A New Title, A New Chance

I've had quite the summer. My life has changed dramatically in the last two months, in a way never foreseen by me. I was reading Psalm 139:16, where it says, "You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed."(NLT) God knew the direction my life was to take, and has been with me every step.

At the beginning of July, I became congested and thought I had developed an allergy. After two visits to the doctor and allergy medicine tried, I still wasn't feeling better. I developed a cough that became more extreme. On my third visit to the doctor, he took an x-ray and determined that I had pneumonia. I got more medicine for pneumonia, but still felt worse and worse. I completely lost my appetite, eating virtually nothing for over two weeks.

Finally, on August 19, I woke up with one thought in my mind - "Something is not right." Fortunately, Eric was home due to the Blue Cut fire shutting down his school district. He took me to the emergency room. After blood tests and a CT scan, the doctors told me that I had blood clots everywhere - in my heart, lungs, liver, spleen, and other organs. I was immediately put on blood thinners and admitted to the hospital.

Over the next several days, I had 5 CT scans, a lung biopsy, and a bronchoscopy as my team of doctors tried to determine what was going on with me. My rheumatologist, Dr. Kiran, discovered a marker in my blood called ANCA, which led her to suspect that I had developed a rare auto-immune disease called Wegener's disease, a form of vasculitis. (It's now called Granulomatosis with polyangiitis - GPA). As each test came back negative, Dr. Kiran became more convinced that this was what I had developed.

Forty years ago, GPA was non-curable and non-treatable. Most people who developed it died within  five months due to multiple organ failure. Developments in medicine now make GPA treatable, while not curable. Treatment with steroids, blood thinners, and chemotherapy can send the disease into remission. Dr. Kiran explained the treatments to me and determined to start treatment immediately.

However, I developed a complication. After my lung biopsy on August 22, my left foot felt like it had fallen asleep. Over the next week, I lost all feeling in my foot and could not stand on it. The doctors determined that I had developed a blood clot in my foot. On August 27, the doctors performed a three-hour surgery to attempt to remove the blood clot. When I went to the recovery room, the doctors told me, Eric, and my parents that the surgery had not been successful. The only option was to remove my left leg.

After doing some research, the doctors informed me that my situation was so rare that I am about the seventh person in the world to have GPA with associated limb loss. Hence the new title for my blog.

My vascular surgeon, Dr. Aka, gave me the options. I could remove the leg below my knee, but he was extremely concerned about this option. The risk of infection was higher, and could lead to a second surgery to remove my leg above the knee. In my weakened condition with GPA, he did not feel like this was the best option. He felt that removing my leg above the knee was better overall for me. After much prayer, I felt like I had to take my best chance, which was to do what Dr. Aka recommended.

On August 31, I had the surgery to remove my left leg. Afterwards, my parents said that Dr. Aka came out of surgery extremely pleased with the success of the operation. He did a wonderful job. There was no infection, and the wound has healed perfectly with no complications.

The following day, I started my first round of chemotherapy for the GPA. I was extremely sick from everything that I had been through - surgery, chemo, and not eating for several days. I started to feel better on September 4 and began the long process of recovery.

I began physical therapy in the hospital that week. At first, I could barely move my body. It felt like a chunk of concrete. Slowly the therapists got me to standing on my right leg - with the aid of a walker -  for a short period of time and then transitioning to sitting in a chair.

On September 11, I was finally moved from the Kaiser Step Down Unit to the regular patient rooms. My care in Kaiser's Step Down Unit was phenomenal. The nurses were first-rate - caring, competent, discreet, and encouraging. Every member of the Kaiser staff was amazing, from the mobility techs, housekeeping personnel, to the food service workers. I couldn't have asked for a better experience while in the hospital.

Two days later, I  was moved to Brookside Healthcare Center for rehabilitation. God was before me in this also - I was put into a room with a wonderful roommate, Eileen Lesher, who is an educated Christian lady. We were a perfect fit and got along so well.

In Brookside, I had daily therapy with wonderful therapists who pushed and encouraged me. Within two weeks, I went from barely being able to stand to hopping down the hallway with the walker. My right leg and both arms grew in strength rapidly.

On September 29, I had my second round of chemotherapy. This time, Dr. Kiran adjusted the anti-nausea medication and gave me a little less of the chemo medicine. I recovered quickly with no nausea at all, although I was extremely tired afterwards.

The big day came on October 1 - I got to go home! I had a great experience at Brookside, with a caring staff that was encouraging. I had spent 26 days in the hospital and 18 days at Brookside. I was gone from home for over six weeks.

You may be wondering what was going on at home while I was in the hospital. I left home on August 19, virtually dropping all of my responsibilities on Eric and Josh. Suddenly they were left to deal with laundry, shopping, dishes, and cooking. Eric had started a new job in July and had to juggle that new responsibility with picking up lots of extra chores. Fortunately, my friend Carol McKenzie set up weeks of people willing to bring meals for my guys. The response of people who brought meals has been amazing - they were able to lighten the load a little for us. What a blessing.

Since coming home, I have been able to get my life a little back. I've been able to get a hold on our finances (what a mess after doing the minimum for weeks!). I've continued to get stronger and am able to be on my own for the majority of the day. I have Home Health coming to continue my therapy.

Through this whole experience, I have been blessed by so many people. The cards, visits, gifts, and prayers have been amazing. I don't know how many people told me that they were having their church pray for me. The prayers of so many have buoyed me through this difficult time, even when I couldn't pray for myself. I know that this has made a difference for me.

I know that God has a purpose in this. My life is completely different than it was three months ago. I'm living one day at a time now. I have no idea how long my total recovery will take, how long it will be before I can get a prosthesis and regain my mobility, or when I will be able to manage going back to work. (Fortunately, I had lots of sick time accrued and my school district will be doing a leave bank to extend my sick leave). All I can do is trust in God each day for strength.

Through this all, I have had a sense of peace which could only come from God. I've tried to keep a positive attitude, although I've had my moments of frustration. Looking back at where I was a month ago, I've seen the progress I've made and it's encouraging. I've seen how I've taken things for granted, like getting up and expecting your day to unfold a certain way. I hope to take out of this a new sense of gratefulness, of being given a second chance at life. God preserved my life for a reason, and I know that He'll show it to me in His time.