Valen in the hospital in York, Penn.
In a split second our world and our health can change dramatically. We can go from being healthy to severely ill, thinking we are fine while relaxing on the couch and then spiking a fever and dry-heaving while calling 911. This happened to me at the beginning of May, two days after I paid my respects to my grandmother in my birthplace of York, Penn.
Shortly after arriving at the hospital and being evaluated in the emergency room, I was admitted to York Hospital and spent 10 exhausting, concerning and stressful days in a hospital room 2,692 miles from home. It was quickly determined that I had sepsis, a potentially life-threatening blood poisoning from infection. I’ve had sepsis several times over the past couple years for varying reasons. When I was septic six months ago, they discovered that the bacteria in my bloodstream was klebsiella pneumonia and this time it was that same bacteria again. This was very concerning and the doctors did many tests and scans to try and find the cause. However, no answers were revealed.
Valen getting her IV cleaned.
It was an emotional rollercoaster while I was in the hospital. The first night I was there, I had the worst rigors to date. Rigors are a symptom of sepsis, along with low blood pressure and high heart rate, which I had as well. I woke up at 2 a.m. unable to catch my breath and with all over convulsions. I could not get my body to stop shaking for over half an hour. I haven’t been that scared in a long time. My nurse said that she has never seen rigors that bad. She was so kind and comforting and sat with me for a long time until I was able to relax.
On top of everything else, I had the stress of being across the country from home and my husband and the worry of what I was putting my parents through. Then there was the concern of all of the tests and what the outcomes would be. Also, I was stressed about having to make big decisions, like whether to take an oral antibiotic when I was released from the hospital or stay in Pennsylvania over a week longer to get daily IV antibiotic infusions. An extension of this decision was to determine whether to get a PICC line, which doctors were against for fear of infection, or try to keep a peripheral IV working for a week so I could get the antibiotics intravenously. Throughout my stay, I was reaching out to my transplant team at Johns Hopkins and my doctors in California to keep everyone in the loop and make sure all of the doctors were communicating and making the best decisions for my health. Through it all, I was trying to rest, stay mentally grounded and positive.
Valen in the ER, her father holding her hand.
During this recent health hiccup, I thought a lot about my grandmother passing and the PKD community. I understand that at 93-years-old, my grandma was tired and it was too much of a fight, physically and mentally, to recover from her fall. I also pondered how stressful and challenging our PKD journeys can be and how important it is that we focus on having a strong will to survive. It may seem easier at times for us to lay back in our hospital bed and let our resolve to fight diminish, especially when fighting negativity and our health problems makes it double the battle. It is incredibly important, however, for us to approach things one health issue and one day at a time. We must trust in the power of positivity, love, support, our will to fight, and our will to survive.
Valen the day she left the hospital.
From the moment my mom dialed 911 on May 9, my trip home to support my family turned into a trip of my parents supporting me. My planned stay more than doubled in length until I was healthy enough to return home to California. Keep an eye out for my next post to learn about my treatment post-hospital stay in PA and how I am doing today.
In the meantime, what helps to keep you fighting and maintain a strong will to survive?
Dear Valen,
I so admire your strength of spirit and perseverance. My brother told me he had sepsis last summer and was also hospitalized for quite a while (he had a transplant 2 1/2 years before). I can’t imagine how scary it was, but I’m so glad you made it through! Take care and I wish you well in your recovery!
love, Chris
Dear Chris,
Your sweet sentiments and well wishes mean a lot, thank you! I hope your brother recovered well from his sepsis episode and that his transplant is doing great! It is quite scary to go through. I’m happy to be back in CA to continue the search of finding the source of my sepsis. Do you know what caused your brother to get sepsis? Hugs!
I’ve been extremely lucky that I haven’t had any major health issues from PKD, but I did spend hundreds of hours in the waiting room at a dialysis unit as a caregiver and observed in a unit for 100 hours for a college internship. From my observations, the patients who felt unloved and abandoned by their loved ones gave up their wills to survive most often. Only a few that felt loved gave up just because their energy levels and pain lasted for decades.
Hi Amy,
I’m so glad that you personally haven’t had any major health issues with PKD, but you sure have endured a lot as a caregiver. Thank you for sharing your observations. I would agree, as my parent’s love and Noah’s love keeps me fighting and gives me something to look forward to. Caregivers are the best! Thank you for being an amazing caregiver.
