In a recent post, we told you about Bill Coon, a 20-year-old college student currently waiting for a heart transplant.
Today, we’d like to share two entries from Bill that he wrote in September. We offer these posts to provide a raw perspective into the emotional and physical struggles that some transplant patients experience. We’ll continue to share posts as Bill sends along. Feel free to share a comment of support for Bill below.
Friday, September 11, 2009
It has been eighteen days since I have felt the warm touch of the sun on my skin, went to the bathroom without collecting my urine in a plastic container, or simply used a shower.
I experienced a great deal of pain today. Every inch of my body aches, and to make matters worse, the pain is being caused by four ailments, two of which can be rectified.
The gout is steadily coming back. My uric acid levels increased again, as a result my knees, hands, and jaw began to feel tight and arthritic. Fortunately, I caught the pain before it worsened. The Rheumatology doctors were called in, and they increased my Prednisone dosage. It’s now 11:18pm, the pain has finally begun to subside.
Every muscle in my body feels not only weak, but also sore. The sensation is comparable to the pain that you feel the day after a high-intensity workout. It is a struggle to get in-and-out of bed; everyday activities such as going to the bathroom are becoming a battle in and of themselves. My doctors informed me that the pain I am experiencing is a result of the toxins in my body rising from my inability to receive dialysis, and the fact that I have had so much water pulled off of me from the use of diuretics, my body simply is “too dry.”
Atop of all these problems, my potassium levels are at an all-time low. I was given IV potassium, and warned that potassium can be uncomfortable. My warning proved to be right, as my entire vein burned up through my bicep and into my shoulder. I finally couldn’t handle the pain, especially because I knew that it was not a mandatory drug. My nurse removed the IV, and placed an ice pack on my bicep; it helped subdue the pain.
Though today was filled with discomfort, I have a strong feeling in my gut that tells me the surgery is around the corner.
Wednesday, September 16, 2009
Waiting for the phone call that will save your life is far worse than knowing you are slowly dying an emotional death.
Anxiety builds as you wait for a phone call. Your mind begins to play tricks with you. You begin to think everyone is keeping secrets. You become convinced that everyone around you, including your nurse, knows something. The gestures and actions of the Residents begin to seem awkward. You wonder why they are talking to you, as you convince yourself that they are a part of a secret society-a group of individuals that know your fate, but are sworn to hide the facts.
I wasn’t going crazy yesterday however. Both of my doctors confirmed my suspicions when they admitted that at one point they had a perfect heart donor match. Unfortunately, the kidneys of the donor were damaged when the donor passed, making the heart no longer a “match” for me.
I’m getting tired of everyone texting me, asking if I have heard anything yet. It seems as though whenever I am able to get my mind off of the phone, no sooner does someone contact me begging for an update. I think I need to send out a broad message to all my friends and thank them for their support, but at the same time ask them to stop questioning me about my “phone call status.”
Today was not an enjoyable day. I can’t stop thinking about life after transplant. It’s so close, but it seems so far away. I just want to spend a night alone in my studio apartment, and have a day go by where I do not hear the words “kidney” or “heart.” I want to be normal again. I hate being the center of the attention. I just want all eyes to be on someone else for one day. I want to be Bill again. I’m tired of being “the brave one.”