I’m a go-getter. I like to soak in and accomplish as much as I can each day. My body does not always allow me to do what my mind wants or thinks it can do. When living with chronic health issues like PKD, fatigue can become a part of our lives. When both of my kidneys were removed, I was on daily dialysis and hospitalized for many months; brushing my teeth was a huge accomplishment for the day.
Fatigue is frustrating. It can make us feel inadequate because we can’t do what we used to be able to do. When we can’t meet goals that we set for ourselves it can be discouraging. As we enter into different phases of our lives and our health, we must learn to accept and adjust. I know this is not easy.
After growing up enduring symptoms of PKD, going through dialysis and a bilateral nephrectomy, my kidney transplant gave me my youthful spirit and my energy back. I worked full-time for 10 years after my transplant and had many hobbies that filled my free time. I rarely sat still and did not deal with fatigue.
Be that as it may, fatigue made its way back into my life with my adult onset of epilepsy, disk herniation and recovering from back surgeries. My fast-paced, fun lifestyle changed, which to this day is not easy to deal with. It is a day-to-day balance of judging how I feel and what I think my body can handle. On days I feel well, I want to do as much as I can. Sometimes I push myself too hard knowing that I will probably pay for it with increased pain and fatigue. However it is nice to feel ‘normal’ even if only for a short while. I yearn for the days, like before my disk herniation, where I could do as much as I wanted and needed without negative health ramifications.
It is hard to accept a slower paced lifestyle and daily fatigue. However, the more we listen to our body, the better we will feel and the more we will enjoy each day. It is all about perspective and mind/body balance. We are in control of our bodies and our minds. I’m thankful my mind wants to push my body and believes in its potential, but we must listen to our body’s response and adjust our decisions accordingly. As we live through the different phases of PKD, our range of daily accomplishments may change. If the only thing we accomplish in a day is brushing our teeth, enduring our dialysis session or maybe overdoing an activity, that is ok. If we need to rest, rest. Our mind and body deserve a break and recognition for all we endure. We are fighting hard every day and should be proud of ourselves.
Valen,
You said that so well. I can relate to the fatigue and especially listening to out bodies. Sometimes as you said, the mind has one idea and the body doesn’t always agree.
I believe that we truly have to sometimes push ourselves or we’d just sit around, sometimes feeling sorry for ourselves. But that’s not me either. I feel so lucky…even if I have PKD. I know what I have to deal with and can handle that. Think of all the people that do not know their fate in health. PKD weill Not beat me either!!
Great job as usual.
Have a great day.
Cathy
Hi Cathy!
Thank you very much! We definitely have the same positive thought process and approach when dealing with fatigue and PKD. Thank you for sharing and for your support. xo
Big hugs!
Val,
I am 64 and have known about my PKD since 40. I’ve done very well so far comparing to my family history. Mother, sister, and brother all had transplantation before 50.
Other than my PKD I’m relatively very healthy. and being retired military with a long career of 30 plus years I’ve always been a very active man.
But as of late, say the last 6 months, I suffer severe fatigue. Though I sleep no less than 8 hours each night, and some nights more, by noon the following day I’m exhausted. Thus is very frustrating for me as I’m always on the go.
So thanks for the grace of just being able to say; “sorry I just can’t today”. Because being raised in a Danish family of proud Viking like men I’ve had a hard time even showing any sort of weakness especially in physical abilities. And I’ve raised my two boys in this same mold. One is PKD free. The other inherited my defective gene and also has PKD.
Now I’m able to show it’s ok rest if even in the middle of the day should my body run out of gas.
It’s just the way it is and I’m learning to just be grateful that at 64 I’ve not had to go on dialysis yet.
Maybe I’ll be one of the lucky few that can ride this through never fully going into total renal failure.
Thanks for your encouraging post!
Hi Stephen,
I’m so glad you found this post and that it provided encouragement for you. Shifting my thoughts to gratitude has been a wonderful way of coping for me and that is exactly what you are doing. Shifting your struggle with fatigue to gratitude by focusing on the amazing fact that you are 64 and have not had to go on dialysis yet.
I hope you are one of the lucky few that don’t go into renal failure. My mom is 64 and has not endured renal failure yet either, so amazing! And then I had both kidneys removed at 18, was on dialysis and received a kidney transplant when I was 19-years-old (18 years ago). Wild how we are all different. I am sorry that your one son has PKD, but wonderful to know that the other son does not. It is hard to face fatigue and not try and power through it. It is hard to feel like we are surrendering to it and giving in, but we have to understand that listening to our body is so vital and hopefully if you listen to your body and give it the rest that it needs, then you will live a long life with your two original kidneys and never need dialysis. Thank you very much for sharing your story. I trust that your strong Viking spirit will get you through whatever the future may hold. Wishing you all the very best!!
