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