13 years ago this November I was diagnosed with a rare, incurable, painful bladder disease called Interstitial Cystitis (IC). To learn more about IC, check out the ICA website: http://www.ichelp.org
Luckily, I was referred to one of the most excellent doctors in the field and this November it's been 13 years since I have been under his care. He has worked tirelessly to help my IC and get me some relief. If there was/is a treatment we tried it. Unfortunately, medication and I do not get along and all the pain meds that many IC patients take, I cannot. I finally opted for the InterStim Sacral Nerve Stimulator to help my frequency and we found the right instillation cocktail that helps my pain. I can even do them at home. Unfortunately, as hard as I tried, my IC and the associated pain and exhaustion from lack of sleep, forced me to apply for Social Security Disability (SSDI). My doctor wanted me to apply 2 years before I did, but I wanted to keep working. I tried for 2 more years before talking to my doctor and he actually told me he was glad I was going to apply and he would do all he could to help me. It's been a long and winding IC journey, but I am so lucky to have the doctor I have and can't believe I've been seeing him for 13 years in November!
Two years ago in November (November 11, 2013 to be exact) I woke up with a cough that seemingly came from nowhere. The cough got worse and worse and after seeing my Primary Care doctor multiple times, he wanted me admitted to the hospital. After a week in the hospital, all the tests were inconclusive. I was referred to many different specialists who were convinced they would figure it out but none of them ever did. By February, and another week long stay in the hospital in December, my doctor said he had a colleague up at the Mayo Clinic in Rochester, MN who had agreed to see me if I could get there. My family scrambled and we were at Mayo late afternoon the next day with all the tests and doctor appointment scheduled for the day after that. It was a trip well worth making, as I was finally given a diagnosis. Not one any of us expected to hear. In just 3 months I had gone from, being as OK as someone on SSDI could be to being told I had what was called Idiopathic Bronchiolitis Obliterans and that I would need a Lung Transplant to live before the end of the year in all likelihood based on how fast the disease was already progressing. I've never been more shocked and scared in my whole life.
My doctor back home went to work trying to get me appointments with transplant doctors. The first one I met with turned me down and would not accept me into their transplant program. He said I was too complicated. But my doctor never gave up on me and got me an appointment with the Transplant Doctor at Loyola University. By this time it was April. Nothing in medicine seems to happen fast and I was getting sicker by the day. By this time I was on Oxygen 24/7 and could not walk without using a walker. If I had to go a long distance, I needed a wheelchair. Having to be pushed around in a wheelchair while pulling oxygen around with you is no small feat. I was finally accepted by Loyola for a Lung Transplant and listed with UNOS in June 2014. So the waiting for my transplant began. Summer came and went as I waited very anxiously for a life saving lung transplant. It seemingly was never going to come.
But again, on Sunday, November 2, 2014 I finally got "The Call" (9 days short of one year since waking up sick); they had a lung for me and I was to get to Loyola as safely but as quickly as possible. The official date of my transplant is November 3, 2014. So once again, another medical milestone in November. I'll be writing about my one year anniversary on that day.
But, whatever it is about November, lots of medical things seem to happen in that month. Of course there have been many more. I have been sick for 13 years now; dealing with my IC, then the Lung Transplant.
Getting a Lung Transplant, or any organ transplant for the matter, is a major surgery. About as major as they get. I am still recovering but now I'm experiencing what the Transplant Team warned us about before our surgeries. Side effects from all the medications I must take to keep my body from rejecting my lung. Kidney function issues requiring IV saline infusions, low white count requiring medication injections in the stomach, constant blood tests. Getting sick because I am immunocompromised and running a fever; antibiotics for the infection I got. Taking 35 pills every single day.
Yes, November seems to be a very popular month for me to get sick, have surgery etc. There is always something going on since my transplant all year long: a bronchoscopy every 3 months, a Clinic visit with my team every 3 months for life, scheduled and unscheduled blood tests, reacting to problems that arise. It's never ending.
Don't get me wrong. I am blessed and thankful to be here and treasure the Gift of Life I was given. But often people think, we get our transplant, take our pills and all is fine. If only that were true. As the doctors explained, we will be facing a whole new disease state from all the medications we must take and it's challenging, not fun and some days you just don't feel like being a pin cushion, or having a tube shoved down your throat to check your lungs and make sure there is no infection or rejection. Some days you just want to be normal again. But if I want my lung to stay healthy and stick around for a long time, I must do whatever the Transplant Team tells me to do.