Despite my best efforts, CF has caught up to me. At 47 years old I am currently end-stage CF with my lung function in the 20th percentile, I am now oxygen dependent, and as of December 10, 2018 I am listed for double lung transplant at the Hospital of University of Pennsylvania. My lungs are starting to fail and I am in desperate need of 2 new lungs. At any given moment, day or night, my phone could ring letting me know they have found a match for me. I then have 2 hours to get to the hospital and this new journey will begin. The hope is that the call comes before my lungs give out.
A common cold at this point for me could leave me unable to breathe on my own, requiring hospitalization and machines to keep me alive while I wait for new lungs. So, my current situation could change drastically in an instant. I am in a race against time.
I generally don't like to ask for help in any way, especially financially, so this fundraiser is extremely difficult for me to do, but the costs that Brian and I will be facing are going to be a much heavier financial burden than what we currently carry for CF alone. There are so many hidden costs such as temporary lodging, gas, food, parking and then the obvious medical costs of surgery, hospitalization, rehab, ongoing testing, and post transplant care living, with my main concern being prescription costs. I am told by the transplant team financial advisor to prepare for out-of-pocket medication copay costs between $600-$800/month for the rest of my life. This is on top of the costs we pay out-of-pocket for my medical and prescription coverage since I can no longer work due to my health. The anti-rejection drugs are crucial, and I can never EVER miss a dose. As a transplant patient, I had to have 2 caregivers commit to at least 3 months of 24-hour care for me and this is for an average case scenario where I will be hospitalized for a month and then transition to intensive outpatient rehab that is required to be done at HUP. There is temporary housing available for transplant patients and families close to the hospital that is $60/night and provides 1 meal/day. Our plan is for my mom and Brian to tag team and sleep there when the doctors feel I'm stable (they will have to take turns staying at my bedside in case there are quick decisions that need to be made in my care) and then mom and I plan to stay there after I'm discharged to start the intensive rehabilitation phase which lasts 8-12 weeks, or at least until I'm strong enough to withstand the long days of testing and physical therapy while also tolerating the long drives back and forth from home to the city. When I "graduate" from therapy and come home I will still be followed very closely by the transplant team for a year at minimum which will require many follow up doctor's appointments, blood work, bronchoscopies, and other testing, again all done at HUP, to help ensure the lungs are doing well and the medication levels are correct while my body recovers. No one's transplant recovery is the same, and there is great potential for complications requiring extended hospital stays, inpatient rehab, or readmission. The plan we have set in place allows Brian to continue to work so that we can continue to manage our normal bills, but if my mom gets sick and can't be around me since I'll be immuno-suppressed, or for some other reason can't continue to be my caregiver, Brian will face a temporary loss of wages to care for me until I am cleared to be independent in my own care. So, what we are facing is not only scary and going to be an enormous challenge in many way, it's also difficult to plan for, not being sure of how it will go. While I feel very confident the doctors can handle any situation, the financial piece of it is also just as scary and challenging to plan for. When I stopped working 4 years ago with my lung function dropping dramatically and I was first referred to the transplant team, I had to use my retirement account to pay for my COBRA insurance coverage, all of my medical and prescription copay's, and my durable medical equipment costs so I could stabilize my health by making CF my full-time job, so sadly that resource for me is depleted.
CF is a genetic progressive disease that creates excessive, thick and sticky mucus in the body, mainly affecting the lungs, but also affecting other organs such as the pancreas, kidney, liver and intestinal tract. The thick mucus in the lungs clogs the airways trapping germs and bacteria leading to chronic lung infections, inflammation, scarring, and ultimately respiratory failure. The mucus blocks the pancreas leaving the body unable to digest and absorb nutrients and vitamins resulting in malnutrition and poor growth. When I was born, the expected life expectancy was around 12 years old. With advances in research and treatment, current life expectancy for a baby born today is approximately 37 years. I have defied the odds, living to adulthood, having a career working as a nurse for 24 years and also having a child of my own who I've gotten to see live into adulthood as well. I swallow 50 pills a day, do 9 breathing treatments a day inhaling 4 different medications, and do 3-4 hours of chest PT/day to help loosen secretions in my lungs, and take insulin 3-4 times a day, all to just help maintain my low lung function. CF is a progressive and ultimately fatal disease, so my lung function will continue to decline and the long term effects of the disease and the medications I take have taken it's toll resulting in other issues as well such as chronic kidney disease, CF-related diabetes, recurrent intestinal obstruction, and vestibular damage.
With all of that said, I am focusing my thoughts and energy on the new life I will be able to have and share with all of you when I can breathe easier! It's been so long, I can't even remember breathing easy, but the dream of it sounds amazing, and I cannot wait to feel it! I am tired of struggling and I want to keep living and be here for Claudia, and with Brian, continuing to make memories for many, many years to come!
I am so grateful and blessed for your friendships and support over the years for the CF Foundation. I feel I've been rich in love in this life knowing so many wonderful people, and I've always worked hard and figured out how to get by financially to this point, and it kills me to ask, but the journey I am facing now I know I cannot do alone. I need to ask for any help you can give as I face the biggest fight of my life...whether that is in the form of a donation, or if it's with dinners for Claudia and Brian, or help driving me to Philadelphia and accompanying me for rehab one day once I'm home to give my mom a break,...or most importantly, your prayers... prayers for me and also for my potential donor and their family, who will be giving me the greatest gift and in their darkest hour of grief.
Being a nurse, I like to be the one to help and not the one being helped, so this is completely out of my comfort zone. There are many things about this stage of my disease that is out of my comfort zone, but I am looking for the lesson in all of it. Please know that God willing I make it through this, I promise to pay your kindness forward.
So, Jennie's Hope is for New Lungs...pretty pink healthy ones is the prayer.
Please share this if you can, and be please consider being an organ donor.
God bless and thank you from the bottom of my heart,
Peace, Love & Hope....
Proverbs 31:25 "She is clothed in strength and dignity. She laughs without fear of the future."
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