I’m stage 4 pkd and feel totally exhausted every afternoon no matter how well I eat or what I do to combat it. I’m trying to be positive and convince myself I’m not getting worse but somehow this afternoon tiredness gets the better of me everyday. Is it truly something I need to just accept.
Just had a thought. If abreva cures the cold sore, I wonder if the ingredients can cure cysts on kidneys. Any biochemist out there ? Kidneys Doctors?
Cold sores are caused by the Herpes virus. Our lovely cysts are not from a virus. If only genetic ‘mistakes’ were a virus.
Genetic innumerable cysts and cold sores are worlds apart. One day we will find a cure!
You know I read this and im convinced you were talking to me 🙂 . Sigh. . I was super woman. .or felt like I was. Yes..I’ve been whining lately about being half of what I felt I was a year ago but I know this is normal heading to stage 5. My standards for energy are a bit over the top. I know I’m not alone and certainly not the worst. I do always think of you. I remind myself of your journey and I know one day you’ll hear me saying “Omg..I feel so good again”!!
Hi Adriana,
You’re so sweet! I was talking to you 🙂 and all of our PKD friends enduring the same journey as us. 🙂 I was super woman too, and I try my best each day to get stronger in hopes to feel that same level of energy again. I know this is really hard for you. It is not easy. I trust in your strength and perseverance. You will fight through this not so fun chapter to be rewarded with the “Omg…I feel so good again” chapter! I look forward to hearing that! Hang in there my friend! xo
I don’t know you all but I’m very proud of you!! I do not have PKD but my Dad and closest brother do so as I try to “give them” my energy I do the same to you!!!
Rick “mountainbikeagainstPKD” Nelson
Hi Rick,
Very sweet, thank you! We appreciate all the energy we can get. 🙂 Your dad and brother are lucky to have such great support from you.
Where do you ride mountain bikes? Curious as my husband and I live in the foothills of the Sierra Mountains in CA!
Thank you for the wonderful note.
Love,
Liza
You are so welcome dear Liza! xo Hugs!
Valen, thanks for sharing your story. I can relate with you, I too have Pdk. I admire your strength. Some days I need to have more of it. The picture of you reminds my of my hometown. It looks like you are on old Hwy 40, overlooking Donner Lake. What a beautiful place.
Hi Stacy,
Thank you very much! That is exactly where I was! 🙂 Your hometown is a magical place. I love Donner Lake and Truckee. Take care.
Dear Friends,
I am 58y/o I learned 5 years ago I have PCKD now stage 3a….to make things worse I take Lithium for Bipolar disorder, I have been stable since 1988 on Li+. I have 2 kids, 18 and 12, a wonderful husband and 2 little dogs, Gus and Ralphie. I may have to switch my Li+ to a less damaging drug. I am frightened to death. I am a RN and I will refuse dialysis. No way! Does anyone have a similar story?
Hi Evelyn,
I don’t have a similar story in regards to bipolar, but I wanted to thank you for reading my blog and for sharing.
It is great to hear that you have such a wonderful circle of support in your family.
I had both kidneys removed at 18 years old and was on dialysis for 8 months until I received my kidney from a living donor. I know you said you won’t do dialysis, but I feel fortunate for dialysis as it was my lifeline until I could find a donor. I hope you are able to find a kidney when needed and have a seamless transition without dialysis, which is the ideal scenario.
Wishing you the best if you wind up having to switch meds. Take care!
-Valen
Thank you all for letting me know that I am not the only one dealing with this fatigue. Today is another day off from my full-time job as a computer programmer so I could spend half the day catching up on sleep. I was diagnosed 12 years ago, but in only 3 years time, I have lost much of my former superhuman strength and most days I don’t have the energy to go for a walk when I used to hike all over the place.
I am in stage 3b, aged 57. I take a nap in my car at lunch almost every day. Ten more years to go to retirement. I wonder sometimes if I’m going to make it.
I also have a very high sensitivity to the side effects of hypertension drugs. Edema and hives are my most frequent issues. Some drugs just don’t bring my blood pressure down.
For those who are afraid of dialysis — my mother also had friends who had a difficult time with it. They were tired or didn’t feel well. She was hesitant to start but she finally did at the same time she had quadruple bypass surgery two years ago. Well, she has come back to life! She is doing very well and most days she drives herself to and from dialysis, taking back roads only to get there. She is 89 years old and feels better than before dialysis. I’m sure the additional blood flow helps too but she isn’t nauseous and only a little tired after a session.
