As our friend and colleague Nicole Harr prepares for her upcoming kidney transplant, we arranged a Q&A between her and longtime blog contributor Valen Keefer to help her and others learn more about transplant preparation and life post-transplant:
MRI of Valen’s kidneys pre-nephrectomy
Nicole Harr: How did you prepare for your transplant surgery?
Valen Keefer: The months leading up to my transplant were different than most. I was too sick and my kidney function was not at the appropriate percentage for me to go on a transplant waiting list. I had a bilateral nephrectomy at 18 because my kidneys were gigantic and my cysts would not stop bleeding. If the kidneys weren’t removed, it would have been a fatal outcome.
My transplant was my last hope for survival. My preparation prior to surgery was to stay as healthy and strong as possible as I endured dialysis several times a week — sometimes every day. I stayed open-minded, positive and hoped that the surgery would restore my health and give me a second chance. Thankfully, it did.
Valen’s prepared medicine regimen
NH: What was the biggest lifestyle change for you after your transplant?
VK: Some of the biggest lifestyle changes have been adopting a lifelong medicine regimen, becoming a full-time patient with doctor appointments and monthly blood work and appreciating the importance of becoming a knowledgeable patient and advocate. I also have to be very aware of germs and protecting myself from getting sick because a suppressed immune system responds differently than a healthy one. A common cold or flu can be very bad for a transplant recipient. I have to act quickly when medical symptoms arise.
Receiving a kidney is a priceless gift that comes with great responsibility. We are responsible for getting the most out of our transplant. It is up to us to take care of ourselves, especially our kidney, and learn as much as we can along the way. The changes are worth it. Life is precious and well worth living to the fullest.
Valen taking precautions while travelling
NH: What has been your biggest challenge after your transplant?
VK: Getting others to understand and appreciate the significance of my health issues and seriousness of having a suppressed immune system. I’m not tethered to a dialysis machine anymore and on the outside, I look healthy. When others see that and know I received a transplant, they think everything is better. Yes, life is better, but a transplant is not a cure. If I were to get sick, it could have grave consequences for my kidney and overall wellbeing. If I have a fever or start vomiting, I have to go to the hospital right away for fear of infection and not being able to keep my vital meds down. I am almost 15 years post-transplant and take my role as a transplant recipient very seriously. I will do all that I can for the vitality of my kidney.
As transplant recipients, we have to take different precautions than some. Before going to gatherings, I’ve learned to ask if anyone there is sick. This allows me to decide whether or not it is wise for me to attend. When others don’t walk in our shoes, they don’t understand what our lives are really like and we can’t fault them for that. So, in the end, our health is in our hands. It is our job to educate others, as well as ourselves, and make the best decisions to live the happiest and healthiest lives we can.
Valen and her kidney donor, Sally (left)
NH: What’s one thing you know now that you would have liked to know before you had your transplant?
VK: How beautiful life would be. At 19, I needed a kidney to survive. Dialysis was very challenging for my body and it kept getting tougher as the months progressed. I didn’t know what to expect post-transplant. I approached things one day at a time as I waited to receive the gift of life. I wish I could have met someone who’d already had a kidney transplant and had a better understanding of the miracle of transplantation. Talking to someone who had been in my shoes would have provided invaluable hope. This is one of the reasons why I am passionate about sharing my story, with the goal of providing hope and education to others that I wish I’d had in my time of need.
Nicole was referred for transplant evaluation in December 2015. After being evaluated in February 2016, she was put on the transplant waitlist. As soon as she was listed, several people contacted the transplant center to be evaluated as her donor. It took 8 months for Nicole’s living donor, Sue Full, to get through her evaluation and be approved. Read more about her journey here.
Hey look it’s the 1000th article about Valen. It’s almost like nobody else has ever had PKD.
Hi John,
Valen is the regular contributor to PKD Will Not Beat Me, which is part of PKD Connection. As we continue to make posts on the blog, we look to add more patient perspective, and we do appreciate reader feedback.
Many thanks,
The PKD Foundation Team
John, we understand the fact that you, too, must be struggling greatly with this terrible disease. We get it.
Connecting with others who are walking on this pathway we share, but never chose for ourselves, is important or we wouldn’t be on this site. Maybe you can submit something. People here seem pretty welcoming. Good luck. See you on the pathway.
