Patrice's Double Lung Transplant
Spende geschützt
Hi! My name is Patrice Faulhefer, and I'm a 27 year old wife, sister, daughter, therapist, and friend living with cystic fibrosis. I created this page to raise funds for a double lung transplant which I need at Cleveland Clinic. Below is my story, thank you for taking the time to read it.
Cystic fibrosis(CF) is a genetic disease that causes thick secretions in the lung and pancreas, eventually resulting in pulmonary failure and death. There are additional bacteria that people with CF can culture and pass to eachother that have no cure and cause worsening lung deterioration. One of these bacteria is Burkholderia Cepacia.
In 2002, when I was 12 years old, someone came into my hospital's Pulmonary clinic with cepacia, not knowing that they had it. That day, myself and many other patients with CF became infected with the bacteria. Before cepacia, I had a very mild case of CF and only required minimal medications to stay healthy. I was very active, being a competitive swimmer and maintained a lung function over 100 % that rivaled most athletes. After getting cepacia, I started to require more care and hospitalizations or "clean-outs" as the CF community calls them. My lung function started to decline 35 points in the first year that I had cepacia, and it has continued since then, now sitting at 25%, leaving me unable to participate in most physical activity and many times struggling just to breath sitting or standing. As my lung function has worsened, my weight has also dropped.(I learned when going to Cleveland Clinic, that is because 40% of the calories I take in in a day are now burned just breathing.)
Clean-outs are necessary when the cepacia gets too strong to fight outpatient, marked by fevers, increased cough, and most recently severe shortness of breath and need for oxygen. Usually this stems from a cold I catch, making a perfect environment for the cepacia to multiply. Each time, the clean outs require me to get a central cathetarization (an IV that runs to your heart), in order to pump the multiple antibiotics that run through it throughout my whole body. The meds make me very nauseaus, and I have to go on anti-nausea meds given to chemo patients, which still can't always combat the strong coctail of antibiotics. Many of the antibiotics I used to use to get me back to normal, my bacteria has grown resistant too, not leaving many options for care when my lung function drops.
When I'm not in the hospital, my care includes daily nebulized treatments, daily airway clearance, inhaled and oral antibiotics, all done and taken multiple times a day, and a ton of other pills. Hospitalizations started in 2002 as one 2 week clean out every other year and eventually grew to what is now 4 clean outs in the past year, ranging from 2 weeks to 5 weeks each time. I grew up missing events and celebrating many birthdays and holidays inpatient with the nurses, who I grew to know and think of as extended family. This year I missed Christmas and 2 friend's weddings.
Missing school and work was always a challenge, but I always pushed myself to keep up, sometimes skyping into class to keep up on the material. The most memorable was the Ethics Class that I skyped into my final year in grad school, having to mute my microphone to vomit from the nausea of my treatments inbetween class readings and discussion. The process was always tricky and unorthodox, but I wasn't going to stop until I achieved what I had decided I could.
Despite the CF and cepacia, I pursued my passion to become a Social Work Clinician specializing in trauma, which grew as a result of my job working as a teen clinician and advocate at a Rape Crisis Center with many inspiring colleagues and clients during my last year of undergrad.
After this job, I went on to receive my Masters Degree from Boston University in May 2014. During my time there, I worked as a substance abuse and mental health clinician to many amazing and resilient clients.
As fate would have it, that fall after starting my first job out of grad school as an in-home therapist, I got sick and my lung function reached a new low that required me to stop working to focus solely on my health. It was at this time that my doctor started suggesting I go to Cleveland Clinic to get evaluated for a lung transplant. The reason I would go to Cleveland, besides them being experts in lung transplant, is because no hospital in Massachusetts will transplant adult cepacia patients for a couple of reasons. One is for fear of cepacia being brought into that hospital, the second being increased risk of the surgery due to the bacteria. However, Cleveland has done many double lung transplants on people with cepacia successfully.
