After a long eight days at Johns Hopkins Hospital in Baltimore, I returned home late on Tuesday, April 25th. After my extended stay this time, I realized that I have spent 24 of the last 30 days in the hospital battling obstructions and dealing with pain, nausea, and weight loss. It has been a long month and definitely not what we anticipated.
After my PICC line placement on Tuesday, April 18th, I began having severe arm pain and swelling in my upper arm and elbow. While it is normal to feel a little sore after getting a PICC line placed, the pain should lessen everyday rather then get worse. Having had a PICC line in August of last year following my first surgery, I knew that the pain I was experiencing pointed to a much bigger problem. After a series of X-rays and ultrasounds, it became clear that the only option was to remove my PICC line.
This was such a disheartening decision because my PICC line was placed in the last vein that could support the TPN in either of my arms. This meant that I would need a Hickman line placed to as soon as possible to continue to provide me with my TPN.
A Hickman line is a central venous catheter that is inserted into the jugular vein at the base of the neck and tunneled under the skin to the "exit" site a few inches below. The catheter at the entrance site is then reinserted again, this time advancing into the superior vena cava of the heart.
The experience was scary, to say the least. I was not given anesthesia for the procedure, but instead just placed under light sedation. Fortunately, the procedure was painless and I do not remember much of it. What I do remember, though, is the team placing my Hickman line rocking out to the Backstreet Boys while they prepped me for the procedure. In times when you find yourself in a scary situation, sometime all it takes is a little laughter to ease the stress. I am thankful to the nurses and doctors who went out of their way to make me as comfortable as possible.
Due to the nature of the procedure- involving two incisions and stitches- I was (and still am) pretty sore. This is a soreness that is expected, though. The pain that I was feeling in my PICC line was not normal pain and exceeded normal soreness.
My TPN now runs through my Hickman line 12 hours a day in addition to fluids for several hours.
It is easy to look at my current situation and become frustrated and defeated. No, it is not the ideal situation. I am weak from no food, lacking energy, and still in pain on a near daily basis. Despite this, though, I feel empowered. I wake up each morning with the mindset that it is a new day and I am in control of how my day goes. I can choose to be miserable or I can choose to make the best of the situation I am in.
Hating your current situation is not going to make it go away. All that it does is steal your happiness and appreciation for the beautiful things in life. If today is not a good day, there is also tomorrow. Or the next day. We are completely in control of how we handle the hurdles that life gives us.
As I rest and relax this week I have also taken the time to reflect on my last week in the hospital. I had bad days. I had OK days. I had days when it was all just too overwhelming. But among those days of struggle and pain, I had the chance to meet so many amazing individuals.
Thank you to my nurses. Thank you for always greeting me with a smile. Thank you for going out of your way to make sure that I was comfortable. Thank you for being my advocate in times of need. Thank you for sitting next to me while I threw up. Thank you for working through your own hunger and tiredness to make sure my TPN was started on time. Thank you for the laughter and your love and compassion. Thank you for cheering me on as I limped down the hallway.
Thank you for believing in me.
Thank you to my doctors. Thank you for your honesty. Thank you for your concern. Thank you for doing what was right for me, even if I did not understand why at first. Thank for listening and understanding. Thank you for encouraging me. Thank you for making me feel like an individual, not just a number.
I have met so many amazing individuals throughout my battle with Ulcerative Colitis and it is truly overwhelming to me. These individuals are so selfless and so loving- always placing your comfort above their own. I offer my thanks over and over again, but it will never match the gratitude that I will forever have for those who have touched my life this last year.
I may never see some of those who impacted my life so greatly in such a short amount of time again. But I am a firm believer that people enter our lives at the perfect time to teach us something and guide us along our way and when their lessen is done, they exit our lives. This is not a bad thing: it simply means that they have taught us all that they were meant to teach and have moved on to teach someone else.
It has been a long month- or year at that- but as my Uncle Frank always says:
"Keep on, keepin' on."