Nurses search for a vein in Valen’s arm with an ultrasound machine.
A few months ago in November, I was getting prepped for a back injection procedure in hopes of relieving some of my chronic pain. An hour and a half passed with more than ten failed attempts to place an IV in my arm—that’s 90 minutes with several different nurses wrapping my arms in warm blankets, tying a tourniquet around my arm, looking for a vein, prepping the vein, inserting a needle in it, hoping to see blood return for a sign of success and instead seeing fluid build around my vein, indicating that it blew.
The discomfort of the needle wasn’t an issue for me, but it was exhausting to go through the roller coaster ride of emotions of hoping “this time” would be a success and then seeing the nurses shake their heads with disappointment. I was at the medical center for hours for what should have been a 30-minute procedure to get pain relief and instead I was going through more pain.
At that point, the nurses felt they did not have any other options to find a vein in my arms, but I didn’t want to give up. I agreed for them to try in my feet. I was determined to accomplish the goal of the day, which was to get the procedure done. After several more failed attempts, they finally got an IV placed in my foot and we were ready for the procedure. I was so happy I hadn’t given up and had given it “one more try.”
Nurses search for a vein in Valen’s feet.
This definitely was not the first time that something did not go smoothly for me in a health setting. I tend to be that rare patient, whose body makes situations more challenging for myself and/or my doctors. I’m sure we have all felt like this at times. As PKD patients, we endure so many challenges that require perseverance and mental and physical stamina: when we are on dialysis, have a cyst bleed, deal with kidney pain, get a transplant and experience all of the emotions, stress and trials that come before, during and after all of the different stages of PKD. We are required to persevere every day.
Nurses finally find a vein in Valen’s foot for her IV.
When we are faced with adversity, it is important to dig deep for the strength to keep going and give it our all. That day, during my challenging appointment, I was laser-focused on the goal of getting the procedure done and was determined to reach it. Throughout the countless IV attempts, I did not think of the unsuccessful sticks, but rather filled my mind with as many positive thoughts as I could that they would find a vein. I found strength by thinking of those I love and things that I had to look forward to in life.
On the drive home, I asked my husband Noah, “Did I have a number on today? I feel like I should have been given a number. You know, like in races, because it feels like I just ran a marathon.” Some days we may feel exhausted, like we’ve completely overexerted ourselves. When I have days like that, I like to look at myself as a medical athlete who persevered and crossed the finish line. We are strong and possess endurance like athletes. We must never lose sight of our immense strength and warrior spirit and we must never give up. When you are fighting the good fight, I hope you find comfort in knowing you are not alone and that there are others who know what it’s like to live in your shoes cheering you on. I am one of those people.
What helps you persevere? How do you keep a fighting spirit up during health struggles?
Dear Valen, You are a warrior! I salute you and understand your journey as I have survived PKD with a life saving transplant. I wrote a book about my journey that will surely help those going through and the families of current PKD patients and post transplant patients. I write my book to help everybody I can. The book is called Gift: Living Inside Out. It’s available at Amazon, iTunes and my website: http://www.TimLivingInsideOut.com A portion of the proceeds go to the PKD Foundation.
Thanks for sharing your story!
Regards,
Tim Ewell
@timlivininsideout
Dear Tim,
Nice to meet you my fellow PKD warrior! Thank you for your kind words and for sharing your book information. Wishing you all the best and many healthy years with your gift of life.
Bless you. Indeed we fight daily challenges, regardless where in the journey we are. I would like to know if the injection helped your pain. I have a lot of back pain. Have been doing physical therapy but wondering about an injection. I do not have my native kidneys, but believe it’ could be muscle weakness. But who really knows.
Thank you Valen for sharing. What kind of shot did they give you for your back and did i help. My kidneys were both removed. They were approximately 8 pounds each. my liver has cysts too and it is enlarging rapidly to the extent that my rib cage is flared out. I am in constant pain and I do not like being on opiates.
