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