PKD Connection Blog

Go to: PKD Blog
Go to Category: Knowledge, PKD Will Not Beat Me

Déjà Vu All Over Again

Last Saturday I was sitting in the recliner in my parents’ living room in a daze of illness as mom got off the phone with 911. I heard mom say, “We are supposed to unlock the front door, put the animals in their cages and pack Valen’s medicines in a bag.” I felt so weak as I tried to mutter to dad what meds I needed to take with me. I faintly said to mom, “jewelry,” and she came over and removed my necklace and ring. Mom pulled the living room table away from where I was seated to clear the path from me to their front door. Dad was sprinkling kitty litter on the front steps in hopes to create traction because they were covered with ice. It felt like déjà vu, surreal yet very familiar as the front door opened and I heard a man loudly say, “Ambulance.”

Ambulance

I handed the emergency medical technician my detailed medical spreadsheet and tried to explain this sudden onset of illness. I had stomach pain, began to dry heave, was very weak and had uncontrollable tremors. I immediately took my temperature and it was 99.7. My nephrologist instructs me that anytime I have a fever I must go to the emergency room. The abrupt onset combined with the severe symptoms told me that immediate action needed to be taken.

The EMT’s wrapped me in blankets, secured me in a patient-carrying device and carried me to the ambulance. They then strapped me on a gurney and lifted me up into the ambulance. They proceeded to place heat packs under both armpits, between my legs and on the back of my neck because my body was constantly shaking. We then began the trek to York Hospital.

Upon arrival to the emergency room I was placed in a private room because I am a transplant patient. An IV was administered; blood work and blood cultures were drawn. My temperature was rising; I had low blood pressure and high heart rate. Once blood work results were received and combined with my symptoms, it was determined that I had pancreatitis and sepsis, a blood infection. They quickly hydrated me through my IV and started me on a broad-spectrum antibiotic.

Dad & I holding hands in hospital

The test results indicated that I had a urinary tract infection (UTI) however my body did not present any symptoms. The transplant medicines that I take made my body suppress the symptoms of the UTI and I did not feel ill until the infection got into my blood stream. The doctors at the hospital commended me on several occasions for being so aware of my body and for taking immediate action because if I had waited longer my health would have only gotten worse by the hour as sepsis is very dangerous if untreated. It can attack your organs and spread to fresh wounds, like the incision site from my recent two back surgeries. Fortunately my body responded very well to the IV antibiotics and the results of my blood work tests have shown improvement. They released me from the hospital on Tuesday on oral antibiotics in hopes that they will completely kill the infection.

Cutting hospital wrist band off when I returned to my parents houseGet well balloon

This year has consisted of two back surgeries, a spinal fluid leak, sepsis, pancreatitis, and three hospital stays in a time span of five weeks. I am reminded it is imperative to be aware of and listen to our bodies, as only we know them best. Also, immunosuppressant medicine can mask symptoms that would normally present themselves in a healthy person. My dear husband was praising me on the telephone for knowing ‘when to hold em’ and when to fold em’ in regards to taking action immediately when I am not feeling well. I am now back at my parents’ house recovering and I remain confident that our body’s mission is to heal; we just have to guide it in the right direction.

Comments

  1. Amy Dixon says:

    Get well soon! And I hope that your husband gets to be there for Valentine’s Day.

    1. Valen Keefer says:

      Hi Amy,
      Thank you for your well wishes! Unfortunately Noah and I were not together on Valentine’s Day, but thanks to Skype we were able to see each other! 🙂

  2. Aida Cortes says:

    I also suffer from PKD and I have and not so good. You 100% about listening to our bodies. Feel better.

    1. Valen Keefer says:

      Hi Aida,
      I find that the not so good days make the good days even better. 🙂 Thank you for your well wishes!

  3. Aida Cortes says:

    Good days and not so good days*

  4. Marsha Byers Etnier says:

    Valen, what can I say except that you are amazing! I cannot image all that you have/and are continuing to go through. Will keep your and your hubby, and your parents in our prayers. We send you a Big bouquets mixed with love, prayers, blessings and healing to be shared by all of you. xoxoxoxoxo <3 Marsha

    1. Valen Keefer says:

      Dear sweet Marsha,
      Thank you very much for your beautiful bouquet of sentiments. You are so thoughtful and I am grateful for your support and prayers. Big hugs! xo

  5. Deborah Kelly says:

    You are a true inspiration! I wish you the best and a speedy recovery. I hear myself saying PKD will not beat me all the time.

    Deb xx

    1. Valen Keefer says:

      Hi Deborah,
      Thank you so much! Makes me smile knowing that you join me in saying ‘PKD Will Not Beat Me.’ Keep that positive spirit.

  6. Mary says:

    Praying for a speedy recovery.

    1. Valen Keefer says:

      Hi Mary,
      Thank you very much for your prayers.

  7. Art says:

    Valen,

    I am so happy you took the action needed in a very timely manner! You continue to amaze me! Gods lessons and favor…..
    I received this via email from my wife as I have been off of Facebook for a couple months. I guess the additional good news is ” no rejection “. It is my biggest fear I will reject mine, but now I have positive hope knowing what you have been through and survived a rejection episode. Bless you for keeping the rest of us inspired.

