Hi, this Fundraising is on behalf of Nicole + Her family.

(PLEASE READ NEW UPDATES BELOW or ABOVE, However, it lays it out, for the most recent findings and if Nicole is having anything done at all).

We are setting up this fund to support Nicole and her family as they face unexpected medical expenses related to her life-threatening condition. The funds will cover costs such as Pulmonary Rehab, Genetics Testing, and other unforeseen medical bills. In addition to medical expenses, the funds will also help cover basic living expenses, such as transportation (Nicole is not allowed to drive currently with her conditions so she takes lyfts & ubers alot to her appointments across town ranging from $15.00 to $75.00 a round trip ride a day, phone bills so she can get updates from doctors or call 9-1-1, and other monthly expenses like uncovered medications. Nicole is also seeking assistance with filing for Disability SSDI Benefits. These funds will provide relief for Nicole, her boyfriend, and her parents, ensuring that they have the financial support they need during this challenging time. We will also be recommending a company that has been supportive and helpful throughout this process, should they win her case. Your contribution will make a meaningful difference in helping Nicole and her family navigate this difficult situation. Thank you for your support.

So let's tell her a lengthy and scary story:

Nicole, an Arizona native, grew up in a small town (Queen Creek, AZ) and was known for her friendly nature. She frequently changed jobs and schools but remained well-liked by everyone. Nicole was a dependable friend who prioritized others' needs over her own due to her compassionate nature.

After graduating high school in May of 2017, she became less active and began experiencing difficulties medically with both of her Lungs. She enjoyed playing softball and soccer, participating in theater, and being a mascot. She had aspirations of becoming a pilot and attending UCLA, but those plans changed abruptly.

Since July 2017, she has been dealing with health issues that make it difficult for her to work. Despite this, she is unable to quickly qualify for Disability through the State because it only covers specific conditions, which she has some sever diagnosis for, but they are still taking their sweet time. She can only earn up to $1500 GROSS INCOME a month, including taxes, while filing for Disability as of May 2024. However, again, she only works part time easy jobs off and on… so her pay is more like $1000 to keep it under the limit.

On July 17th, 2017, Nicole was rushed to Banner ER and informed by nurses that if she had not sought help when she did, she would have died in her sleep. She had woken her mother up in the middle of the night, struggling to breathe due to a right-sided lung collapse (also known as a Spontaneous Pneumothorax), with her right lung functioning at only 20-25% capacity. Following a painful procedure to drain fluid and re-inflate her lung, she spent approximately 3 days in the hospital. After this, she managed to work three jobs for about a year. They did a procedure called a Mechanical Pleurodesis and Chest Tube (very painful) sticking out of her while she was awake to help get the fluid out of the lung and re-inflate it so it would function again. That was maybe a 3-day stay. She was okay for about a year after this working hard having 3 jobs.

2018 she did okay with no issues except maybe a small one on the right lung we were not sure of that did not give her issues.

2019 was when it got rough for her and as a family for us to witness our one and only daughter (kid) go through. At this point, Nicole was 20 years old deciding to go back to college and completed her medical field licensing.

During her EMT classes, in March 2019, Nicole experienced another emergency episode when her right lung collapsed to 40% function during her medical classes. She was taken to the Cardiothoracic Department at Banner Hospital, where she underwent Mechanical Pleurodesis, VATS, and Biopsies. Her lung tissue was sent to Mayo Clinic for Genetic Testing. After two weeks in the hospital, she faced scarring, restlessness, and pain from repeated chest tube insertions and removals.

In July 2019, Right after passing her Medical class with flying colors for the State licensing side of things, her Left Lung was not doing the same thing. Only this time we found out it was because of what they call "Cysts or Blebs", same thing, but these cysts can grow a few centimeters on the lung lining of the chest walls and cause most of her lung collapses. They embed into the lung and pop like a balloon with a needle. You can not re-inflate them without surgery. It is life or death at this point. Nicole at Banner hospital yet again, another 2 weeks had the same procedure done on her left lung now, Pleurodesis, and Mechanical Rubbing on her lungs (kind of like sandpaper material) to try and get them to stick to the chest wall and stay inflated. During that surgery, she was in a lot of pain and her throat got a little messed up from the intubation tube. During this surgery, we ran Alpha-1 Antytripsin and Marfan Syndrome (Cystic lung disease types) testing through Genetics. Those were ruled out as negative. She went home for about two weeks and from there kept having episodes back to back (two weeks in, one week out trying to work, bam another episode).

