My left hand rested on my lower back while my right hand leaned on the couch attempting to hold myself from falling to the ground in excruciating pain. It was the kind of PKD pain I had prior to my bilateral nephrectomy. I managed to get myself in a seated position on the couch as I waited to hear back from my doctor’s office. My phone rang and the nurse on the line said, “Valen, I talked with Dr. Bixler. He wants you to go to the emergency room immediately.” I have heard those words numerous times in my life. I instantly put my ‘game face’ on.
It was the weekend before my 30th birthday and I, of course, did not imagine it would unfold like this. My back had been bothering me for about two months. I attributed the lower back pain to all of the sitting I do throughout the day. I winced in pain over every bump in the road as Noah drove me to the hospital. He helped me out of the car at the emergency drop-off. I could barely walk. I placed one foot in front of the other and grabbed the railing in pain, as tears streamed down my cheeks. A nurse rushed out with a wheelchair and took me in to register. I handed her my medicine and medical history spreadsheet. My jaw was clenched with pain as I informed the nurse that I had scoliosis back surgery when I was in 8th grade, but have not had any back pain since.
I sat in a wheelchair in the waiting room for the next available room and reflected on the day thus far. I felt fine that morning at work. It was a gorgeous day and I was looking forward to stretching my legs in the afternoon on a nice hike in the canyon. Then in a split second, I went from “just fine” to “unable to walk.” My foot was tapping and I was antsy in my wheelchair as the lower back pain was now radiating around my hips and down the front of my thighs.
I looked up as I heard the noise of the automatic hospital door. My name was called and I was wheeled back to room #11. Little did I know that my room number would match the amount of times I was stuck to get an IV because the nurse couldn’t find a good vein. I looked like a pincushion from all of the needle marks and bruises. Friday afternoon soon blended into Saturday and before I knew it, Sunday arrived. They did an X-ray, CAT scan and MRI. It was determined that I have two bulging disks that are compressing my nerves and causing all of my pain. They have me on constant pain meds and a high dosage of prednisone to try and help with the swelling.
I am an answers-driven person and the doctors do not know why this happened, how long it will last, or what I will have to deal with in the future because of this. They said that my last few vertebras are not connected to the Harrington rods like the other ones and take the stress and twisting of my entire back. The doctors could not say if this was the reason for my pain.
This was all very sudden and I’m still trying to comprehend it. They said that I will have to make “lifestyle changes.” I can’t seem to shake those two words. Right now I am to constantly take pain meds and be laying down in hopes that the meds will mask the pain and my body will be able to heal on its own. I have to see a neurosurgeon and do physical therapy when some of the pain subsides. The doctor also said I will be doing daily stretches and activities, such as pilates.
On my 30th birthday, I was following the doctor’s orders of laying on the couch and taking pain meds. I looked to my left and smiled when I saw a pretty flower arrangement with a balloon that read ‘The Big 30.’ My eyes then glanced to the left and saw my walker. I thought, “What is wrong with this picture?” Sometimes I like to daydream and imagine what it would be like to wake up care-free and not have to get my meds out for the day and to not have to worry about what my quality of life might be like 10-20 years from now. The past few days I have been trying to practice what I preach, which is not always easy.
However, this is life; full of trials, full of unknowns, full of tests. It is ok to get frustrated, as we are human. I then use that frustration to fuel myself to keep fighting. It is not easy to be taken out of my routine, but that gives me time to really think about my life. I am going to listen to my doctors and do all I can to let my body heal on its own. I will make whatever lifestyle changes necessary and these changes will become my new ‘normal.’ One day at a time and one foot in front of the other. We must find a way to smile, to laugh and to enjoy every day. To focus our vision and energy on what we need to do today and the decisions we need to make to have the best quality of life today, because we do not know what the new day will bring. Once I get back to my new ‘normal’ I can get back to doing what I love, and that is living life to its fullest.
Wishing, hoping, praying for a speedy recovery.