Oh Valen! The struggles you go through with such a positive attitude! You’re simply amazing! My family is my will to keep fighting and persevere! Well wishes to you!
Thank you very much sweet Lana! I appreciate you sharing your will to keep fighting. So happy you have such a wonderful family! Your continued support means a whole bunch! Big hugs!
I admire your strength and calm through so many harrowing experiences. You are truly a trooper. Wish you more good days than sick days.
Thank you for your kind sentiments and well wishes! I wish the same for you and the rest of our PKD family…”more good days than sick day.”
Thanks for sharing, I am not really good at planning ahead, I just fade my thoughts each night with meditation about having Pkd. Hopefully I’ll have something positive to share one day.
All the best to everyone out there dealing with this.
V
Dear K,
Thank you for reaching out and reading my blog. It is an honor to share my journey with PKD and if you’re interested, please feel free to share yours with all of us. Connecting with like-minded individuals has been a positive light in my life. I hope your health is stable and if there is any way I can help you along your path with PKD, please let me know. PKD Will Not Beat US! Wishing you all the best! Hugs!
Thank you for sharing your journey with us. What a beautiful gift you are. I have watched my Mother die and my sister get a kidney transplant. I have stage 3 ADPKD. My problems are minimal at this point. I also have been involved in a Kidney study. The drug I’m on is working well and hopefully is slowing the disease down. I fought for my Mother for a long time. I empathize with you. I pray that you recover and get better. Are you waiting for a Kidney? God bless you dear one.
You are so welcome, Nancy! It is an honor.
I’m sorry for all that you’ve had to witness and endure because of PKD. I’m glad to hear that your problems are minimal at this point and hope it stays that way for a long time. That’s fantastic that the drug you are on is working well.
I was diagnosed at 10 and had both of my kidneys removed at 18 and was on dialysis and received a transplant when I was 19 – almost 15 years ago. So grateful!
I hope the medicine that you are on slows your PKD down enough that you won’t have to endure what you witnessed your mom go through. Hugs!
I meant medication not meditation.
I need to start using my eye glasses !!
Valen – I hope you get answers. Please let everyone know when you uncover the mystery of your sepsis. You keep me fighting for my son who has PKD. I learn so much from you. We are only 5 years into our journey. The love and support of my friends has been amazing and they give me strength. The people who have leaned on me with their own struggles since I am so open with ours has created a new meaning in my life. The corner stone of my strength has been my fellow PKD parents and PKD community who have embraced Logan with open arms. Thanks for all you do for us Valen.
Thank you very much Ann, me too! The next step will be a PET scan.
I can’t thank you enough for sharing your thoughtful sentiments. It really helps fuel my passion to keep sharing. I can connect with you and your family on several levels. With enduring health issues since a child, I have such compassion for Logan and what he has/will/is going through. Also, now as an adult, I know how much my parents have dealt with and how hard it is to be a caregiver, which makes me have great empathy towards you.
I’m so glad that you have a wonderful support system. That makes a huge difference. It is amazing what being open about your journey gives you in return. It makes me happy that you are experiencing the positivity of sharing your story.
I hope to be able to meet you and Logan some day. You are a strong and wonderful mother. Logan will do great because of the love you and your family give him.
Hugs!
wow ! i am glad your back home safe and sound and that you are hopefully over that episode ..i so admire your fight to be strong when all feels like your drowning in defeat. Keep going so many cherish you and your will to keep going encouraging others and for you to be by the ones you love. love is a great healer and for many to love you says it all. I do wonder what one does when they are in a situation of pre excisting conditions and be able to afford the ongoing bills that keep coming in with the healthcare not looking too good for all that have medical issues this is hard. our deductable doubled this year and dialysis is expensive and all would of been fine with donating for me but now if one donates they d have a pre exsisting condition with one kidney.. do you have any suggestions on how to keep afloat with the way healtcare is going?? not everyone has great insurance coverage … praying you wil stay well for a very long time and inform all how and what can be done to avoid sepsis,,may you enjoy yourself now and always love to you and your family and your kitty
Hi Dominique,
Great to hear from you! Thank you, I hope I’m over this episode too.