Hi Natalee,
Thank you for sharing your supportive sentiments. I very much appreciate you reading my blog and loved reading you say about connecting with others because the goal of my blogs is to connect the PKD community, educate and inspire. Wishing you the best!
Shame on you John, others are reading for the first time. My question for Nicole is what to my 2 older sons need to know to be a donor for their younger PKD brother who is now 30? His kidneys are still functioning ok, we were told he might make it to 50 before a transplant is needed. As hus Mom, I wont live to see him reach 50. How can I prepare them now?
Hi Julie,
Thank you for sharing your sentiments and asking Nicole a question. I appreciate your support and reading my blog. It is great that you are being proactive to help your children. Wishing you and your family all the best!
Thank you all for sharing with us. I started getting dialysis 2 month ago and its hard. I feel tired emotionally and physically. One of my friend and my sister got tested both positive for donation. I will be getting a kidney from my sister in 28 days. Im so happy and i hope everybody can get the gift of getting a transplant soon.
John, do you have PKD? Are you telling your story? I’m grateful that Valen stepped up to share. I have a 9-year old with PKD and she loves and learns from reasons Valens stories, but not because Valen is anything special…she’d love and learn from anyone on this journey who’s willing to step up and share and teach. Are you?
Hi Stephanie,
It is wonderful to hear from you! I hope you and dear Bella are doing great! I think of you two often. Thank you for sharing your sweet sentiments. It means a lot knowing that you two read my posts. If there are any topics Bella or you would like me to write about, please let me know. Please give Bella a hug from me. 🙂
Thank you for the great explanation on your biggest post-transplant challenge. Now approaching the tenth anniversary of my kidney transplant, I have often been faced with the exact same thing. It is definitely up to us to take control of our health and avoid situations that might compromise our well-being.
Hi Carol,
You’re so welcome! Congratulations on approaching your 10-year milestone of receiving your gift of life! Wonderful to hear that you can relate and share the same positive approach of taking the best care of your second chance. By doing this, I see it as a way of honoring and respecting the precious gift we received. Wishing you the best! Enjoy celebrating 10 years. Yay!!!!! 🙂
Thanks for sharing your stories.
Thank you, Vik! I greatly appreciate your support. It is an honor to share my journey! Wishing you the best!
Thank you for sharing. It has been 4 years now since I had my kidney transplant.
But it is true that when I was told about transplantation, I was not given too much choice.
It was either the transplant or I was continuing but peritoneal dialysis treatment. But I was told that if I continued on dialysis my life expectancy would be lower.
It really scared me and that’s why I chose transplantation. So far everything is going well, I feel better and I was able to start new projects. I even opened a small online medical alert jewelry store called Sofiancy https://www.sofiancy.com thank you again for sharing your story and I hope you are doing well.
What precautions do you take when you travel?
Hi Ella,
Thank you for reading my blog and for the question. I’ve previously written two blogs on precautions that I take when I travel. Ironically, I’m on a plane now wearing a mask (one precaution I take.) 🙂 Below are the links to the two posts. I hope you find them informative and inspiring. Please let me know if you have any additional questions. Take care!
http://pkdfoundation.staging.wpengine.com/pkd-will-not-beat-me/have-meds-will-travel
http://pkdfoundation.staging.wpengine.com/pkd-will-not-beat-me/whats-in-your-suitcase
Thank you for sharing your story, Valen. My transplant is now 22 years old and everything you said is true. People think we are in perfect health once we get a transplant, but that simply isn’t true. As my nurse told me, “You’re simply exchanging one set of problems for a new set.” Correctly taking your meds everyday is essential and it amazed me when my doctor said that is the number one reason why people reject a kidney transplant. Don’t get a transplant and think you can skip a dose here or there. You’ve been given a precious gift. Use it wisely and take good care of it. It will not last forever.
Hi Elaine,
You’re very welcome! 22 years! Wow! Congratulations and thank you for giving me hope. I’m approaching 15 and so very grateful. I appreciate you reading my blog and for sharing your words of wisdom. I too am in awe when I hear of patients who don’t take their meds. Post-transplant life is way better than dialysis and taking meds just becomes routine like anything else in our day-to-day lives. Thank you for sharing this extremely important advice. Wishing you many more years with your precious gift.
