do PT daily with the team.  The PT seems to be working as her lung function has remained in the 20s throughout the process.   She has had to increase her oxygen flow, but that is to be expected.

We appreciate all the notes, cards, and support. Hopefully, we will have more good news to share in July.

We hope you all enjoy the upcoming holiday. Enjoy!

Cheers,

Kevin and Laura

Still grinding

 Happy Friday. Another long week of waiting under the belt. Laura's kidney numbers did improve w/w, but the team is still very concerned about the kidneys' ability to function once she goes back on high doses after the lung surgery. Her numbers are improving, but they lowered or eliminated several important meds that will go up.

Laura had a full session with the Kidney Transplant team to go over the procedure, how it aligns with the lung transplant and the next steps. The team is great and explained where they place the new kidney (they do not remove the old - crazy) and what to expect as part of the recovery.

We are now back on the hamster wheel waiting. The lung transplant team will decide if they do just a dbl lung or a dbl lung and a kidney. There are numerous benefits and negatives to each, but they will make the call with the input of the kidney team. They will discuss either next week or the following, hopefully, next week, so we can move on.

The therapy program continues to be great, keeping Laura's numbers pretty stable. Lung function was at 27%, given that they eliminated some medication that assists lung function; this is a surprisingly high number. The daily workouts are tough but obviously paying off.

Thanks to all for the support, cards, text...etc.

Cheers,

Kevin and Laura

Day 57

 As we approach day 58 on the journey, we don't have a great deal of news to share.

Laura has done a great job in pulmonary rehab and has graduated from the program, given here a diploma from Duke University. She continues to attend rehab daily for 90 minutes to ensure she stays in shape.

We have had a hiccup. Over the past few weeks, Laura's kidney function has declined, causing some concern about the condition they would be in during and post-transplant. The doctors changed several meds to limit the stress on the kidneys, but that comes at the cost of worsening lung function. Airflow is at 7 lpm rest and 10 during a workout.

We have meetings with the kidney team next week to discuss a kidney transplant, and we will work with them to explore the need for a living donor. Hopefully, we will have a game plan and some definitive next steps.

Durham has been great. The people are fantastic, the staff at Duke has been terrific, and there is some great food.

Thanks again for all the support.

Cheers

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Hello to all,

A delayed update, apologies.

Laura is progressing well in her workouts with the PT team. She is now walking 20-25 with no stopping and then jumps on the bike for another 20, of course with plenty of supplemental oxygen. The PT is very pleased with the progress and has progressed to the independent class as she no longer needs the guidance.

Laura is progressing well in her workouts with the PT team. She is now walking 20-25 with no stopping and then jumps on the bike for another 20, of course with plenty of supplemental oxygen. The PT is very pleased with the updates and has progressed to the group class as she no longer needs the guidance.

We spent a full day with the medical team last week for a complete review. All is good, except for Laura's creatinine numbers. This is a measure of kidney function. Given all the meds that she is on, some adjustments are being made. We hope the numbers will lower soon by lowering some of the antirejection drugs and other medications that address edema.

Correcting this issue will be the focus. She will not be listed with high creatinine numbers, and we are hoping to avoid a kidney transplant.

The other news is that we will finally move out of the hotel!!! We found a great place on the top floor of a new building (w elevators). Great light, big outdoor space that will be great until the bugs of summer arrive.

Durham has been great. The food is amazing. Laura and I are both hitting our weight gain goals. We found a delicious French Bakery and had cream puffs and chocolate croissants for breakfast. Healthy living!

Thank you all for the support. Appreciate everything you all do.

Cheers,

Kevin and Laura

Duke called

Duke called today and accepted me into their program!! My flying pigs are definitely fitting for this moment that a few months ago seemed so out of reach! We know we can tackle the next set of challenges in front of us because of our amazing support system!! Thank you for all of the love and prayers! Go Blue Devils!

Hello to all. Just a quick update. We have not heard back from Duke. I know many of you were waiting, as were we. We were told that they would meet on Tuesday to discuss Laura's case, but it can happen that the meetings are delayed, or our case wasn't discussed in that particular meeting. So we wait. Hopefully, we will be on the agenda next week.

Until then, Laura is increasing her workouts to gain strength and focusing on the caloric intake to gain weight.

More to come.

Cheers