1,500 Mile trip to a life saving liver transplant
Donation protected
Kindly, consider helping me CRUSH my foe, Primary Sclerosing Cholangitis, Through a life-saving liver transplant
Who: Jennifer Mero
What: Funding for moving & medical expenses for a life-saving liver transplant
When: 7/13 is my first appointment with the transplant surgeon
Where: Duke in Durham, North Carolina
Why: Primary Sclerosing Cholangitis
I have vacillated back and forth on whether or not to initiate a fundraiser. It’s a bit unnerving to put your life out there for all to view, but then I realized that this URGENT request is not just about me, instead, it is about my family.
The stress of an impending organ transplant on one's family takes its toll, a great big stress-inducing soul-wrenching peek into your innermost being. To watch my health issues wound and scar those I love as fear grips their hearts is its own kind of torment. To say this has broken my heart would be the understatement of my life.
I was diagnosed with Primary Sclerosing Cholangitis (PSC) back in 2011 when my children were in 2nd and 4th grade and my husband and I had been married for 12 years. As I researched more about this rare disease and grappled with how our family and my life would be impacted, my heart broke as I learned more about my diagnosis.
PSC is a slow, gradual decay where the inflammation and thickening of fibrous tissue (fibrosis) within the passages that carry bile from the liver (bile ducts) kill off your liver. Yes, my body was literally beginning to attack itself; at diagnosis, I had no idea that the liver carries out over 500 vital functions for your body. For years as new symptoms developed and they became my new normal, my doctor was fantastic at keeping me calm. As I round the 10-year mark of having PSC, I find that I have deteriorated in some ways and have been very fortunate in other ways.
Today, itching, also known as pruritus, is my worst tangible enemy. Its intensity and torment have slowly pushed me into isolation. I started to withdraw from social settings because of the embarrassing need to scratch so often. I have further hidden away as my eyes have yellowed and a systemic rash has scared my skin. The fatigue I endure causes me to live a 50% life at best. As of today, there is no cure for PSC other than a liver transplant.
Two years ago we moved from North Carolina to Minnesota for the Mayo Clinic because they have one of the largest PSC Clinics; we prayed that they could turn the tides on the increasing impact of this disease on our lives. We hoped that my need for a liver transplant would be 10+ years down the road of life or never, but in December of 2019, we learned that my MELD (Model for End Stage Liver Disease) had tripled since the summer months. To further devastate us, when I was evaluated at the transplant center we were told that I needed to bring a living donor or accept the fact that I would become much sicker as I waited for such a scarce resource, a liver.
So now we find ourselves moving back east again, but with the reason of being near Duke University who has one of the top 5 liver transplant centers in the United States. Duke tells us that I will move right into transplant protocols in July so that is our current timeline; we have from now until 7/13 to get to North Carolina. We are trying to find an RV to rent to mitigate risks during this 1,300 mile trip in the middle of a pandemic.
We would love your prayers, financial support, and happy thoughts as we journey on this crazy adventure called life. Any gift you can give is GREATLY APPRECIATED and will be used to pay for moving expenses, temporary housing during the transplant as well as medical expenses not covered by insurance. Any gifts over our family’s needs will go to support PSC research.
We will keep you updated on my transplant journey on www.CaringBridge.org & respectfully ask that you share this link with your family, friends, and colleagues.
Grit is what we need.
Hope will sustain us.
God is our only option.
What does the liver do for us:
https://www.hopkinsmedicine.org/health/conditions-and-diseases/liver-anatomy-and-functions
Summary of PSC on
(https://rarediseases.org/rare-diseases/primary-sclerosingcholangitis/#:~:text=Primary%20sclerosing%20cholangitis%20(PSC)%20is,the%20liver%20(bile%20ducts).
Liver transplant center data:
https://www.srtr.org/transplant-centers/?organ=liver
Who: Jennifer Mero
What: Funding for moving & medical expenses for a life-saving liver transplant
When: 7/13 is my first appointment with the transplant surgeon
Where: Duke in Durham, North Carolina
Why: Primary Sclerosing Cholangitis
I have vacillated back and forth on whether or not to initiate a fundraiser. It’s a bit unnerving to put your life out there for all to view, but then I realized that this URGENT request is not just about me, instead, it is about my family.
The stress of an impending organ transplant on one's family takes its toll, a great big stress-inducing soul-wrenching peek into your innermost being. To watch my health issues wound and scar those I love as fear grips their hearts is its own kind of torment. To say this has broken my heart would be the understatement of my life.
I was diagnosed with Primary Sclerosing Cholangitis (PSC) back in 2011 when my children were in 2nd and 4th grade and my husband and I had been married for 12 years. As I researched more about this rare disease and grappled with how our family and my life would be impacted, my heart broke as I learned more about my diagnosis.
PSC is a slow, gradual decay where the inflammation and thickening of fibrous tissue (fibrosis) within the passages that carry bile from the liver (bile ducts) kill off your liver. Yes, my body was literally beginning to attack itself; at diagnosis, I had no idea that the liver carries out over 500 vital functions for your body. For years as new symptoms developed and they became my new normal, my doctor was fantastic at keeping me calm. As I round the 10-year mark of having PSC, I find that I have deteriorated in some ways and have been very fortunate in other ways.
Today, itching, also known as pruritus, is my worst tangible enemy. Its intensity and torment have slowly pushed me into isolation. I started to withdraw from social settings because of the embarrassing need to scratch so often. I have further hidden away as my eyes have yellowed and a systemic rash has scared my skin. The fatigue I endure causes me to live a 50% life at best. As of today, there is no cure for PSC other than a liver transplant.
Two years ago we moved from North Carolina to Minnesota for the Mayo Clinic because they have one of the largest PSC Clinics; we prayed that they could turn the tides on the increasing impact of this disease on our lives. We hoped that my need for a liver transplant would be 10+ years down the road of life or never, but in December of 2019, we learned that my MELD (Model for End Stage Liver Disease) had tripled since the summer months. To further devastate us, when I was evaluated at the transplant center we were told that I needed to bring a living donor or accept the fact that I would become much sicker as I waited for such a scarce resource, a liver.
So now we find ourselves moving back east again, but with the reason of being near Duke University who has one of the top 5 liver transplant centers in the United States. Duke tells us that I will move right into transplant protocols in July so that is our current timeline; we have from now until 7/13 to get to North Carolina. We are trying to find an RV to rent to mitigate risks during this 1,300 mile trip in the middle of a pandemic.
We would love your prayers, financial support, and happy thoughts as we journey on this crazy adventure called life. Any gift you can give is GREATLY APPRECIATED and will be used to pay for moving expenses, temporary housing during the transplant as well as medical expenses not covered by insurance. Any gifts over our family’s needs will go to support PSC research.
We will keep you updated on my transplant journey on www.CaringBridge.org & respectfully ask that you share this link with your family, friends, and colleagues.
Grit is what we need.
Hope will sustain us.
God is our only option.
What does the liver do for us:
https://www.hopkinsmedicine.org/health/conditions-and-diseases/liver-anatomy-and-functions
Summary of PSC on
(https://rarediseases.org/rare-diseases/primary-sclerosingcholangitis/#:~:text=Primary%20sclerosing%20cholangitis%20(PSC)%20is,the%20liver%20(bile%20ducts).
Liver transplant center data:
https://www.srtr.org/transplant-centers/?organ=liver
Organizer
Jennifer Mero
Organizer
Maple Grove, MN