In those past 2 years since leaving my job, I have studied for and received my license as a clinician in my field. In those 2 years, I have also married the best man I have ever met and it has since felt like my life is just getting started. His name is Eric and he's my best friend, my rock, my smile on the hard days, and my absolute everything. This transplant is not just for me-it's for him, it's for our future, our hope for a family and children, for a chance to help people in a career that I am passionate about and qualified for. The transplant is for my nephew, born in November who I want to see grow up, my parents who don't want to outlive their children, my brothers who are some of my closest friends, my friends who I am blessed to be surrounded by, and my in-laws who don't want to see my husband become a widow. So you see, I'm not only wanting to live for my own future, its so much more than that. My desire to continue my life is yes for myself, but also for all the other lives connected to my own, each of whom I love and don't want to hurt.
It was a long process getting to Cleveland, but this September I finally flew out there with my oxygen and underwent a week of testing and appointments with my husband and family. When I met with the Pulmonologist, I heard music to my ears, as he told me I had come at the perfect time! The hard thing about transplant is that you have a small window for treatment, as you can't be too healthy or too sick to receive one. Being accepted into the program is a huge weight off of my shoulders. My anxiety has decreased, now knowing that I have a backup plan in case I catch a cold and am unable to recover from it, even with IV antibiotics. I no longer have the stress of knowing I have no solution to the question, "What is going to happen the next time I catch a cold?" The answer is now: I will get a double lung transplant.
As a social worker, it maddens me to say this next part that I discovered, but is sadly true- that part of being put on the transplant list is dependent upon knowing the patient has the funds to cover the process. Most of the transplant itself is covered by insurance, but there are many additional costs that are connected to the process that have no coverage. The med flight I will need to be transported when I get the call for lungs totals almost $10,000 alone. Cleveland Clinic requires that myself and at least 3 caregivers also live out in Cleveland for the first 3 months after the transplant. This means 2 sets of bills, in Cleveland and at home, the cost of food, transportation, uncovered transplant medications, and unforseen hospitalizations while out there. The caretakers will not be able to work while care-taking, thus asking us at this time to reach out and fundraise to make this life changing surgery and process possible. Please consider donating to my hope for a healthy future with my new husband. It would mean the world to my family and me. Thank you.
Cystic fibrosis(CF) is a genetic disease that causes thick secretions in the lung and pancreas, eventually resulting in pulmonary failure and death. There are additional bacteria that people with CF can culture and pass to eachother that have no cure and cause worsening lung deterioration. One of these bacteria is Burkholderia Cepacia.
In 2002, when I was 12 years old, someone came into my hospital's Pulmonary clinic with cepacia, not knowing that they had it. That day, myself and many other patients with CF became infected with the bacteria. Before cepacia, I had a very mild case of CF and only required minimal medications to stay healthy. I was very active, being a competitive swimmer and maintained a lung function over 100 % that rivaled most athletes. After getting cepacia, I started to require more care and hospitalizations or "clean-outs" as the CF community calls them. My lung function started to decline 35 points in the first year that I had cepacia, and it has continued since then, now sitting at 25%, leaving me unable to participate in most physical activity and many times struggling just to breath sitting or standing. As my lung function has worsened, my weight has also dropped.(I learned when going to Cleveland Clinic, that is because 40% of the calories I take in in a day are now burned just breathing.)
Clean-outs are necessary when the cepacia gets too strong to fight outpatient, marked by fevers, increased cough, and most recently severe shortness of breath and need for oxygen. Usually this stems from a cold I catch, making a perfect environment for the cepacia to multiply. Each time, the clean outs require me to get a central cathetarization (an IV that runs to your heart), in order to pump the multiple antibiotics that run through it throughout my whole body. The meds make me very nauseaus, and I have to go on anti-nausea meds given to chemo patients, which still can't always combat the strong coctail of antibiotics. Many of the antibiotics I used to use to get me back to normal, my bacteria has grown resistant too, not leaving many options for care when my lung function drops.
