#NewLungsNewLife

April 12, 2022

Hi all,

I'd like to keep you updated on where I am in this transplant journey.

I have changed centers now to USCF (San Francisco). I am being followed every 4-6 months. I have been stable for the last couple years since starting on our new ground-breaking drug Trikafta. Trikafta actually corrects the defect at a cellular level. This has greatly reduced the congestion (green gunk) caused by infection. The infection remains yet perhaps with less of it I also have less inflammation resulting in a break from hemoptysis (bleeds). It is hard to tell if it is the drug OR the severe embolization I had done in October 2019. Perhaps both.

While this is wonderful, the damage to my airways and arteries in my lungs remain. It is unlikely I will improve. Stability is the goal. Having COVID quite severely did not help ––yet I survived!

As many of you know during that extensive embolization performed in October of 2019 (performed by a resident) a mistake was made and the spinal artery was emboli zed causing a spinal cord infarction. I now have lesions on my spinal cord which cause chronic nerve pain which I am learning to manage w meds and new activities to keep my brain focused on other things besides the pain. This may last the rest of my life.

As far as my lungs go I am hovering between 32 and 42% of predicted FEV1 (forced expiratory volume) for my age and weight. 30% is where they consider listing for transplant. As I mentioned, for now I am fairly stable. The original reason for listing me was the bleeds and with those stopped (for now) I am no actively listed at this time.

We never know what is around the corner. I continue to find friendships and experiences (especially outdoors) to fill my life with and make it a full life full of joy, gratitude, peace, contentment and happiness. These five things are the focus of a clinical trial using the ancient Chinese practice of Qigong to reduce neuropathic pain from spinal cord injury.

My mantra is: Enjoy Every Moment.

I am grateful for your support and wish for you all good things.

Love,

Kay

May 30, 2021

Friends/family,

It's been a bumpy ride:

• 2016 Aneurism found in right lung following big bleed. Ambulanced to USC for embolization of aneurism and other enlarged arteries

• 2016-2018 continuing problems w hemoptysis w weekly bleeds and massive bleeds every 3-4 months

• End of 2018 started on disability and was preliminary listed for double lung transplant, then placed on hold

• July 2019 massive bleed when visiting family in Indiana resulted in 9 day hospitalization at Northwestern in Chicago and recommendation for listing

• September 2019 officially listed for transplant

• October 2019 suffered spinal cord infarct during bronchial artery embolization procedure when spinal artery was mistakenly blocked

• January 2020 began seeing new transplant team UCSF

• December 2019 Trikafta, the new ground-breaking CF drug was FDA approved and I started taking it – the coming months/years would see bleeds virtually end, changing my need for transplant for now. I am still being followed by UCSF.My CF is still severe but the nerve pain is harder.

May 29, 2020

To friends,

An improvement to my situation brought about by Trikafta has lead to my life threatening bleeds going away for the last 5 months. I have had other challenges which have been many.

I suffered a spinal cord stroke at Stanford. This has changed my life to one w debilitating nerve pain. Had the new drug come out 1 month earlier the procedure that caused this would have been avoided.

I then went through COVID19 diagnosis and had a brush with death, yet survived. I am still in recovering 9+ weeks into it. I now need oxygen for any exercise and sleeping. I am grateful for the O2 concentrator that I purchased w this fund. I use it on walks.

I have had to go into transplant evaluation with a new hospital UCSF. They are #1 in the country on their survival rates and I have been mostly impressed with the experience thus far with them. Our appointments have now gone to telemedicine and for now, the transplant listing is on hold since bleeding has subsided. My lung function is not yet low enough to proceed w listing. I am now a pre-transplant patient with them should my situation change I will be listed with them.

Thank you again for your ongoing support. It helps with my travel to and from transplant appointments and will again when we are allowed to have in person appointments.

With Love,

Kay

September 20, 2019

Hi friends and family,

We now begin Chapter 2 of Kay's Double Lung Transplant Journey.

After the serious bout of bleeding when on trip to midwest end of June, my transplant team at Stanford has now decided to active list me for transplant as of today 9/19/19. There is no way to know how quickly I will get the call. My LAS score (Lung Allocation Score) is quite low thus I am not at the top of the list. Others who need lungs more urgently come first, as they should.

I ask again for your financial support. A review of budgets suggests another $30,000 is needed. I appreciate any donations you can make.

Grateful. Hopeful.

Kay

February 5, 2019

UPDATE on Transplant Listing from Kay

Hi friends and family,

Last Tuesday, January 29 2019, I underwent a fifth bronchial artery embolization, the first at Stanford. Ashley flew in to support. The Stanford transplant team had made a decision to try one more bronchial artery embolization to bring stability and cessation of the ongoing hemoptysis I have been experiencing. The Doctor performing the embolization did imaging of the arteries in my lungs and blocked off one “tortuous” artery he found. He feels the issue is now controlled and that I am safe from a catastrophic bleed. For this reason my listing has been postponed (deferred) as they consider me too healthy to need a lung transplant at this time.

The Stanford Lung Transplant Team will continue to monitor my health to assess movement into the “transplant window” (being sick enough but not too sick) and the need to more promptly move towards an active transplant listing.

As you can imagine it has been an emotional rollercoaster, first being told I would be listed for transplant and now having the listing delayed.

I appreciate all who donated to my fund w Help Hope Live. The fund will remain in my name indefinitely and I can use it for expenses incurred while continuing to be evaluated for transplant and other uncovered costs for CF Care.

Again, thank you for your love and support. It means the world to me.

with love,

Kay

February 5, 2019

UPDATE

Hi friends and family,

Last Tuesday, I underwent a fifth bronchial artery embolization, the first at Stanford. Ashley flew in to support. The Stanford transplant team had made a decision to try one more bronchial artery embolization to bring stability and cessation of the ongoing hemoptysis I have been experiencing. The Doctor performing the embolization did imaging of the arteries in my lungs and blocked off one “tortuous” artery he found. He feels the issue is now controlled and that I am safe from a catastrophic bleed. For this reason my listing has been postponed (deferred) as they consider me too healthy to need a lung transplant at this time.

The Stanford Lung Transplant Team will continue to monitor my health to assess movement into the “transplant window” (being sick enough but not too sick) and the need to more promptly move towards an active transplant listing.

As you can imagine it has been an emotional rollercoaster, first being told I would be listed for transplant and now having the listing delayed.

I appreciate all who donated to my fund w Help Hope Live. The fund will remain in my name indefinitely and I can use it for expenses incurred while continuing to be evaluated for transplant and other uncovered costs for CF Care.

Again, thank you for your love and support. It means the world to me.

with love,

Kay