You are so sweet! Your heartfelt words of support are very touching. I can’t thank you enough.
I can sympathize with the concerns of health insurance and all of our medical bills. This was a huge concern post-transplant 15 years ago, to get a fulltime job right away so I would have health insurance. I’m not sure as far as “suggestions on how to keep afloat with the way healthcare is going.” I did reach out to the PKD Foundation and asked if they had any advice for you. If they do, I will be sure to share it.
If I learn anything else on sepsis and how to avoid it, I will be sure to write about it in a future post. The next step for me is a PET scan to see if they can find any answers.
Thanks for reaching out. I hope your health is well. Your friendship and support means a lot! Mr. KaliKat and I send our love 🙂
Hi Dominique,
I connected with the PKD Foundation in regards to your questions about health insurance. Unfortunately, I don’t have specific insurance advice to give you, however, I wanted to share with you that there are in-district meetings coming up from late July through Labor Day. You may be interested in contacting your Senator and setting up a meeting with them to share your concerns as a PKD patient and to help advocate for those living with PKD and other pre-existing conditions. Here is a website with information on how to get a meeting set up:
https://pkdfoundation.staging.wpengine.com/get-involved/advocacy/tools/congressional-office-visit/
Sorry I couldn’t answer your question better. Please let me know if you have any other questions. Thanks again for reaching out. It is always wonderful to hear from you!
aww thanks so much valen i do appreciate all you found out and your thoughtful words.. i need that i dont have much luck with finding a donor and ive tried so many things..im thinking of just waiting on that call my coordinator said it will be another year anyway to be on the list due to type O .. i will use the website you gave me i hope we can all join together for all involved with not only pkd but with any pre exsisting conditions.. ps i was so close to getting a kidney from my son but he doesnt want to end up with a pre exsisting status with one kidney…love to you and your family be well and try and have more good days you so deserve to be happy and pain free
Oh my, I’m very sorry you were so close to receiving a kidney from your son and it did not happen because of pre-existing status. That makes me sad. Has there been anyone else that stepped forward to get tested to be your donor? If they did and they were not a match, they could participate in the donor swap program.
You’re so sweet! I wish the same for you…happiness and pain free days…AND to receive the gift of life very soon!!!!!!! xo
Valen,
As I lay here reading your blog, I have been out of the hospital for two days…sepsis. I had no idea just how common it is among PKD patients. This was my third go find with sepsis and I’m so over it too. Lol Your blog is inspirational and your kind responses to folk’ s responses, touched my heart. I have realized something though, I believe that I need to get more involved in the PKD community. Not only for myself, but for my sweet husband. Without his constant love and unwavering support, I would not have made it this far. I hope that you’re well on your way to being back to 100%!
Hi Laura,
Aww, thank you very much for reaching out and for your sweet sentiments.
I share your same thoughts on sepsis…I’m so over it, too! I’m very sorry that you too have endured sepsis several times. It is scary!
They are still trying to find the source of my sepsis. Do they know what is causing your sepsis?
I live in Northern, CA. Where do you live? If you are interested in getting more involved in the PKD community, I’d be happy to help you.
It is wonderful to hear that you have amazing support in your husband. I am lucky to have that as well and am so grateful.
I’m starting to feel better, but in the limbo phase of wondering if the sepsis will return since we are still trying to find the cause of it. I have a CT scan tomorrow and then more testing the end of the month. I hope the same for you…that you’re well on your way to being back to 100%. I look forward to hearing from you. Sending healing hugs!
I am so sorry to hear this news. I haven’t presented symptoms like sepsis or sezures. But I do remember my Mother presenting them. She asked me to fight for her and I did with all my might. I know this disease and what my future holds. Gods greatest blessings to you dear one. Your in my prayers. Your story touched my heart.❤️❤️❤️
Dear Nancy,
Thank you very much for your sweet message full of kindness, support and encouragement. It means a lot. I’m so glad to hear that you have not endured sepsis, but sorry that your mother has. Do you know what caused your mom to get sepsis? Wonderful that you are fighting with all your might for your mom. It is very special when we have family, like our parents, whose love helps give us strength to fight PKD. I hope your health is well and wishing you all the best. Hugs!