Hi Jaime,
I had a cortisone injection in my si joint. I had both of my kidneys removed 15 years ago. My pain stems from scoliosis, disc herniation, bulged disks, etc. The injection did not help my pain as much as I was hoping for. Seems like a hit or miss thing. I know some people that it does wonders for them and others that receive no benefit, but I thought it was worth a try.
I’m not sure if they give back injections for pain that stems from an enlarged liver. That would be something to ask your doctor. I do know that Pilates helps pain and may be be something for you to consider. I do private one-on-one Pilates sessions and I really enjoy it and believe in it. This could possibly help give you some pain relief. Please let me know if you have any other questions. Take care.
Hello Jan,
I do not have my native kidneys either. My back pain stems from scoliosis, disc herniation, bulged disks, etc. The injection did not help my pain as much as I was hoping for. Seems like a hit or miss thing. I know some people that it does wonders for them and others that receive no benefit, but I thought it was worth a try. I did physical therapy for 22 months and I did not see strength improvement until I started Pilates. I do private one-on-one Pilates sessions and I really enjoy it and believe in it. Maybe something for you to consider. Have you seen a back specialist to assess your pain and determine if it is muscular or structural? I hope you are able to find relief. Please let me know if you have any additional questions. Take care.
☝ TU PUEDES !
Valen,
Thank you for sharing your story. My daughter suffers immense and constant pain most of every day and the doctors have not found any kind of relief for her. Would you mind sharing what the injection was that the doctor or nurse gave to you…..and just as important did it work ?
Thank you and God bless you!
Hi Marc,
I’m so sorry that your daughter suffers chronic pain, too. I know being a caregiver and watching your daughter endure such pain is really hard. I hope you are hanging in there. Is her pain kidney related? I had kidney pain as a child and both of my kidneys were removed 15 years ago. The pain I’m experiencing today stems from scoliosis, herniated disc, bulged disc, etc. They did a cortisone injection in my si joint and it did not help as much as I was hoping for. Although, I know some people that receive immense relief from these shots. I have not met anyone that has received an injection because of kidney pain. Do you see a pain management doctor to try and help her? I do one-on-one private Pilates session and love it. It helps with pain and to gain strength in a healthy and low impact way. I have a friend with very large PKD kidneys and doing Pilates helps her pain. May be something you want to look into. I hope you are able to find an avenue of relief for your daughter. Please let me know if you have any other questions. Wishing you two the best. Take care.
Thank you for the encouragement. Making a copy to put on my mirror! Love you Valen!
Liza Mason
You always make me smile. This warmed my heart. Thank you for sharing, Liza! Love you!
Thanks for sharing your recent journey. The ability to provide pain medication has been one of the keystones of medical care. There’s no reason to be suffering with pain when there are so many treatment paradigms. Addiction to opioids and derivatives is part of the problem and we are all too familiar with the fatal results when powerful pain medications are not judiciously administered.
Hi Eugenia,
Thank you for sharing and for your continued support of my journey and blog. I greatly appreciate it. Take care!
My perserverence comes by never believing something is the last option. If the arm doesn’t work try the hand, the foot, another road to the same end. knowing back and rib pain goes and comes allows me to take a step back on the bad days with the knowledge that I’ll be ok. May we all have the strength to keep fighting the good fight.
Hi Michaela,
Thank you for sharing your immense strength with all of us. I share in your perseverance by never believing that something is the last option. I commend you for keeping that warrior spirit and knowing that you’ll be ok.