Thank you for allowing me to share my issues. People in my family don’t talk about symptoms unless I ask specific questions. I don’t always feel like using interrogation methods just to get some information. So I also thank you so much for sharing your stories. It means a lot to me.
Dear Vicki,
Thank you very much for taking the time to share what you are enduring, the reality of this disease and your raw emotions. It is not easy and I’m so sorry to hear you say that you have lost much of your superhuman strength. I can totally sympathize with you as I now wait for a liver transplant and I’m oh-so hoping it will restore my energy as well.
Wow! So amazing that your mom is 89, driving herself and doing well on dialysis. I appreciate you sharing this, as it will give hope to many.
Thank you for taking the time and energy to share your path and your family’s path with PKD. I hope you will continue to share your wisdom and first hand experiences on my blogs for others to learn from and be inspired by. Wishing you and your family all the best!
Six years later – Mom passed away in 2020. The stress of losing so many friends to Covid took its toll on her heart. A reminder that while being treated or monitored for PKD we should also be monitored ny a cardiologist. Many kidney patients also have heart problems.
A year later, I contracted one of the worst cases of Covid. I was intubated on a respirator, had a feeding tube, almost didn’t make it and was hospitalized for about 2 months. I have some residual issues from Covid, but I made a good recovery.
In Spring 2022, my doctor added a mild diuretic to my blood pressure cocktail. My BP was going up very high and I was retaining fluid. I felt very tired but so much better once my BP was back under control.
I’m still working. Four more years to go.
i am recently diagnosed with PKD . So far all symptoms are normal but sometimes I am quite active , a person who like to jos, exercise , heat healthy but sometime i feel more fatigue then normal. Is this normal ?. Does it impact your love life also ?
Hi. It’s such a relief to know I’m not alone. I was diagnosed at 26. I had always been active. I loved kayaking, hiking, and working outdoors. I’m 30 now and am always so exhausted. After I had my daughter, I never regained my energy. They said it was because I was a new mother, but I had a difficult pregnancy due to high blood pressure issues because of PKD and delivery almost killed me, so ever since then I’ve become so exhausted. A simple workout will have me down for 2 days. I’m married with a 2 year old and a homemaker (had to stop working because of my pregnancy complications) and struggling to keep up with what would have been a walk in the park 5 years ago. I’m only stage 1 pkd but my bp has been out of control since the pregnancy so on max medication and I get chronic stones due to PKD.
Hi Angie,
You are definitely not alone and I am so sorry that you have to endure chronic fatigue. It is hard to be exhausted and have to push yourself through daily chores and being a wife and a mother. It is important for us to speak up and advocate for ourselves and to listen to our bodies. I feel for you and hope you’re able to find time to rest and take care of yourself. Sending love.
Hi Valen, I follow you on social you are my warrior hero. I have been struggling with chronic fatigue, my life is now a series of countless days in bed because moving around drains me. for years i have been tested for everything under the sun! I asked my nephrologist if fatigue is connected to pkd and she said no, so to be reading that so many people deal with this is blowing my mind!
I not able to enjoy my life, I used to sing, model, working out was a big part of my life, I’m an island girl so beach was a big part of my life i also love traveling but now i can’t even go grocery shopping when i want even taking the trash out sucks, so whenever i feel good i make it a point to go out and do something. Someone mentioned that brushing their teeth was good, I can relate, taking a shower for me takes a lot out from me and I am also going through menopause, i will be 56 years old this November God willing.
I am just really tired of being tired that is why i came here.
@paigepaigelife
Hi Paige,
I can so relate to being tired of being tired. It makes me so sad that you are enduring this. Prior to my recent transplant, I barely had the energy to shower and when Noah would ask me a question, I felt it took all I had to respond to him and that scared me. You are not alone with having fatigue and it is real. What is your GFR? Are you getting close to needing a transplant? I’m glad to hear that when you do feel good that you make the most of that precious time. Thank you so much for your incredibly kind sentiments. I really appreciate you following my journey and I’m honored to be your hero. Sending strength and love.💜
My name is kempf im in stage 5 kidney failure im having trouble handling this the pain the weakness i feel sick all the time i feel like im in the way of wife an daughter i keep thinking of death i think about suicide often i keep praying for a kidney i just feel like giving up i still hear my mothers crys from her pkd
Oh my, I’m so sorry you are struggling so much! There are so many hard facets to this disease, with enduring it personally, seeing what our family goes through while caring for us and seeing how it affects other family members who have the disease. You are not alone!! Hang tough because post-transplant life is worth fighting for. I spent almost a year in the hospital when I was 18 and finally got a kidney transplant and now I’m 37 and 18 years post-kidney and 2 years post-liver transplant. Do you trust your care team and are you on the transplant waitlist? I hope so and I hope you get the call ASAP or are able to find a living donor. I’m cheering for you and wishing you all the very best!!!
