The family and friends of Candace Joshnick are coming together to raise money to help with her double lung transplant!
My name is Candace and this is my story: Fourth of July 2008, was the onset of my short journey to the devastating diagnosis of LAM. While out on the boat with friends celebrating I began to have sharp pains in my abdomen, which led to hematuria (blood in my urine), indicating it was time to go to the hospital. I was admitted immediately to the local hospital and the doctor came in with news that would change my life forever. He told me that I had a 15cm tumor on my left kidney. In his thirty years of oncology, the doctor had never seen a tumor this large on a 24 year old girl, so he referred me to a specialist in Tampa. Two weeks later I was going in for my first surgery ever to remove my left kidney which was destroyed by the tumor. Dr. Spiess told me that since I was young he would do a cosmetic cut across my abdomen and try his best to make it not that large. After the surgery and a week in the Moffit Cancer Center recovering, the anesthesiologist told me that my oxygen stats were really low during surgery and while I slept. This brought about many questions from all of my doctors. One of which I thought was extremely strange, “do you have trouble breathing during any of your daily activities?” My automatic response was “no”. When I went back for my post operation, my oncologist told me that my kidney tumor was benign, my first thought was “thank God, it’s all over”! He then proceeded to tell me that the CAT scan of my lower abdomen showed something strange on the left lower lobe of my lung and that he was going to refer me to a Pulmonologist. The Pulmonologist at Moffit had been practicing for thirty years and he had never seen anything like my case, but did remember learning about it in medical school. I was diagnosed with LAM based on my chest x-ray and the pathology report from my kidney tumor called angiomylapoma. Lymphangioleiomyomatosis (LAM) is a progressive lung disease that usually strikes women during their childbearing years. LAM is a disease that occurs almost exclusively in women. LAM is a systemic neoplasm that results in cystic destruction of the lung. It is characterized by an abnormal growth of smooth muscle cells. These cells invade lung tissues, including the airways, and blood and lymph vessels. Although these cells are not considered cancerous, they grow uncontrollably within the lungs. Over time, the cells form bundles in the walls of the airways, as well as the blood and lymph vessels, causing them to become obstructed. These cells produce materials that break down tissue causing the formation of cysts. The delicate architecture of the lungs is destroyed and the airflow is blocked limiting the delivery of oxygen to the rest of the body. Read more about LAM here: http://www.thelamfoundation.org/what-is-lam When I got home I did a lot of research on the internet and did not find any comforting news. I started to get worried. I contacted the LAM Foundation and joined a list to talk to other women around the world that had LAM. I continued to go to work as a first grade teacher and began working on my Masters program. I worked out every day, hung out with friends and family, and went out dancing. I started going to a LAM specialist in Gainesville, FL and got in a drug trial. I felt invincible like this disease had no effect on me. Then it all changed. I had begun my second year teaching, and in the middle of the year I started to experience sharp chest pains and was gasping for air. I had a pneumothorax (lung collapse). I was rushed to Shands Gainesville hospital and had two chest tubes placed in my side. Over the next three weeks I was in the hospital enduring many things most 25 year old girls never will experience. My friends, family, and colleagues visited me and helped me through a very painful and hard time. As my journey continued I learned a lot about myself. I learned how to adjust to a new life style, dating, exercise, work, independence, and not feeling afraid of everything. Over the next two years I went through a lot of ups and downs. I used oxygen more and more everyday. I continued to attend all doctor appointments, took my meds, worked out with the oxygen, and slept with it. I ended up having to resign from teaching due to being excessively fatigued and not being able to keep my red blood cell count down to avoid getting the flu. I decided part-time tutoring would allow me to still do what I love and stay healthy. This change brought in new challenges such as being able to afford to live on my own, pay my medical bills, student loans, health insurance, and all other things related to working part-time. In September of 2012 I decided to start working on my Master's degree in psychology. I was so excited to be feeling ok, and going back to school. I also had one of my prayers answered. I met my husband, Nick! An angel sent just for me to help me through the hardest part of my life so far. I explained to him all of my health problems and how they have scared all of my other boyfriends away. Nick was never once scared and has stuck by my side from day one. He has only known me at my worst and I look forward to sharing my best with him. One month into our relationship and I ended up in the hospital with a right lung collapse. I presented in the ER with a small stroke. I was immediately admitted and had a chest tube placed in my lung to re-inflate it. I was then transferred to a bigger hospital that could help better with my complicated case. I was transferred three times over a months