Valen,
Wow! Your message really hit home. I just started dialysis two weeks ago and it has been a challenging time! On my fourth run my fistula infiltrated big time (advancing to larger needle size). I watched my upper arm and shoulder swell and get firm while they worked to get me off the machine and apply pressure. I was in tears! It is a week later and my arm is black and blue from my shoulder down below my elbow and still a bit swollen and…I had to return last night for treatment (thank goodness all went well). One more try… to get back up on the horse! And one more try, one more try…. Thanks for your thoughts–they inspire. We do have to cultivate a warrior spirit having PKD and your words help me keep that in mind! And my heart goes out to you going thru all those needle sticks and other fellow PPKD fighters–been there, still there–still here–fighting:)…
Oh dear Nancy, I am sending a big hug your way! I’m so very sorry that your dialysis experience has started off so difficult. I’m proud of you for having a warrior spirit as you keep giving it one more try. When you look at all that bruising, let it remind you how strong you are and how you can get through anything! I’m so happy to hear that your recent treatment went well. I hope they continue that way and that you can get a kidney real soon. Thank you for your sweet sentiments and taking the time to share your experience and bravery with all of us.
Whoops–PKD:-)!
Wow, it seems as though you have gone through so much!!! I have a friend that has struggled with her SI joint for years and she is finally doing better. I do not have back problems, but have had a back spasm that put me down like nothing I ve ever had. It WAS very painful. My husband has had several back and neck fusions and he continues to keep on going. Helping mom now with home dialysis and praying my PKD doesn’t offer me the problems I’ve seen with her. Go warriors!! Carol
Hi Carol,
Wonderful that your friend is doing better. Do you mind sharing what helped her with her si joint? Your mom is lucky to have your support. Having caregivers and help while a patient is so important and it is great that you are providing that support. I’m sure it is hard to watch your mom endure PKD. I commend your strength and hope you stay healthy for a very long time. Yes, Go Warriors!!! 🙂
Hi there,
I’ve been following your journey for quite some time and I can’t help but identify with you on so many levels!
I am turning 30 this year. I have PKD and scoliosis too. Chronic pain has become a huge part of my life. I’ve been for 3 surgical procedures (2 laparoscopic deroofing of renal cysts and 1 needle aspiration). They provide temporary relief…
My kidney function is still amazing. Even though I am truly grateful for this, I can’t help but wonder what my life will be like without these huge, bulky, bloody, painful kidneys. I saw your before and after pictures and for a moment I felt jealous of you. I mean… Wow! What a difference!
I try paracetamol drips when the pain is unbearable. Every drip is like a treasure hunt for a vein. Couldn’t help but smile and cringe at the same time when I read this entry.
I’ve never met anyone outside of my family with PKD. I live in South Africa. PKD is quite uncommon here.
So thank you for sharing your story. It has been such a comfort and inspiration to me.
Much love, Coleen
I must apologize, I confused you with another PKD warrior when I referred to the before and after pictures. I’m sorry about that.
Dear Coleen,
It means a lot knowing that you have been following my journey and I’m so glad that you reached out. Thank you for sharing a little about yourself and for your sweet sentiments. It is fun to know that you live in South Africa and that my blog connected the two of us, however I wish we lived closer as it would be great to connect in person. Wonderful that your kidney function is still good. I’m not sure what picture you are referring to (I know you followed up saying it wasn’t me) but if it was kidney related, I wanted to share that my kidneys were gigantic before they removed them. My doctor said that I looked “11 months pregnant.” Yikes!
I can sympathize that it is not easy being our age and enduring so much! I hope you have a strong support system. I just “friended” you on Facebook. 🙂
I’m glad that you found my blog and now have the opportunity to connect with other PKD patients.
Wishing you and your family the best! Thank you very much for introducing yourself. Please know you are not alone and I’m happy to help you however I can. Feel free to email me or reach out on Facebook. PKD Will Not Beat US! xo
Hi there,
It means so much that you took the time to write such an awesome reply. I really appreciate it. Thank you!
I will definitely stay in touch. You are such an inspiration to me. It helps so much to see what you have been through and accomplished with PKD and how you still keep fighting every day.
#pkdwillnotbeatus
❤
Hi Coleen,
You’re so welcome!!!
Thank you very much for your thoughtful words. They mean a lot and help fuel my passion to keep sharing my story and to continue writing.
I look forward to staying in touch. Hope you’re having a beautiful weekend.