Fatigue is kicking my butt lately. It’s so frustrating that I’m forced to slow down. I am fortunate to be able to be a “stay-at-home dog mom now” and I hope to take short trips to see family and friends soon, though. I’m glad you and Noah get to travel in an RV! It is more covid-friendly and fun. 🥰
Hi Amy,
I am so sorry that you are dealing with fatigue on top of everything else going on in the world. It is so hard to mentally have the energy to take on the world and then your body isn’t up for it. I hope you can safely see family and friends soon. We are really missing our friends and family. I am definitely grateful for our new RV outlet. Sending big love and hope you enjoy your weekend. xo
My spouse of many years had PKD and Nov 2018 he received a kidney transplant from deceased donor. First 14 months so many serious problems such as organ rejection, low red blood counts then CMV, and low white blood counts. I was injecting him with expensive meds for blood chemistry problems. He’s also on 2 different insulin meds 4x a day. Jan 2019 he had first blood labs that were good. From then to now March 2021 still good. He feels worse now and all months prior than before transplant. Fatigue is evident everyday still now.He does not walk even short distance with me and his tremors of entire body even as he sleeps is always there. He never had dialysis before. We feel disappointment in the outcome of the Transplant. He cannot do any hobbies and he’s had many. I am grateful he’s not on dialysis, but we feel like our lives are on hold to travel globally.He sits and watches tv all day,but he’s a great cook. That is his one thing he can do. I’ve researched this topic heavy.Glad to read your comments. I wish you all well.
Dear Lea,
Wonderful that your husband received a kidney transplant, but I am very sorry to hear of the journey you have both endured since. The first year seems to be the hardest with medicine adjustments and health hiccups. However, that usually evens out and then the recipient does really well. I am almost 19 years post-kidney and 3 years post-liver transplant. Have you discussed with your transplant team if his medicine can be altered since he seems to be so symptomatic? I would highly recommend you share the negative impact this is having on your husbands life and see if you and your healthcare team can come up with a good treatment plan to get him to be able to be active and enjoy his gift of life and get back to cooking versus watching TV all day. Wishing you both all the very best!!
Dear Val,
Thank you for sharing your story! I found out about my PKD at 28. My dad had PKD and has been on dialysis since I was a child. Seeing what he has endured and how he still smiles through it all has kept me energized. I am such a go-getter myself. I work so hard that I forget to take time to relax. Now that I am 30 going on 31 in the next month, I am starting to feel the decline in my energy some days. Both of my kidneys are still functioning which I am grateful for, but there are days where I feel so drained. Your story is very inspiring and uplifting.
Thank you for sharing and taking time to keep others encouraged!
Dear Erica,
Thank you so much for your kind sentiments. It is an honor to share my journey and first-hand experiences to hopefully empower and encourage others. I am sorry that your father has had to be on dialysis for so long. He sounds incredible and what an amazing role model to have. I hope he is able to get a transplant. I am a go-getter as well, but it is important for us to listen to our bodies and give ourselves the rest and care we need. I know easier said than done some days. I hope your kidney function remains stable for many many years and you continue to live life to the fullest. Wishing you all the very best!!
I am thankful for everyone sharing their experiences with PKD and fatigue. While the positive thoughts and encouragement are great to hear, I’m not seeing any advice for decreasing fatigue and improving energy levels.
I am 70 years old in Stage 4 CKD with PKD and the fatigue and “mental fog” are getting the better of me. I understand listening to my body and celebrating what I can do, but isn’t there anything to improve energy and focus?
I am so glad i found this page, i have been struggling with fatigue, i push myself thru my work week, i am self employed and have always been the energizer bunny. Ive always been very active. Im in stage 4. Its been very tough. Im exhausted all the time. I look at pictures of me just 3 years ago i was so young and beautiful full of life and now i look so drawn, old and very tired, and i look 7 months pregnant… it awful. I am struggling with this so much. In my good days i try to be my old self. But boy do i pay for it the next day. On top of this i need a hip replacement. I try to be strong but its so hard. I just keep pushing. My mom was on dialysis at 54 and died from an aneurysm and a stroke at 56. My brother had a transplant at 46. Im almost 52. I just want to be my old self again i hate this stage. I told my dr. I dont have time for this. Lol. Im scared of whats coming down the road with the next stage. Thank you for listening. Thank you all for sharing i dont feel so alone in feeling all this fatigue. ❤️