Thank you Mom! I can feel your love from thousands of miles away! xoxo
Your story is inspiring. We are about to begin our journey with transplantation. My husband and son both have PKD. I just wanted to thank you for sharing your life and experience with other’s that are facing the same trials. Prayers to you!!
Thank you Melissa! It is my honor! Wishing you and your family all the best as you begin your journey with transplantation! You are about to see a miracle with your very own eyes!
You are in my thoughts and prayers throughout the days! Miss you my beautiful friend 🙂 Wish I could fly out and be with you.
Thank you dear Trinity! Miss you too Sista! 🙂 Hop on that plane! 🙂
Valen, I wish you a speedy recovery and we are waiting to read everything about your “new routine” … keep on fighting because the 30s are the best years 😉
Thank you so much Flavia! I am looking forward to all of the wonderful surprises and adventures that will unfold in my 30’s! 🙂
Once again, your strength and your wisdom are powerful inspiration. Sending positive energy your way for a full recovery.
Thank you Yvonne! I greatly appreciate those positive vibes! 🙂
Valen, I wish you well and a speedy recovery. You have the best attitude towards everything and your blog is inspiring. Now 36, my PKD symptoms really kicked in around 30 (much earlier for my brother). So, in order to make 30 sound so much better, I declared it “XXX”. I thought it sounded like a cool adventure 🙂 Hang in there and stay strong!
Hi Jennifer,
I love your positive spirit and “XXX.” I will join your cool adventure club and call it “XXX” as well. Thanks for making me smile!
I love your positive attitude. I just met my 3 month mark from rec a kidney
The meds are an adjustment but not as bad as I thought they would be. I was two days from going on dialysis and three days from my bday. What a miracle and you will overcome this set back too. Just keep positive and look forward to more of your inspirational comments. Get well.soon
Hi Tracey,
Congratulations on 3 months! So awesome! Very happy to hear that you are adjusting well to your meds. When I take my meds 3 times a day, I am so thankful as it is much better than being on dialysis. Thank you for your encouragement and for following my blog. Sending strong kidney vibes your way! 🙂
I am so sorry that you have hit another stumbling block. Sometimes it seems like if it is not one thing it is another. I love that you try to make the best of your situation. I also feel like there is something so amazing about being in your 30’s. Look at all that you have already achieved! I am on a health “roller coaster” myself. I had an amazing week in Hawaii last week. This week I am not sure how I am going to survive. Somehow, day by day, we get through theses things because we are strong and we can do hard things! I know we have never met, but I feel such a kindred spirit in you. Keep fighting! God bless you! I hope you are hiking again soon:)
Dear Vicki,
It is a special thing to feel a connection for someone that you have never met and I feel the same way with you. As I sit here in pain, it is nice to know I have friends out there pulling for me and can relate to the ups and downs, have the same zest for life, and a fighting spirit that says PKD Will Not Beat Me. Am I recalling correctly, that you had asked for me to write about the topic of having children? If so, please know that I think about it daily and will be writing about it soon. Thank you for your support and friendship!
I don’t remember asking about the children topic. I know it is a tough one. When I was diagnosed I swore I would never have kids to pass it on to. Then I grew up and realized a lot of things. I now have 3 beautiful children that I wouldn’t trade for the world. Their giggles are what keep me going on hard days. I don’t think there is one right or wrong answer. I think it is different for everyone. I know that I am glad my mother had me (and so is she!)
I am mad that you got stuck that many times and the IV ended up in your wrist! I wish I was there because I am an IV nurse and I would NEVER do that to someone 🙁 ouch!
Hi Vicki,
I share your same sentiments on the children topic. I am so very grateful that my mom had me and I know she feels the same. I know it was quite an IV circus. They had 4 different people that tried. Got stuck on the top of my hands, both wrists and different spots up my arm. At one point I was thinking…give me that needle and I’ll take care of this…ha!
Sending prayers and strength RIGHT NOW! Love from our entire family, Valen. I’m sorry you are facing another unknown trial and I will be looking forward to hearing about your next beautiful hike!
