PKD Connection Blog

PKD Will Not Beat Me

We’re all human

Valen getting an infusion before her trip to Aspen

Sometimes the littlest thing at an unexpected time can trigger emotions that have been building up for a while. For me, it was a hospital food tray. On Dec. 2, 2017, I woke up severely ill with a high fever. This was the fourth time I had sepsis in the past year. Noah and I recognized the signs and went to the emergency room immediately. We were days away from our big trip to Aspen, CO, where I would receive the Bounce Back Give Back Award at Chris Klug Foundation’s Annual Summit for Life event. Noah and I were so excited for this trip and I was devastated at the thought of missing it.

As we headed to the ER and went through the normal drill of tests and being admitted, missing out on our trip was all I could think about. I knew I had sepsis again from primary sclerosing cholangitis and I couldn’t believe this was happening now. I even started taking antibiotics a week before our trip to try and prevent this. All I needed was one week of being healthy for Noah and I to go and enjoy ourselves together.

Valen, Noah and family at the Summit for Life event in Aspen

Before I was transferred to my hospital room, Noah and I started discussing what we should do about our trip because we knew I’d be in the hospital for several days. As we were talking, Noah shared with me that his two brothers and their wives, who we rarely get to see, had planned on surprising me by joining us in Aspen for the event. As I envisioned what it would be like to be in Aspen and surprised by all of them, I was so upset by the idea that this moment was being taken away from me because of health issues.

At this point, my dinner tray arrived and the transport person was ready to take me to my room. They started loading my things on the hospital bed and asked Noah if he could carry my tray. As I was wheeled off in my hospital bed, I glanced behind me and saw Noah carrying my food tray and for some reason that set me off. I started crying and don’t think I stopped for the next hour. I was angry about all that Noah has to go through as a young caregiver. I thought how he shouldn’t have to carry a hospital food tray on a Saturday night as he watches his 34-year-old wife get wheeled around the hospital. I was mad that my health was yet again taking something fun away from us. I was so sad at the thought that I would miss out on the huge surprise of seeing family who I rarely get to be with. This was a big event for me and it meant so much that they were going out of their way and traveling so far to be with us. Now the thought of them being at the event and not me did not seem right!

Valen at the infusion center she and Noah found in Aspen

I remember not being able to catch my breath through my tears when my nurse came into my room to introduce himself. Noah was at my bedside trying to console me and I appreciated the way my nurse handled the situation, saying he’d be back in a little while to get me settled in. He gave Noah and I around an hour of time together before coming back into my room. I had so many emotions that I’m not used to feeling and I didn’t like them one bit. I’m fortunate to have an amazingly positive disposition despite all that I face, however, it was obvious that my body needed to let all this out. I couldn’t wait for it to be over so I could get back to feeling like my normal self. Once my emotions settled down, I looked at Noah, who was looking at his phone, and I asked him what he was doing. He said, “Looking up infusion centers in Aspen.” He informed me that there was one minutes from where we were staying for the trip. Both of our eyes lit up with joy, determination and hope and we both said, “Let’s do it.”

Valen and Noah with their filter safety masks for the flight from Auburn to Aspen

From that moment forward, Noah and I planned and worked hard with the doctors and infusion centers in California and Colorado to make this trip happen. We went from being admitted to the hospital on Dec. 2, discharged on Dec. 5 and flew to Aspen on Dec.7.

We are all human. We have emotional moments. It is important to have these moments, but then quickly get focused and back on the right track. I will forever be proud of Noah and myself for how we faced this health hurdle and what we accomplished together. I’m happy to say that we made the trip to Aspen. I felt great the whole time, thanks to my doctors and the Aspen Infusion Center. We saw all of our family and I received the Bounce Back Give Back award and surely lived up to its name. Emotions can be powerful in a positive or negative way. It is ok to cry and get mad. Let that negative energy out and use it as fuel to do something positive.

Valen and Noah enjoying the view in Aspen

How do you handle your emotions when going through health challenges?

Comments

  1. Colette Kiszka says:

    Hi Valen and Noah. First of all how blessed you are to have Noah who takes such good care of you. My husband is the same way – bends over backwards to take care of me on my bad days.

    I’m at work trying not to cry as I type this because your story touched my heart.
    I’m the same way – I am a very positive person, but every now and then my body needs to empty all the negativity I have built up inside. I do that by listening to music, crocheting, or in the summer, raising and releasing monarch butterflies. So right now I’m doing really, really well emotionally because I’m knee deep in caterpillars, etc. 😉

    I, too, feel how important it is to give into those “weak” moments every now and then. Letting go of all that “stuff” seems to strengthen me emotionally and physically and I get on with my day-to-day events.

    I was diagnosed 30 years ago with PKD and so far I’m hanging in there, but I do have those moments when something weird will set me off and I spend the next however long it takes having a good cry.

    Valen, thanks for your post and please know that I’m thinking of you and Noah and praying that you continue to be healthy and fight the fight. I’m sending electronic hugs to both of you. 🙂

    God bless.

    Colette

    1. Valen Keefer says:

      Dear Colette,
      Thank you for this beautiful message, it means a lot! I’ve been friends with and working with your daughter since the start of me blogging for the PKD Foundation and I was excited when I saw you posted a comment.
      Your kind sentiments really touched me and I appreciate you sharing your personal journey with PKD and the emotions that come with it. I appreciate you sharing how you stay positive. I’m intrigued by the raising and releasing of monarch butterflies and would love to hear more about how you do this because I think it would be something I would really enjoy too as I love monarchs.
      I’m so happy to hear you are still stable with your PKD and that you have a wonderful husband and caregiver, that is priceless!
      Super appreciate you reaching out and sending big hugs!

  2. Hello my warrior princess! You are such an inspiration to me, it’s terrible how these episodesites can just ruin things but it better when we can bounce back and feel like conquerors. Before my last therapist, I really didn’t have any tools to assist me, but now when I feel overwhelmed I remember to ask myself is there anything I can do to change the situation and if there isn’t I use my calming tool, to refocus and continue. Having help and understanding support system is also great! I am now navigating my way much better. Valen thanks for sharing your life with us and congratulations on your award. 💚

    1. Valen Keefer says:

      Thanks so much for your kind sentiments. Your continued support means a lot! I appreciate you sharing how you positively deal with PKD for others to learn from. Big hugs!

  3. Pam says:

    This story evoked such emotion in me …. wept. Tears of happiness that you both made this event beyond the circumtances. Tears of sadness in the fact that at your young ages … this should not be your life. So very proud of a son so loving and devoted, you have someone extraordinary! Perseverance ….

    1. Valen Keefer says:

      Thank you so much for this beautiful message. It touched my heart! I greatly appreciate your support and love on this journey. I’m thankful and lucky to have such a joyful and kind mother-in-law. I’m grateful for you. We love you very much!!!

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