time. I had four different chest tubes, tons of ct-scans, chest x rays, room changes, no sleep, out of control roommates, screaming crazy patients in the hallway, disorganized hospital staff, confused doctors, mean nurses, dirty living conditions, and extreme stress. It was a nightmare. The doctors would come in and tell me horrible news on the hour. I was a wreck. I even got a nurse to help advocate for me when things got confusing. I had over a 100 doctors coming in and no one knew what to do for me. The transplant doctor finally said my only option was pleurodesis. We all knew that this invasive procedure would hurt my chances of being transplanted in the future. It was a tough decision, but it had to be made. I went home a month later with huge oxygen tanks and a wheelchair. I was told to go home and heal then in a few months to come back and we could start the lung transplant process. Nick said he wanted me to move in with him so he could take care of me. I was on oxygen 24/7, struggling just to go to the bathroom. For two months I was bed ridden and stuck to a 25ft cord that connected to a box that created the air I breathe. If I left that box I knew my life would end. This made leaving the house virtually impossible. In order to go anywhere I would have to put 10 pound tanks in a book bag on my back and Nick, my friend Meghan, or my Grandma would have 3 tanks in another book bag. I would have to change tanks every couple hours. This still didn't help with exhaustion or the looks that pierced me in public. Stares, whispers, laughs, and people saying things like "what's wrong with her? see what happens when you smoke"? I always put a smile on my face and rose above the comments that ate at my existence. They had no idea what I've been through or what I've seen. Or that just being able to walk around, oxygen and all, was a blessing. Too many times I have seen four white walls that felt like a prison. To be out walking and not stuck to a wall or machine outweighed all of the snickering and staring. By January I was back in the hospital. I had another collapse, even when I was told that my last surgery would never allow for me to collapse again. This time they really were not sure what to do with me, so they life-flighted me to Duke University in North Carolina where I am today. I have been here over two weeks getting hundreds of tests, learning all about a double lung transplant, the meds, rejection, travel, and my survival statistics. I will remain in the hospital with a chest tube in my side until I get the transplant. It is the safest option at this time. With transplant I am trading one problem for another. However, I'll be able to breathe on my own and take care of myself. Two things I haven't been able to do for almost five years. I almost have forgotten what it feels like to be completely independent. I want that feeling to cover me like a blanket. I can't wait to enjoy that freedom. To just take care of myself. To not wear oxygen. To not be afraid to walk. To breathe. All of this is possible and I never thought this day would come. It's here! I have a long road of recovery and waiting to do, but the hopeful feeling in my lungs just makes me want to sing at the top of my lungs! Celion Dion's "A new day has come" plays over and over in my head! I'm here sharing my journey to bring awareness to everyone on how important organ donation is. In order for me to live someone has to pass and in their passing they have to leave the rights of their organs to sick people like me that can live longer with their donation. Your drivers license has to say your an organ donor. It's a simple procedure. You can go online or go into the DMV. I know everyone dreads the long line at the DMV, but it's the biggest contribution you can make to humanity. You can also save time by doing it online. I also want parents to teach their children about different diseases and to be kind to those with disabilities, because you never know their story. To make assumptions can be hurtful and children should learn to be empathetic and compassionate to those that are different. I look forward to my double lung transplant and the life I have to look forward to. I will never take one breathe for granted and when I get the chance to sit it out or dance, I'll dance! With this transplant comes a new life and tons of expenses. I was fortunate enough to set up excellent health care through my husbands work, but what everyone doesn't see is the extra costs that our insurance coverage doesn't cover. In the first year alone it will be $10,000. No one likes to ask for money and its one of the most uncomfortable things to have to do. However, fundraising in my eyes is a " pay it forward" type of situation. I know I personally always give to those in need. Heck, I would even give my last dollar while laying in the hospital asking for help myself. Haha! So, I'm asking for a one time donation that I can wholeheartedly promise will be one of the best investments you will make in 2013. I will personally come and thank you with my new lungs. I will never take for granted this gift that is being granted to me. I will cherish and very maturely take care of this new life. I will use my new life to empower and enrich others life's and I too will "pay it forward". One of my best friends Kathryn Crabtree is setting up this transplant fund and other local fundraisers in my honor. She will provide information here and update when exciting events she has put together in the Orange Park / Jacksonville, Florida area will take place. Operation get Candace " New Breathers", is in full effect!