When I'm not in the hospital, my care includes daily nebulized treatments, daily airway clearance, inhaled and oral antibiotics, all done and taken multiple times a day, and a ton of other pills. Hospitalizations started in 2002 as one 2 week clean out every other year and eventually grew to what is now 4 clean outs in the past year, ranging from 2 weeks to 5 weeks each time. I grew up missing events and celebrating many birthdays and holidays inpatient with the nurses, who I grew to know and think of as extended family. This year I missed Christmas and 2 friend's weddings.
Missing school and work was always a challenge, but I always pushed myself to keep up, sometimes skyping into class to keep up on the material. The most memorable was the Ethics Class that I skyped into my final year in grad school, having to mute my microphone to vomit from the nausea of my treatments inbetween class readings and discussion. The process was always tricky and unorthodox, but I wasn't going to stop until I achieved what I had decided I could.
Despite the CF and cepacia, I pursued my passion to become a Social Work Clinician specializing in trauma, which grew as a result of my job working as a teen clinician and advocate at a Rape Crisis Center with many inspiring colleagues and clients during my last year of undergrad.
After this job, I went on to receive my Masters Degree from Boston University in May 2014. During my time there, I worked as a substance abuse and mental health clinician to many amazing and resilient clients.
As fate would have it, that fall after starting my first job out of grad school as an in-home therapist, I got sick and my lung function reached a new low that required me to stop working to focus solely on my health. It was at this time that my doctor started suggesting I go to Cleveland Clinic to get evaluated for a lung transplant. The reason I would go to Cleveland, besides them being experts in lung transplant, is because no hospital in Massachusetts will transplant adult cepacia patients for a couple of reasons. One is for fear of cepacia being brought into that hospital, the second being increased risk of the surgery due to the bacteria. However, Cleveland has done many double lung transplants on people with cepacia successfully.
In those past 2 years since leaving my job, I have studied for and received my license as a clinician in my field. In those 2 years, I have also married the best man I have ever met and it has since felt like my life is just getting started. His name is Eric and he's my best friend, my rock, my smile on the hard days, and my absolute everything. This transplant is not just for me-it's for him, it's for our future, our hope for a family and children, for a chance to help people in a career that I am passionate about and qualified for. The transplant is for my nephew, born in November who I want to see grow up, my parents who don't want to outlive their children, my brothers who are some of my closest friends, my friends who I am blessed to be surrounded by, and my in-laws who don't want to see my husband become a widow. So you see, I'm not only wanting to live for my own future, its so much more than that. My desire to continue my life is yes for myself, but also for all the other lives connected to my own, each of whom I love and don't want to hurt.
It was a long process getting to Cleveland, but this September I finally flew out there with my oxygen and underwent a week of testing and appointments with my husband and family. When I met with the Pulmonologist, I heard music to my ears, as he told me I had come at the perfect time! The hard thing about transplant is that you have a small window for treatment, as you can't be too healthy or too sick to receive one. Being accepted into the program is a huge weight off of my shoulders. My anxiety has decreased, now knowing that I have a backup plan in case I catch a cold and am unable to recover from it, even with IV antibiotics. I no longer have the stress of knowing I have no solution to the question, "What is going to happen the next time I catch a cold?" The answer is now: I will get a double lung transplant.
As a social worker, it maddens me to say this next part that I discovered, but is sadly true- that part of being put on the transplant list is dependent upon knowing the patient has the funds to cover the process. Most of the transplant itself is covered by insurance, but there are many additional costs that are connected to the process that have no coverage. The med flight I will need to be transported when I get the call for lungs totals almost $10,000 alone. Cleveland Clinic requires that myself and at least 3 caregivers also live out in Cleveland for the first 3 months after the transplant. This means 2 sets of bills, in Cleveland and at home, the cost of food, transportation, uncovered transplant medications, and unforseen hospitalizations while out there. The caretakers will not be able to work while care-taking, thus asking us at this time to reach out and fundraise to make this life changing surgery and process possible. Please consider donating to my hope for a healthy future with my new husband. It would mean the world to my family and me. Thank you.
Organisator
Patrice Faulhefer
Organisator
South Dennis, MA