I am amazed at this transplant experience. Mine is very different. I take two anti rejection meds, one twice a day, the other 3 times. I take a yeast inhibitor 3 times a week. That’s all. I take supplements. I also have polycystic liver disease. I am ten years post transplant. I travel. I just returned from babysitting my 2 and 4 year old granddaughter for 5 days. I eat a whole food plant based diet and have done that for 30 years. I see my doc every 3 or 4 months. That’s it. So why all the talk about full time patient, etc?
To continue a bit, I also had a double nephrectomy and got a kidney from my brother 7 weeks later. The first six months were daunting.
But I don’t live my life thinking about my transplant! I eat very low protein. I have only had a cold once or twice but I don’t work outside the home. I am ‘aware’ of germs, don’t hug people unless I know they aren’t sick. I have pain from my liver cysts. I also have Ehlers-Danlos Syndrome, a genetic connective tissue disorder with too loose ligaments resulting in dislocating bones. My kidney is the least of my worries really.
Hi Diane,
Thank you for sharing your journey. I’m glad you’re doing so well. When it comes to PKD and medical issues, we all respond differently. I was diagnosed at 10, spent a year in the hospital when I was 18 where both kidneys were removed, I was on dialysis and thankfully received a transplant. I received my transplant almost 15 years ago. I’m now 34. Fortunately, my kidney is the least of my worries too, but I respect it greatly and take the best care of myself. I have epilepsy, severe back issues with Harrington rods from T3 to L4, discectomy, pelvic floor issues and chronic pain. I’m on two anti rejection drugs, but take around 20 pills a day – some are multiple pills of the same medicine. I juggle a lot of health issues, which makes my world feel like a full time patient at times. Our stories are all unique and it’s important for all of us to share so we can learn and receive support from each other. Congratulations on being 10 years post-transplant. Wishing you many more healthy years of living life to the fullest!
I am on my second transplant,thank the Lord. The first transplant was a cadaver I also have had another a year ago. Everyone is different. A live donor is a lot better it last longer but a cadaver life span is usually 10 yrs which is when I lost my first kidney. My first one I took my meds but got sick a lot. So this time I’m more careful of who I’m around. I also baby sat 5 Grandkids at once helped my daughter a lot. I did learn that you have to put your health first. This time around I’m cautious and listen to my body. I had PKD also and my native kidneys are removed because they were so large. All I can say is your fortunate that it’s been easy for you but everyone is different. God Bless you
Hi Debra,
Thank you for sharing your story and expressing the importance of all of us understanding that everyone is different. We can’t compare our PKD journeys to one another and think they will be the same. Congratulations on receiving two transplants and thank you for sharing what you learned from your first transplant to the second. I wholeheartedly agree, we must put our health first. Wishing you all the best!
Thanks to both of you guys for sharing your stories in order to help so many others!
Hi Amy!
Thank you for your support and reading my blog! It is a pleasure and honor to share my story! Take care.
Thank you for sharing your journey. The Pkd journey is different for everyone. My husband is on dialysis and transplant is not in his medical plan at the moment but everyone always asks “why doesn’t he JUST get a transplant?” Yes, dialysis isn’t a picnic but neither is the transplant process. Let’s just find a cure and treatment so no one has to live with PKD and the challenges patients and their families face every day. I pray my children and grandchild do not face the journey my husband has gone through!!
Thank you Valen, Nicole and anyone else for sharing your journey to help others know they are not alone. PKD patients and families too often suffer in silence and isolation but we all need to tell our story so people understand and learn about PKD so they can support the research and foundation. Knowledge is power but sharing that knowledge with those closest to us is priceless!
Hi Monica,
You’re so welcome! I can’t thank you enough for your beautiful sentiments. I completely agree with everything you said and I write this blog and share my journey for the reasons you shared. Thanks so much for expressing all of this for others to learn from and be inspired by. Also, thank you for sharing your personal story. Our lives and what is good for our bodies are so different. I hope that whatever medical plan unfolds for your husband, is the best for his body and your family. Support is vital for PKD patients and it sounds like your husband has incredible support from you! Wishing your husband, you and your family all the best! Take care!
