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Welcome to my double lung transplant fundraiser page. Please click ‘see all’ to read about my journey to transplant.
Friends and Family,
Life with Cystic Fibrosis hasn’t ever been predictable or easy, but it has been good!
After a 4-day evaluation with Stanford’s Health’s Lung Transplant Team, I have received “official word” that I will be listed for a double lung transplant. My health is getting serious now and my genetic illness is now medically referred to as “end-stage Cystic Fibrosis.”
In September 2016 I had a massive bleed in my lungs (hemoptysis) and simultaneously learned I had a very large aneurysm. I was transported by ambulance from Cottage Hospital in Santa Barbara to USC in LA for an embolization procedure in which the team embolized the aneurysm and several other bronchial arteries. After this particular procedure I faced a hard and long recovery but eventually made it back to my full-time job, hiking in nearby hills, paddle boarding and enjoying life. Following that procedure things seemed to resolve for some time.
The hemoptysis returned and has been doing so with more frequency since the beginning of 2018. I have had three bouts of what is considered “massive hemoptysis” this year each followed by an embolization procedure. In between these big bouts I’ve had notable smaller bouts of hemoptysis more than 19 times this year. Embolizations are an effective treatment that temporarily stops the bleeding, but are a short-term solution. Following multiple massive hemoptysis events the prognosis is not good w 50% survival rate for future such events.
Each of the four times I’ve had a massive bleed followed by an embolization procedure, I worked to regain my strength with the end-goal of going back to work full-time. After my most recent embolization, I made the hard decision to go on short-term disability and I now have decided to embrace my medical reality and will apply for long-term Social Security disability. My health is now my number one priority.
My current quality of life is no longer considered acceptable, medically or personally.
As I mentioned earlier, I will be listed for a transplant at Stanford and this is what brings me to Help Hope Live. While I will be covered by insurance for the surgery, there will be many uncovered medical expenses. I will need to raise funds to help with unmet medical expenses.
Some of those funds will support travel to my appointments, temporary relocation, anti-rejection medication, co-pays, caregiver, physical therapy and so much more. Though it is unknown exactly when I will be called for transplant, the time is now to begin to ask friends, family, coworkers for support.
Donations to Help Hope Live in my (Kay’s) honor, will help ease the financial burden of the transplant and allow me to focus on staying strong for the transplant and preparing for a healthy recovery.
I have chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility to the full extent allowed by law for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the GIVE button. And please consider sharing this link with others so they may donate as well.
Thank you for your support!
For Checks:
Make checks payable to: Help Hope Live
Note in memo section: In honor of Kay Wharton
Please send to: Help Hope Live
2 Radnor Corporate Center
100 Matsonford Road
Suite 100, Radnor, PA 19087
For more information, please contact Help Hope Live at 800.642.8399.
Hi all,
Quick update. I have seen a big drop in my lung function and again will be evaluated for a double lung transplant.
I had a nice 3.5 year reprieve where i was stable due to a miraculous new drug that came out in2019 and I am grateful for that time. Recently a uality of life has deteriorated and I am wearing oxygen for walks and simple tasks like cleaning my apartment.
It is uncertain at this time if the transplant team at UCSF will accept me into their program. I am hopeful they will and that I will have a stretch of good years with lungs that allow me to once again be active and enjoy life.
I will continue to post updates here.
With gratitude, Kay
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
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.
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
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
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
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
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Hope this works out well for you, Kay.
Love, Your cousin Tom
Thomas Wharton
We are praying for you Kay!! We want to be part of your team!
Gary Small
Dear Kay
Stay strong. You will be in my thoughts and prayers. Have a blessed Christmas.
-Tanya
Tanya Quijalvo
Kay - you are a strong and determined woman and I know you will beat this!
Oshi Jauco
Wishing you a bright Christmas season and hope for a healthy future. Keep us posted on your journey.
Nancy Allesee
sending waves of love and well wishes your way.
tera barber
Merry Christmas Kay! Sending lots of love and prayers. Jennifer.
Jennifer Wallin
Of all the people I know you are the bravest and most determined. While others would have given up long ago, you persisted, refused to be an invalid and did everything possible to maintain your health and life. You are a role model for every person out there suffering with a life threatening disease. You are my hero!
Laura Cianci
Thinking of you, Kay.
Love, Bill and Danaë
William Wharton
Thinking of you and your family, Kay. : ) Nicole P.
Nicole Pecaro
Kay, Our prayers are with you on this journey. May God guide every step! Love Roxanne and Gary
Roxanne Small
Oh, Kay.
I had no idea. Will donate what I can thru FB for double/matching.
Call on me for whatever.
Metta
Joe Giral
Loving DivineOrder blessings are with you, Kay, your family and all involved with your healing process.
Dawn Locklear
Kay has been dealing with Cystic Fibrosis on a daily basis for many years now. I'm sure many didn't know of her journey because it isn't a real visible disease. Her determination and success in delaying the inevitable is to be admired. As her sister and a nurse I have seen her and others struggle with this disease for years. I know at times I haven't been personally available for many reasons but support (financial, emotional, spiritual, physical) can mean so much. So I encourage others to support Kay in any way that they can. She has a huge challenge to overcome and any support would be appreciated. She struggled with asking for others to donate but the process of transplant, follow up etc is costly for her and her caregivers. Kay will be hospitalized for approximately 3 weeks then has to stay close for 3 months. She's required to have a caregiver available that whole time. Her daughter, Ashley, has offered to be her main caregiver! That is a huge commitment and so anything others can do to support Kay and Ashley(yes, caregivers need support too!) is so greatly appreciated. With much respect and love your sister, Julie
Julie Lubaway
Hello Kay! You are still an amazing and inspiring woman!
God Bless you and I am sending a check...although it is small, but know it will help in combination with other donations.
Remembering our days at Richard Honquest. Keep up the good fight!
Robyn Bachmann
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Kay Wharton
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
Donor preference is important to us. Please specify in writing if you wish for your name or donation amount to be kept private.
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