Nov 28, 2017 Latest post:
Jan 27, 2020
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
My adventure with CF (Cystic Fibrosis) began more than 50 years ago when I was diagnosed with CF at 3 months of age. At that time, the prognosis for a child with CF was not very good, if I survived to see my 3rd birthday it would be a miracle!! Well, maybe that set the stage for my outlook on life, because anyone who knows me, I truly believe in miracles! Thanks to the efforts and research from people like Dr Warwick and the U of M CF teams over the years since my diagnosis, miracles do happen and they have given both patients and families hope for the future and the disease no longer has the level of fear it once did. Most of my life's journey with the disease has been more of an inconvenience than a struggle. I think part of this can be attributed to the love and care provided by my mom during my childhood, she was relentless with her care and insistent on my percussion treatments (hand pounding on a treatment table) twice a day. The biggest headaches were the vest treatment two times a day (I now do 4 per day), the abundance of pills, and visits to the U of M for regular checkups. One benefit of the disease is I never had to worry about my weight, I had the opposite issue and needed to eat as many calories as possible to try and gain. Overall my life was normal. I attended school, graduated from college, worked as a teacher, then moved to the banking industry. I raised a family and did most of the things any other healthy person does. In 2005 my disease began to complicate my life. I experienced a severe lung infection and was hospitalized for the first time. CF was beginning to take its toll on my health, I learned all about IV antibiotics, picc lines and home health care over the next several months and became very proficient in administering IVs. I even continued to work and my IVs were hung from the window shade above my desk. Life went on, but so did the progression of the disease. Over the next several years I was on IVs on an annual basis as my health teeter tottered up and down. Then in 2009, I was again hospitalized and the decision was made I could not continue working and I was placed on disability. In February 2016 as my health was once again on the edge, my Dr mentioned it was time to start looking ahead at the inevitable. I either needed to start preparing for “end of life” or begin preparations for a double lung transplant. Wow, death didn't have much appeal and the alternative comes with its own set of fears and difficulties, so she sent us on our way with the plan to enjoy my summer and contemplate the options and discuss the possible transplant in the fall. But, CF had its own plan and by May I was again admitted; probably the sickest I'd ever been; so needless to say my plans changed as my Dr informed me, I needed to start the process asap. So, again this journey took another path and after countless discussions with my hubby, lots of tears, numerous Dr visits, and lots of prayer, we were on the road to a transplant. That summer was very busy with many pre-transplant Dr appointments, procedures and education. I was approved and eligible for a double lung transplant in September of 2016. Although I was approved, I was not placed on the active list due to being to healthy at the moment. So, fall gave way to another winter and 2017, with my health again on a rollercoaster, with IV’s for most of the winter and again this fall. We were blessed to have a relatively stable summer and enjoyed lots of time in the camper and the adventures of seeing new places. In closing I just want to add that this site is being set up as a proactive step in preparation of what lies ahead. Once I'm activated on the list, our lives will change in an instant with a phone call, with no time to plan or take care of last minute details, so we feel this is the best way to be prepared to communicate with friends and family. Finally I just want to say that my life has been blessed in so many ways I can't begin to list them all. To all my friends and family, thank you for your love and support. I once asked Pat if he could change anything about me what would it be? His reply was “take away your CF” as I thought about that, I answered by saying “but then I wouldn't be who I am”. Life is a gift and maybe I look at it a little differently due to my disease. My faith and trust in God has constantly reminded me during this journey, that He is present even during our darkest times. I continue to believe in miracles and I trust in the care team and Doctors that have helped me to this point. The thought that this gift of a new set of lungs is even possible only affirms my faith. I'm looking forward to my first new breath with healthy lungs, it will be the BEST DAY EVER. In the mean time, I will Make Every Breath Count. Love you all, Julie