From August to October of 2019, Nicole was out for 3 months at Mayo Clinic & Banner Hospital again, due to several Pneumothoraces (Lung Collapses). At the time of the collapse (this was the scariest one), she was working at a grocery store as a cashier when she all of a sudden passed out at the check stand. She felt the pain of the pneumothorax like she remembered, and her vision went black. She woke up to the firefighters and her sitting down on the floor getting ready to wheel her out to the ambulance. At this time Nicole was not making a lot of progress with her lungs. We had just seen the Mayo Clinic Genetics department two days prior in North Scottsdale to start the Testing for this disease. At this time started the worst episode of all. Both of the lungs would not stay inflated even with 6 chest tubes sticking out of her (3 on the right, 3 on the left) all while she was awake after surgery. She spent at month at Banner before being referred out to Mayo Clinic on Special Authorization with Insurance and her Lung doctor there to have further options as Banner could not help her anymore. They did not know what was causing it nor what to do.

On October 4th, 2019, as part of her 3-month long stay continued. Nicole arrived at Mayo for the change of her life. She met a new doctor (Cardiothoracic) there who was fantastic at getting her going and knew what he needed to do at the time. After several careful pros + cons options, Nicole took it upon herself at just 20 years old, to have a dangerous very rare surgery done on both lungs while the chest tubes were still in her lungs too. Talc Powder Pleurodesis with VATS, Lobectomy + Thoracotomy (Cutting both parts of the top of the lungs off where the Cysts kept growing sporadically in groups), another round of biopsies to compare to 2017 earlier 2019's from Banner. This procedure was life or death. We did not know how the talc would do with her body if it would reject like a transplant would, or if it would just be inflamed and eventually be okay. This surgery at the time in 2019, we were told only about 80-100+ people had had it done in the world. It was such a rare thing to do for someone so young of her age. But she knew she would be strong enough to go through it. After both lungs were prepared on October 10th and October 31st (yup surgery on Halloween), she ended up catching a bad Staphylococcus infection that had her heart pounding and racing into the 220's -260's beats per minute. She was drenching in sweat and felt sick and fatigued. She had to advocate hard and tell the doctors to do another bloodwork and sure enough they found the infection in time. Barely. Once that cleared up, she got to be discharged and feeling semi-better around November 22, 2019 just shy of enjoying Thanksgiving with her family and being able to go home.

Since November 2019, Nicole dedicated herself even when on all those medications to studying hard and finally completing her official testing in person for the national EMT licensing. She got to work with an ambulance company in the East Valley, learning the job in a different way since she could not lift, push, or pull anything like patients above 10 pounds for life. She got to be on the dispatcher side of things getting patients from Hospital to Hospital (inpatient) facilities! It was a fun job that she loved. It was her first professional big-girl job. She got to be a rookie during the whole COVID-19 pandemic. She was able to buy a brand new (her first car) and go back to Community College where she has one year left to go before getting her associate's in either the medical field or in the fine arts industry. As of right now she has taken a break to focus on her health and we are not 100% she will be able to attend again to finish.

Fast forward 5 years later (2024):

In September 2023, her lung condition, diagnosed as COPD (Emphysema) and labeled as "Cystic Lung Disease," flared up again. She also has major heart issues, including SVT and ST (Sinus Tachycardia), IST (Inappropriate Sinus Tachycardia) due to Talc Powder inflammation. Despite never smoking or experiencing major chest trauma or falls, the cause of her lung condition remains unknown. The combination of these health concerns is a significant challenge for her.

In this last episode on April 29, 2024, Tuesday, She was home alone while her boyfriend was at work, with no car due to losing it from being unable to make the payments with Disability limitations on how much you can make and her being unable to keep a job. She got up around 2:00 PM and started having the chest pains again, quick black vision almost like blackout, and a racing heart in the 170s. She immediately called 911 after Lyft took way too long despite her paying for "Priority", and they took her back to Banner Health and Mayo Clinic for second opinions on a CT scan and X-rays. X-rays were clear. COVID swab clear (after having it twice now we thought she had it a 3rd time). The CT Scan showed another 4.0 CM Cysts on both the Left and Right of the lungs that's predicted to pop at any point currently. Nicole's been stressed, exhausted, and advocating hardcore for her doctors to listen to her about being unable to breathe recently with her emphysema on top of it, and this cyst being there that she decided to go see her Pulmonologist this past week.

