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 creating this to not only tell her story of a life-threatening condition and situation we are running into but also to get ready for any unexpected medical bills like Pulmonary Rehab, Genetics Testing, and more. Nicole would like to have her boyfriend, her, and her parent's taken care (relieved) of from gas to + expenses, any unpredicted pulmonary rehab and medical cost bills, ambulance/helicopter bills, Genetic testing (quoted at about $1500-3000 for a full panel for her diseases), and cover her phone and monthly bills along with waiting for this really kind company whom we will recommend later on, (if they win her case), to get her Disability SSDI Benefits approved as well that may come our way.

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

Nicole is an Arizonan, born and raised in a small town in Arizona. She hopped jobs, hopped schools, and was very well known to everyone out there. She loved her friends and was always there for everyone. She is the type of girl you can call at midnight and she would answer. She always put everyone else's needs in front of her own because of her BIG, KIND, Gentle heart.

After graduating from High School in 2017, of course not being as active anymore, she started taking a turn for the worst immediately. She used to love playing Softball Teams and Soccer growing up on the teams at other schools, she was a huge theater kid, and loved being the Mascot girl. Nicole had dreams of becoming a Pilot and moving to attend UCLA College in California. However, all that was taken away pretty quickly.

Ever since July 2017, She has been battling ongoing medical issues that you think would be enough to put her on Disability immediately and be covered. Unfortunately, State Insurance (AHCCCS) only covers certain things and she can barely work due to being unable to make over a certain amount ($1500) a month with taxes included while filing for Disability currently (May 2024).

July 17th, 2017 she was admitted to Banner ER and told by nurses had she not come in when she did, She would have passed away in her sleep that night. She woke her mother up from a sleep at around midnight, choking on her spit and gasping for air feeling like she could not breathe. They immediately sent her to post-op for an emergency Right-sided lung collapse (called a Spontaneous Pneumothoraces) with her right lung only working at 20-25% max function. %75 percent of her lung was gone and not functioning. 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 medical classes, in March of 2019, Nicole had another emergency episode of her Right Lung collapsing again at %40 working function only. She was sent to the Cardiothoracic Department at the time at Banner Hospital where she then had another Mechanical Pleurodesis, VATS, and Biopsies of her lung sent off to the Mayo Clinic for Genetic Testing on Lung Cancer + Diseases. She again had a chest tube and was in the hospital for at least 2 weeks. She was getting scarred up, restless, and in tons of pain from the chest tubes having to be taken in and out of her lungs while she was awake to be discharged.

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 Pleuredesis 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):

Just when we thought she would be just fine, her lung condition started acting up again recently in September 2023. She was diagnosed with COPD (Emphysema) and major Heart issues like SVT and ST (Sinus Tachycardia) due to the Talc Powder reacting and inflaming things. Her lung condition is currently labeled as "Cystic Lung Disease" but still unknown as to why she has it because she has never smoke in her life, and never had any major trauma blows to her chest or falls.

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.

The ambulance bill to go 0.3 miles from her house literally, with just the stretcher and no oxygen needed was billed at $1282.45. This is a bill Nicole can take on as she has $1700 in credit card debt from Dental and medical work already and she barely works 11-18 hours a week at fast food trying to survive with Lyft to and from everywhere. She may have to file for bankruptcy if the insurance does not cover it. She loses jobs all the time because of this condition. They tell her she will not lift anything and will get help, then ends up not happening for her, or they just can not accomodate her constant request off during the weekdays to get to 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 we are looking at at least a 2-7 month long stay depending on it, if ends in just one lung or both needing to be replaced. As we wait for her to see the new doctor in June, we are sitting in both despair and nervousness knowing Nicole is strong, but how much more can we take as a family dealing with this again? The gas to get to and from for her so we can be by her side, the time off work and her too for her phone to stay on, her credit cards to not mess up her perfectly good credit score she worked hard for... wear and tear on our cars, and the possibility of extra doctor bills not being covered especially when it comes to multiple Pulmonary Rehabs she will need to do. Rehabs are almost NEVER covered by State insurance each visit is about 300-450$ a day.

Please send us prayers and we will update as we can. We wanted to give everyone the details so people understood just how rare her possible disease is and that even Mayo Clinic can not figure it out. It is puzzling to all of us with her unknown disease. We have high hopes for Dignity Health & NTI with her care for sure! We have friends who have gone there and say it is the best place for Nicole to be. Please do leave kind words, be positive and uplifting for us all.

Pray hard.

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 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