As some of you are aware, life has changed drastically for myself and my family over the previous 5 years. After my husband and I retired, we wanted to spend the remainder of our days living as vivaciously as possible. We moved our home from Kalamazoo, MI to Charleston, SC and with it, the possibility of rediscovering our lost youth as Michael and I began to immerse ourselves into the community.
Prior to our move, I had received a rather disappointing medical diagnosis. I was told that I had systemic diffuse Scleroderma, a nasty autoimmune disease that results in an overproduction of collagen by the body which causes the outer tissue to harden like a stone gargoyle and the inner organs to lose their efficacy. I told myself, my family, that I would put up as much of a fight as I could muster.
Given that we now lived in the south, and with our new community springing up all around us, I began to try to live each day with more purpose, better understanding, and a greater love for life itself. After the three year mark, and with my disease in relative remission, life honestly had never been better.
However, that feeling was short-lived given the news I was about to receive. I was traveling back to MI for a fairly routine check-up with my Scleroderma provider. Before I could walk into my appointment, I dozed off in my car as I could not shake the intense exhaustion I had been feeling the better part of that week. When I could finally muster the strength to walk in, I collapsed in tears to my doctor as he began to measure my bodily hemodynamics. When he took my oxygen saturation, it read at just over 60%. I felt like I was about to implode. At that point I was immediately hospitalized for nearly a week, and discharged to my home with an O2 condenser. I flew to Michigan using my own lungs to breathe.
As I flew back to South Carolina with oxygen now on my face, I had hopes that I’d feel better by next week. I had no inclination that once I put that mask on, I would never regain the capacity to have it removed. My life would only decelerate from this point forward. To add insult to injury, I found out during a routine mammogram that I would also need to battle breast cancer to continue to survive.
My local hospital in Charleston had told me that I had a mass in my right breast. Unaware that I was receiving an improper diagnosis (regarding the severity of the breast cancer), I was informed that I would need a double mastectomy which in layman’s terms is the complete excision and removal of both breasts. My son, a nurse at the time with the University of Northwestern Medicine, suggested I get a second opinion at his facility. In February of 2021, I had a lumpectomy (removal of only the cancerous tissue, not the breast) in Chicago to get rid of the cancer and with the hope of recovery. I thought I was on my way to being healthy once again. However those hopes were at constant odds with the reality I was actually dealing with.
When I arrived home from being hospitalized in MI I was on roughly 2 L of oxygen. My condenser only goes up to 6 L, and today I require even more than that. As my condition continued to worsen, medical professionals continued to suggest different avenues and modalities of treatment. I was given medication that was supposed to help me walk longer distances. Since I began taking it, my life has only become more restricted. I am not even able to walk from my living room to the bathroom.
After seeing many specialists, in several different practices, I began to lose hope. Nothing was working, nothing I was doing was making any difference to my quality of life. I had been seeing a pulmonologist who had said to me that my only hope was a transplant, that my vital signs did not support living life and that clinically, I should be dead. I started to search for hospitals that specialize in pulmonary transplantation. I contacted Duke University and the Cleveland Clinic, only to be told that my previous cancer diagnosis would prevent them from performing the operation.
Hope had expired by this point and my life consisted of simply existing. What type of life did I even have at this point? I wasn’t even capable of using the restroom alone. Slowly the feelings of less-than-human crept inside me, and a deep depression has since taken hold. Life consists of getting up from bed each day and painfully making my way to my living room chair, where I sit for nearly 14-16 hours daily, only moving to use the bathroom and not until it is once more time for bed again.
During sleep is the only time I feel true peace. As the reality of my new life set in, I still had not given up on searching for a way out. On the advice of my son, I decided I would reach out to Northwestern Medicine again to see if they may have answers because they had done my cancer surgery and I was being turned away from other facilities because of the existence of the cancer. By sheer luck, last week I was accepted into their organ transplant program after a battery of exams and tests were performed. And that is why I am reaching out today, to you, families and friends alike.
Unlike many patients that need organ transplantation, my insurance is willing to partially cover the cost of the procedure. I feel extremely blessed by this. What I was unaware of was the other costs that are involved with this strenuous process. I am asking for your donations because I will need to cover costs for renting an apartment, lifetime anti rejection drugs, travel, food, etc. I am required to stay in Chicago for 6-12 months post-op and see the transplant team three times per week until it transitions to monthly appointments after the six-month mark.
Due to the rapid deterioration of my lungs, my only option to live is a double lung transplant. If you, your church, or company would like to support Cathy on her journey, we hope to raise $75,000 to help with the medical costs.