Nicole received an ambulance bill of $1282.45 for a 0.3-mile trip from her house, requiring only a stretcher and no oxygen. She has $1700 in credit card debt from previous medical and dental expenses and works 11-18 hours a week at a fast-food job, often relying on Lyft for transportation. If her insurance does not cover the ambulance bill, she may need to consider filing for bankruptcy. Her condition frequently causes her to lose jobs and struggle with scheduling appointments.

Nicole is now being sent to a new Cardiothoracic Surgeon at Norton Thoracic Institute this coming month (June 2024) as a new patient and to more than likely have the Cyst looked at and see if maybe she needs to be on better inhalers, maybe oxygen tanks, maybe a transplant in the later future, and getting the Genetics Test FULL PANEL re-done. This hospital was originally the one in 2019 who was ready for her to be over there for a lung transplant if needed if the surgery for the Talc did not work. Obviously with the Talc Powder in her lungs now, there are concerns of her bleeding out during any future trauma or major lung/heart surgery, the Talc getting ruined, and the lungs not working with the chest tube to re-inflate. At that point, there are possibilities of an Immediate Transplants. Nicole still has Cysts on her both sides as well, so if the doctor ever decides to work on her lungs, we were told that is an even higher risk for Nicole needing DUAL Lung transplants (about an 80% chance if not more). On June 18th, we will see this new doctor and see what she says however, we are planning for the worst to be safe. It was recommended by a few doctors to start a this fundraising while we wait for the Disability to get approved. Better safe than sorry.

If Nicole EVER needs transplants, she may need to stay in the hospital for 2-7 months, depending on whether she needs one or both lungs replaced. As we wait for her new doctor appointment in June, we are feeling despair and nervousness. We are concerned about the financial burden, including gas, time off work, phone bills, and potential doctor bills that may not be covered by insurance. Pulmonary rehab visits, which she will likely need, can cost $300-450 each and may not be covered by state insurance.

Please send us your thoughts and well-wishes (Prayers) as we continue to update you on our journey. We are sharing the details of Nicole's rare potential illness to raise awareness about its complexity and the challenges we face in finding a diagnosis. Even Mayo Clinic has been unable to identify the cause. We are hopeful as Nicole receives care from Dignity Health & NTI, as we have heard positive feedback from friends. Your kind words and positivity mean a lot to us during this challenging time. Thank you for your support.

Pray hard.

FOR PAYMENT DONATIONS YOU CAN PAY ON THIS SITE HERE BUT WATCH OUT FOR THE OPTIONS WHEN SUBMITTING. WE HAVE AN ESTIMATE CALCULATOR SCREENSHOT WE ARE INCLUDING FOR YOU GUYS THAT SAYS $930 IS THE SWEET SPOT TO RAISE SINCE THEY TAKE ABOUT 4% MAX FROM THE DONATIONS. THAT IN TURN GIVES US THE FULL AMOUNT NEEDED OF $900 FOR NICOLE'S APPT ( 2 of them with an insured doctor who does these diagnosis) AND THE GENETICS TESTING THROUGH INVITAE (MAYO CLINIC USES THESE TESTS).

OTHER WAYS TO MAKE A PAYMENT OPTIONS:

Nicole's Venmo: @NicoleKilroy143

Check-in with us on social media (Facebook) at the link below:

Nicole's Facebook Update Group for the Lungs <-- (Click here) to go to the Updates if we miss it on here, and share the page with family and friends and bosses to get the word out!

or Nicole's Instagram (ADashOfNicash).

We will update as much as we can as far as how everything goes with the appointments.

ANY MONEY LEFT WE DO NOT USE FOR HER, SHE HAS REQUESTED TO BE SENT TO the AMERICAN LUNG ASSOCIATION  (or can be sent back to you) for more research help!!! It will go to a great cause.

#Warrior #CysticLungDisease #Prayers #Emphysema #COPD #BurttHoggDubeSyndrome #ElhersDanLosSyndrome #POTS #LAM #SVT #Arizona #RoseGoldRibbonsForNicole #Possible #LungTransplants #Rare #Disease #Unknown