Inappropriate Feelings...

Tonight I was watching an old episode of “Without a Trace”.  This particular episode portrayed a woman fighting cancer and towards the end of the show she tells her husband that the chemo is not working and that she was ready to die because she was exhausted…too tired to fight.  It might have been over 17 years, but I remember that feeling.  I was so exhausted from the physical symptoms of my illness, too sick to walk and worn out from telling the world that “everything would be okay”.  I was unable to console another person who dumped their emotional baggage on me about their feelings of my transplant.   Somehow I was able to dig down deep and find the strength to persevere. As transplant patients, we can’t express this to our family and friends; it is "wrong"!  The only place for patients to go is in search of more seasoned transplant patients such as myself.  Candidates sit in fear that these emotions - anger towards the situation, fear of death and guilt or resentment that someone has to die are “inappropriate” feelings to have; feelings that some family members might try to suppress and have you never speak of again.  With a transplant, you are closer to death than any other situation you could ever be in…without someone else’s death you are going to die.  So, what emotions can ever be considered “inappropriate” when you are sitting, waiting on another family to begin mourning so that yours can celebrate?  I recently heard a 6 year old who had a transplant say they were scared of dying; a sobering moment in my journey.  I was glad to see that his parents made it okay for him to express these feelings; I hope one day that many more families can accept all of the emotions of transplant even if they do not understand them.  

Transplant Has It's Privileges

One of the most common complaints from transplant patients is about the medical bills. Non-transplant people are always shocked to hear that our meds alone, even with no doctor’s appointments, can cost up to $2,000 a month without insurance. Astounding, I know! Well, I finally found a positive aspect to being a medical high-dollar woman: preferential treatment at the hospital. Case in point: on August 17, I woke with an incredible stomach ache that ended up being appendicitis. Minutes after texting, “So, what is appendicitis like?” to him, my transplant doctor called me and told me to meet him at the hospital. (Come to think of it, having the personal cell phone number of a world-renowned transplant physician is a second perk from my insurance company and me spending more than $500,000 with him over a few month period.)

I spent a few minutes struggling to decide which of the people in my life I was going to burden with chauffeuring me. Ultimately I concluded that, rather than make that call, I would prefer to drive myself to the hospital even doubled over in pain. (I would like to brag on myself for this feat of willpower, but won’t belabor the point considering I had to share the road with more conscientious motorists …)

After what seemed like a much longer trip than it should have been, I arrived at the Treatment Center. Upon hearing my name the hospital receptionist said, “Why, Ms. Tippins, we have been waiting for you.  Come on back. There is no reason to wait or sign in!” Within 10 minutes I was sporting a sexy backless gown that was also missing one of the “handy” (read: pointless) drawstrings, while the nurse was prepping my needle for the good stuff: morphine. Maybe it was the drugs talking, but I thought to myself, “Wow! Now I’ve made it! I am the envy of everyone who has ever waited at a hospital.” Later, more sober, I reasoned that maybe transplant does have its privileges!

President's Letter for RockScar Love

Every morning I wake up knowing that I carry the DNA of three people. My uncommon genetic composition bears with it a tremendous responsibility. Each day I must live in honor of those who have given life to me.

As a teenager in 1993 I should have been consumed with boys, proms and pop culture. Instead I had to wrap my mind around the fact that my remaining lifespan was projected at maybe more than five years. My liver transplant that year literally changed my life. Though the journey has been far from easy, I know I am one of the lucky ones.

As a transplant recipient living for my donors* I have made the commitment to never use my experiences as a crutch. I believe that organ donors and their families desire for recipients to obtain a new lease on life through the precious gift they give. To create the lives of our dreams. To purposefully pursue our goals and aspirations, no matter what they are. In short, I believe that living a life unfulfilled would be doing a disservice to my donors.

Founding RockScar Love was a significant step in achieving my purpose. RockScar Love exists to teach transplant patients that their scars represent something amazing and beautiful. That their experiences are something to be proud of. That living less-than-amazing lives is unacceptable. For some, achieving that point of view takes time. It is a process that I believe is furthered by humor and a spunky attitude. As patients we can acknowledge that the journey has its challenges; but these just mean we have to dig deeper to overcome and become champions. A champion is someone who could look into her donor’s eyes and know that he would be proud of her. I make this thought my daily motivation.

With love for my transplant family, their donors and loved ones –

Amy N. Tippins

Founder and President, RockScar Love Designs

*February 20, 1993-Liver

February 3, 2010-Ligament Allograft