    Heal completely and soon!

    Art

    1. Valen Keefer says:

      Hi Art,
      Thank you very much for your thoughtful message. Rejection is a big and real fear when receiving the gift of life. I always thought that I might wake up one day and it would all of a sudden happen. My nephrologist comforted me by letting me know that this is usually a very slow process and that his goal is to follow my progress and have me receive another transplant before I get to the point of needing dialysis again. I know I must keep myself as healthy as possible so that an unexpected infection will not jeopardize the health of my kidney and cause a sudden rejection. Thank you for reaching out and for your kind sentiments. Keep that positivity as I believe that is half the battle. Wishing you all the best!

  8. Dian Davis says:

    Dear, Valen:
    I have been following your site for some time, now, and I am sorry your year has started off with so many health challenges. I am praying for you. Thank you for sharing your story it does help as we go through our own hills and valleys. I believe we share the same mantra: ‘PKD Will Not Beat Me’…. This disease is prevalent in my family. Our introduction to it was in 1969 when my grandmother (on my mother’s side) died from renal failure. All five of her children were tested and found positive with it. A large majority of my generation are positive, and also, the next. I had a transplant in 2010 the year my mother died. I am learning to live with all of the post transplant issues and all of the grief and sadness that comes from seeing the effects this disease brings to the members of my family. That does not exclude the celebration of the successes in my families lives, each one a miracle in itself. Keep holding up the banner, Valen, what you do and how you do it matters to those of us that are in the trenches with you. Sincerely, Dian

    1. Valen Keefer says:

      Dear Dian,
      Your message gave me goosebumps. Thank you very much for your support, kind words and sharing your family history of PKD. This disease brings sadness yet things to celebrate when we are given a second chance by way of a kidney transplant. I am sorry you lost your mom and thankful that you received a transplant that year. Your last sentence touched me greatly. Thank you for the encouragement to keep writing and to keep sharing. I wish you all the best as we continue on this similar journey. Please stay in touch and take good care!

  9. Jackie says:

    I’m so glad you’re back on the healing train! You’re amazing!

    1. Valen Keefer says:

      Hi Jackie,
      Thank you, me too. I am hoping this ripple effect of health hiccups has subsided and I can start to recover now. Thank you to you and your family for all of your love and support. xo

  10. Judy says:

    What a important message! I also have had a transplant. I waited to long to act on symptoms and could have avoided a ER visit. I can always tell if something is off but give it to long to get better by itself. Thanks you for your post and I’m so glad you are better.

    1. Valen Keefer says:

      Hi Judy,
      I am glad that you were able to connect with this blog post. Congratulations on your transplant! I am sure your ER visit was a lesson learned to follow your gut when you know something is off. Wishing you the best and many healthy years with your gift of life.

  11. adriana says:

    I want to say so much which is why I try not to say anything sometimes (or I say too much!) but on this one you have shown the most valuable lesson we can learn which is ‘listening to your inner voice and knowing when to go to the ER’. This becomes quite difficult when you are used to a life of ‘some kid of pain or discomfort’ and you don’t want to ‘cry wolf’ every time you feel something ‘bad’. It is a work in progress. I am probably more aware of ‘a bad headache’ because I don’t get headaches in general and I had the aneurysm in the past. So the few headaches I do get I have to monitor very closely. Was I on my lap top nonstop? Is it worse than anything I know to be normal? It’s a lot of quick thinking but if I feel really really uncomfortable, I go to the E.R. This happened to me Feb 2013. In this case it turned out to be a hormonal issue which was corrected by April 2013. I’m just happy that you write about everything that matters. You have so many loyal followers and we all need reminders to PAY ATTENTION – KNOW YOUR BODY- you never cease to blow me away with the topics you choose. I just sent your website to my mother in law in PA (90 minutes from YORK) so she can learn more about PKD and ‘my hero’ that I speak of!

    1. Valen Keefer says:

      Dearest Adriana,
      I am so thankful that you connect with a lot of my posts and that you share them with your family. I enjoy hearing from you and your words of wisdom. I agree that when you are so aware of your body, you don’t want to be alarmed with every new feeling, but life is a work in progress and we learn more about ourselves over time. I look forward to the day we meet as I know there will be hours of conversation. 🙂

  12. Adrian says:

    Hello, I don’t know if this is the place to ask this kind of questions but maybe someone else has experienced something similar..

    I am a 27yr old male diagnosed with PKD and Hypertention and PLD about 3 months ago. The this is the following,
    For the past couple of weeks I’ve been urinating blood quite often.. 2 or 3 days a week. Then it stops for a couple days, than it continues..
    They have done ct scans and everything seems normal. They cultivated my urine and it came out normal..
    But honestly, I feel like I didn’t get any attention or importance to my new pcp..

    Should I be concerned about this?

    1. Valen Keefer says:

      Hi Adrian,
      I am not in the medical field and can’t give any medical advice. However, as a patient, I had blood in my urine often. When this would happen, I was having cyst bleeds. I would usually have pain in my lower back when a cyst rupture would occur and sometimes a fever. At times they would pass quickly and the blood would disappear from my urine and other times I needed hospitalized. Did your doctor mention that this could be the cause?

Leave a Reply

Your email address will not be published. Required fields are marked *