Hi Lisa,
So wonderful to hear from you and thank you for your love. I wish I could give all of you a big big hug. Miss you and love you all dearly. Please tell everyone I said hi! xoxo
Hi Valen,
As you lay on the couch following your doctor’s advice, please know that you are not alone. So many people are thinking of and praying for you-me being one! You have encouraged, loved, and supported so many others and now that is all coming back to you. Bask in the love and support and the fact that you are 30! It is an amazing age to be…congratulations on this milestone.
May your walker days be a brief blip on your life’s radar screen!! Sending you all my encouragement, love and support,
Cathy
Hi Cathy,
How very sweet of you to send me this beautiful and much needed and appreciated message. It veeeery hard for me to slow down and I have been not listening well the past few days and paying for it with my pain. I am going to focus on what the doctors are telling me to do and rest these next few weeks so that my body can heal properly. Your friendship and words will give me strength to do what I need to do…relax, which is oh-so hard for me. Thank you for the wonderful encouragement!
Hi,
I have pkd as do three of my four siblings. When I was diagnosed at 25 my father was so upset (I was the third in my family to be diagnosed). He wished that he hadn’t had children but of course he didn’t even know he had pkd until after we were all born. I remember at that time saying “well I am glad to be here”. I have had a great life with a wonderful family. After I was married I decided to have children and now have four wonderful children. I did wonder if it was the right decision but then I thought well with research maybe things will be different for them if they too should be diagnosed with pkd. My oldest is now 18 and she told me that she just assumes she has pkd and that way if she doesn’t then she will be happy but if she does it won’t be a surprise. Her way of coping I guess. It is a personal decision wether one should have children but for me it has been a blessing. I am now 17 months post living donor transplant despite having an antibody level of 98 out of 100 and life is good. I did have to do peritoneal dialysis for a short while (great option)but the thing is one needs to have hope and at the same time be realistic. There are so many wonderful people in the medical profession trying desperately to help people to have a better quality of life. I am truly grateful. The one thing I find amazing is the wide variety of symptoms people with pkd experience. To Valen I hope that you continue to feel better and that you will be able to get back to living the life you want. Thoughts are with you and all those dealing with this disease.
Hi Paula,
I thoroughly enjoyed reading your comment. Thank you so much for sharing your beautiful family history. It gives us all a realistic and very positive light on how your family has been affected and deals with PKD. I commend you for how graceful and how positively you live with PKD. This is really great for everyone to hear and I’m so glad that you shared this with everyone. I hope you will continue to follow this blog and share your experiences and thoughts. Wishing you and your family all the best!
Paula,
I love your comment. There are so many diseases/illnesses out there. Ours could be much worse! I already know that one of my three children has PKD, but I think it will be so different for her because of all of the advancements (at least I hope). Congrats on your transplant! I will be going down that road in the next year or so and I love to hear success stories!
Vicki
Hi Valen,
I have read your book and I am so proud of the person you are. You are an inspiration to me and to anyone who has had any contact with you. Please know I am praying that you will soon feel relief and be able to get back to a more normal routine.
Phyllis
Dear Phyllis,
Thank you so much for reading my book and sharing your touching comments. Your heartfelt words and prayers help give me encouragement that I have people out there pulling for me and that I will be back on my feet soon. It means a lot to hear this.
Hi Valen,
I’m so sorry you are dealing with this! I am sitting at Phoenix Airport after a grueling month (I will fill you in later) and just read your last four posts. You do have a special gift for touching others and not only those with PKD. Deep breaths, girl, and this may not be the 30 you imagined but you are here and pretty wonderful despite the challenges thrown on your path. Keep choosing hope for each day to surprise you and bless you – it happens as you know.
Big hugs,
Vicki
Hi Vicki,
Thank you for this beautiful, heartfelt and encouraging comment. I appreciate your words of support and love. I am very sorry to hear that you have had a grueling month. I hope things are moving in the right direction for you and things are getting better. Thank you for your friendship. Big hugs back!