There is a song by Tony Bennett called "I Left My Heart in San Francisco." The phrase has since extended beyond the song to be used to represent memories and emotions left somewhere such as "I left my heart in the city."
Well, I left my colon in Baltimore.
On Wednesday, June 21st, we made our way to my second post-operative appointment in Baltimore nearly 5 1/2 weeks after my final surgery. Summer was in full swing in the city with a high of 90 as the heat radiated from the busy city streets. In my year and a half of battling Ulcerative Colitis, I have seen the city in every season. Brightly-colored trees in the fall, chilly, barren streets in the winter, blossoming flowers in the spring, and the blazing sun in the summer. The changing weather does not seem to slow down the flowing traffic and or people that fill the sidewalks and buses. The city is ever-changing.
But even with the changing seasons, Johns Hopkins Hospital remains a grand, towering structure in the heart of Baltimore, welcoming in patients and families from all over the world to be cared for by some of the best and brightest doctors.
As we entered the Johns Hopkins Outpatient Center and checked in, I marveled once again at the diversity around me. Families, doctors, students, staff- all with a mission, whether is to care for or be cared for.
After vitals and some time in the waiting room, we were moved to a procedure room. As I listened to the sounds around me, wiggling my foot in anticipation, I looked down at my tattoo. A year ago, it seemed like I would never make it out of my illness. Now here I sat, healthier, stronger both physically and mentally, and changed in ways I never imagined.
In walked my surgeon and an assistant.
"Hi, guys! How are things going?"
I updated him on my improving health and strength. He looked at my incision and asked how I was tolerating food. After several minutes of conversation, he smiled.
"You are healing great," he said. "I don't think you need to come back anymore! I bet you didn't think this day would ever come."
He's exactly right- I never thought the day would come where I would walk out of my appointment, healing and healthy once again. When I first met my surgeon, I was only 72 pounds, losing consciousness every several minutes from blood loss and my body shutting down, unable to eat, drink, or walk, and begging him to please do surgery.
When I first met my surgeon, I was dying.
But thanks to him, I was given a second chance. Thanks to the doctors, nurses, and staff at Johns Hopkins Hospital, I was able to fight my disease. The amount of gratitude that I feel is more than I could ever put into words. Instead of trying to put my gratitude into words, I want to show my gratitude by becoming a voice for those battling an Inflammatory Bowel Disease. Suffering from a chronic illness can be very lonely and defeating at times and I want to use my second chance at life to reach out and remind anyone feeling that way that they are not alone and that it WILL get better. The ER visits, the surgeries, the medicines, the infusions, the tests, the blood work, the pain- it WILL get better.
Leaving Johns Hopkins after my last appointment meant more to me than I ever imagined it would. I will never forget the memories, both good and bad, that were made there. But I will be back. Hopefully not as a patient, but as someone who will help those suffering from similar diseases and walking the same hallways that I did after surgery.
This week also brought new victories in my recovery. In only a couple of weeks, I have built myself up to walking at least 3 miles a day. Additionally, I have introduced slow (very slow) jogging for several minutes at a time. These progressions are so exciting to me. If you remember, in a previous blog from the Fall, I wrote about my experience trying to run outside and being physically unable to. The experience was disheartening and defeating to me, but I refused to give up. It may have taken longer than I expected with several setbacks from my second and third surgeries as well as my month and a half of obstructions, but I refused to give up.
Now, I am no where near ready for a marathon (let alone a mile), but if I can come from only 72 pounds and losing almost all of the muscle to walk, run, and lift in my body 10 months ago, I am optimistic that the next year will bring even more milestones in my recovery.
With that in mind, not every day in my recovery is positive. Some days my post-operative and nerve pain is almost too severe to walk. Some days food just does not agree with me. Some days my j-pouch leaves me unable to leave the house. Some days I am fighting the intense fatigue that comes with a chronic illness.
Not every day is great, but I am grateful for every day.
As we work our way into July (unbelievable), I hope to ease back into work and continue to focus on recovering and improving my health. I knew going into this summer that I would be slightly limited while I recover, but that does not equal boring! Some of my most relaxing days are the ones spent outside, sitting in the grass with the warm sun on my skin. No cell phone, no music- just the rustle of the trees and songs of the birds.
Thank you to every one who has supported me and my family during my illness. It has been a long year of learning, growing, and changing for my family. I know my parents never expected to have to learn how to flush a PICC line and Hickman port or mix vitamins into TPN bags or help change an ileostomy bag.
My parents never expected to hear a doctor tell them their daughter was "not going to make it."
We never expected any of this. No one ever does. I am so thankful for my parents for racing me to the ER at 4 AM, sleeping on the most uncomfortable hospital chairs for weeks, eating hospital food, driving me back and forth to every appointment and surgery at Johns Hopkins, and advocating for me to no end. I could not have made it through without them. Please do not take your health for granted. Our health is something that we do not appreciate until it is gone- and that can happen faster than you realize.
As this chapter of my life comes to a close, a new one begins. I am just getting started.
Thank you Johns Hopkins Medicine.
"I don't want my pain and struggle to make me a victim. I want my battle to make me someone else's hero."
- Kristen