PKD Connection Blog

PKD Will Not Beat Me

Bounce back, give back: Part 1

Valen preparing to meet with Dr. Kadison, who approved her for infusion treatments in Colorado.

I was in disbelief when I read the thermometer and saw my temperature was 101.2. The first thing I thought of was how Noah and I needed to be on a plane in three days to Aspen, Colo., where I would receive the Bounce Back, Give Back Award from the Chris Klug Foundation (CKF) on top of Aspen Mountain at their annual Summit for Life event. Due to an ongoing and serious illness, I was devastated at the thought of missing this.

Next thing I knew, Noah and I were headed to the hospital where I was quickly admitted for having sepsis for the fourth time in fourteen months due to Primary Sclerosing Cholangitis (PSC). So many thoughts, emotions and questions flooded my mind that first evening in the hospital. Since we knew what caused my sepsis and that daily IV antibiotics would be necessary over the next several weeks, before long, Noah and I found ourselves Googling infusion centers in Aspen. When we learned there was one 10 minutes from our hotel, our eyes met with a glimmer of hope. We became cautiously optimistic and excited that our trip might still be possible.

Valen at the Aspen infusion center where she received treatments.

My body responded positively to the IV antibiotics, my lab levels improved quickly and my overall health stabilized fast. I shared with my doctors how important this trip was to me, conveyed my thoughts and medical concerns and asked if it was feasible to make the trip. All of my doctors gave me their blessing to go.

Since I was traveling out of state and my doctors only practice in California, I had to find a doctor in Colorado that would co-sign my infusion order. I scheduled my daily appointments with the Aspen Infusion Center and they scheduled an appointment for me with a local doctor, Dr. Kadison. When I got into Aspen, I met with Dr. Kadison and she co-signed my order, allowing me to go to the local infusion center every day to receive my treatments. I was a little apprehensive about flying to Aspen right after being discharged from the hospital in California, but doing so taught me so much.

Valen with her infusion nurse in Aspen, who made her experience there wonderful.

I was reminded that where there is a will, there is a way. I learned the importance of not letting our health limit us from traveling and enjoying life. I was so proud of my mental and physical determination to “bounce back” from this latest hospital stay and battle with sepsis. It was invigorating to not let my need for daily IV antibiotic treatments keep me at home, and it was empowering to do the legwork to continue my care in Aspen. I was truly living up to the name of the award by bouncing back and doing whatever it took to attend CKF’s Summit for Life. The trip was so amazing, it was worth every second of the effort it took to get there. Stay tuned for my next post sharing my extraordinary experience receiving the Bounce Back, Give Back award.

How have you bounced back and what have you learned from doing so?

Comments

  1. Karen Fitzgerald says:

    Hi Valen,

    It’s been a while since I checked in to see how you were doing. It sounds like we are both on a non-stop treadmill! We always seem to have something going on about the same time. In September I was rushed to the emergency room twice. The first visit was for low magnesium and sodium levels. A week later I had developed pneumonia. I was hospitalized for three days.
    After that I began to improve, so I made a trip to see my mom. I was feeling fine, with occasional intestinal issues. Over the holidays my family developed the flu, and I began with intestinal issues again. I went for lab work last week. On Friday I got a call that I needed to get an Epogen shot. Yesterday my doctor informed me that my kidney function was 15 percent due to renal anemia. I have contacted the Mayo Clinc, and am awaiting their reply. I am hoping that the shots, and intense hydration will improve the situation. The day before my appointment I was running with my dogs at the dog park. You never know what’s waiting around the bend.
    Your positive attitude is hopefully mirroring my own. Know that I am thinking of you as we both go forward with our next adventures.

    XOXO
    Karen

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