Hello everyone Some of you have been following my journey and some are new here; so Hi! My name is Jennifer. I was born with a rare condition called Situs Inversus, this is where my organs are a mirror image of one’s normal anatomy. Example my heart, stomach and spleen are on the right side instead of the left and my gallbladder and liver are on the left instead of the right. I also have Primary Cilla Dyskinesia (PCD). Together that called Kartagener’s Syndrome, even rarer disease. People with this disorder have impaired or immobile cilla throughout the body. In addition to lung, ear & sinus disease, genetic defects that cause PCD can affect all areas that rely on ciliary motility, including reproductive organs and ventricles of the brain. Gastric issues and migraines are also issues for people having PCD. However, the biggest concern is that one cannot clear the mucous and fluid in their lungs and airways. This leads to frequent respiratory infections. On-going (chronic) airway infections begin in early childhood and can lead to permanent damage called Bronchiectas. Because there currently are no cures or regenerative therapy options for PCD, treatment and management of severe lung disease in PCD is focused on managing symptoms, including aggressively treating infections (often requires IV medications and permanent venous access lines), using supplemental oxygen, and keeping the airways as clear as possible. If these measures are not sufficient and the patient progresses to respiratory failure, lung transplantation is the final option. 

At 34 years old I was on oxygen 24 hours a day and a mini vent called the trilogy at night to sleep, 4-6 hours a day of lung treatments (nebulizers and the vest - a percussion system to help me clear mucous) and being listed for a double lung transplant.

I received my DLT Double Lung Transplant on September 15,2019! My donor was a beautiful woman my age named Jill. Because of Jill, my doctors and God I was given the last 6 years to create unforgettable memories.; like Watching my sister have a miracle baby girl, watching all my nieces and nephews grow the past 6 years has been a huge blessing itself. Most of you know I also received the greatest blessing of True Love! It took 40 years and a DLT to find The One but I did. And we just celebrated our first year of marriage Sept. 28. And he gave me two amazing step sons!!! My life was finally coming to together it seemed like, but then I discovered I was in chronic rejection. This was devastating news for us all. But I have stayed positive and optimistic however the time has come the Doctors say I need another set of lungs to survive.

So, why do I write to you, well my family and I need your help! My doctors in Cleveland Clinic have told me I need to raise $25,000 again for this double lung transplant. This will cover the expenses that my insurance will not. For instant, I have to move there and live for three months after the transplant and the insurance doesn’t cover these living expenses, as well as my husband and the family member(s) who will have to miss work to stay with me during these three months. There are several medications that are not covered and the flight for when I get the call “We have a set of lungs for you!” What a joyous day that will be, however the insurance doesn’t pay for the flight.

My husband and I need time, we have so much love to still give to each other, so many memories to make, 2 years is not enough time. I wanted to be mom so bad growing up and now I am a to two amazing sons. One is getting married in July I need to be there I want to be there. Plus I want to see my nieces and nephews go to prom, graduate high school and even get married. I want to live and I need your help to get this life saving chance!

Thank you so much in advance for all those who donate, from the bottom of my heart I can not thank you enough! These lungs will give me a life and time with my husband and family that I can only dream about right now so thank you, thank you!!! And if you can’t donate I understand, but thank you for following my story and sharing it. I hope I can help someone else during their time of need even if its just in comforting them or inspiring them. Together we all can make a difference, if we just try each day to set out to do one thing; remember for no act of kindness is too small.