I am new. 48 years old and just found out I have PKD. I See a nephrologist next week in St Louis. I am confused on what type of PKD I have.. my mother passed at the age of 69.. she had many health issues.. high blood preasure was one main fact. But she died of renal failure. But no one ever said she had PKD.. so was it missed ? I guess… I am not sure. I was born with only one Kidney. I have always had kidney infections off and on through out my life .. but just this month.. after a ct scan and MRI cyst were found in my kidney. Right now my kidney function is alright. Blood in urine.. cloudy. Lots of pain in the flank area. I have many questions. Where can I ask .. the symptoms etc.. feeling very anxious before my next trip to doctor.
Hi Susan,
To learn more about living with PKD and find resources to take with you to your nephrologist appointment, visit our page at pkdfoundation.staging.wpengine.com/living-with-pkd/. If you have further questions, please send your contact information to us at pkdcure@pkdcure.org and we’ll put you in touch with our Director of Patient & Volunteer Engagement.
Hello, I had this pkd four years ago and I check my kidney function yearly, which all seem alright.
I have so much pains most of the time with lightheadedness, hypertension and general weakness. I know they are all symptoms of the disease, my elder system have the same pkd and have suffered stroke because of her hypertension.
I am doing all I can to stay healthy and live a normal life, currently the only medication I am on are two blood pressure meds.
I try to eat well and healthy as well, I am in Africa and dialysis or kidney transplant isn’t that easy, so I know cannot afford that should my kidneys fail, that is why I want to do all I can with the help of God to stay healthy and live to over 50 years. I am 33 years now with three kids,
Please help Mr with any advise, regarding diet, exercising, meds, stress and work. Thank you so much
Hi this is Melissa.
My transplant date was
6-23-21. I have a story and a question. My kidney still isn’t working. I’ve had a lot of complications. The kidney came from a live donor. A lot of anti rejection pills made me sick or they thought just weren’t working so they’re trying a different approach. I’m currently taking azaprozine 100mg and then once a month by IV, I recieve Bellecept. This was started 4 months ago, and ever since then, I have had hope major bone pain everywhere, BAD insomnia, constipation, numbness and rapid weight gain. obviously. Obviously has to be coming from this because their saying it could be from something else. Aren’t these some the side effects of Bellept? It’s been rough, I’ve been thru so much 2 biopsies, multiple ultrasounds, angiograms, I also had a urine leak, so they had to go in the day after my transplant and fix that. Hospitalized with diarrhea and dehydration, that was from the med myo acid something. Still trying trying to keep hope and keeping a smile on my face, The bone pain and weight is the worst part, always a person who works out and I can’t even do that because of the pain. Always trying to look for some answers, just wanna feel better, 16 months later after transplan, creatinine is still 1.8 and GFR 37%, born with Alport Syndrome, been sick 7 years, my sister transplant 10 years and still doing great, she has an awesome kidney. Thank you for thinking to my story, I am so sorry this is so long!
Hi this is Melissa.
My transplant date was
6-23-21. I have a story and a question. My kidney still isn’t working. I’ve had a lot of complications. The kidney came from a live donor. A lot of anti rejection pills made me sick or they thought just weren’t working so they’re trying a different approach. I’m currently taking azaprozine 100mg and then once a month by IV, I recieve Bellecept. This was started 4 months ago, and ever since then, I have had hope major bone pain everywhere, BAD insomnia, constipation, numbness and rapid weight gain. obviously. Obviously has to be coming from this because their saying it could be from something else. Aren’t these some the side effects of Bellept? It’s been rough, I’ve been thru so much 2 biopsies, multiple ultrasounds, angiograms, I also had a urine leak, so they had to go in the day after my transplant and fix that. Hospitalized with diarrhea and dehydration, that was from the med myo acid something. Still trying trying to keep hope and keeping a smile on my face, The bone pain and weight is the worst part, always a person who works out and I can’t even do that because of the pain. Always trying to look for some answers, just wanna feel better, 16 months later after transplan, creatinine is still 1.8 and GFR 37%, born with Alport Syndrome, been sick 7 years, my sister transplant 10 years and still doing great, she has an awesome kidney. Thank you for thinking to my story, I am so sorry this is so long! I’m so sorry to add one more thing. Bloating is so bad, can’t get that to go away no matter what I do!
This post beautifully captures the profound impact that a kidney transplant can have on an individual’s life. It’s a testament to the resilience of the human spirit and the importance of organ donation. Let’s continue to raise awareness and eliminate myths surrounding transplantation.”