Managing PKD and Fatigue

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Published on February 22, 2022 | In living with PKD, a healthy diet and regular exercise are important aspects in managing PKD. But there’s one factor that can make daily life challenging—fatigue. That overwhelming feeling of exhaustion can be frustrating and affects everyone differently. Today, Lara Macklin is sharing how she manages PKD and fatigue.

 

Can you tell us a little bit about your PKD journey?

Lara: Short version—I was diagnosed in my 20s and it started to affect me more in my 40s. I’ve always dealt with blood pressure issues, but nothing too much more than that until I was in my 40s. Although, the anxiety and stress of not knowing what was next were almost worse. Then I developed a large cyst on my liver that caused a lot of discomfort and eating issues with reflux and slight nausea. Between the size of my kidneys and the liver cysts it was frustrating, anxiety and stress built up. Yet, my kidney function remained good enough.  I had the large cyst drained and that helped but it filled back up over about a year’s time. This past August, my GFR dropped to 19 and I could start the transplant process. I am now waiting while 3 people are going through the Living Donor Process to see if they are a match.

 

What does your fatigue look like?

Lara: Mostly just tired, no energy. I have about 3-4 good hours in me a day before I feel it setting in and it depends on what I’m doing. I want to lay down and be horizontal or stand up. Sitting is hard. Even eating a small meal makes it hard to sit, so I need to walk or lay down. Walking can be exhausting at the end of the day, so I end up laying down. I am constantly fighting the right thing to do and what I feel like doing. I’m still working full time, mostly remote, but when I do go in I am on my feet all day and just collapse when I get home. When I work from home, I often try and take a break in the middle of the day for a walk and a rest, sometimes a nap.

 

How does it affect you?

Lara: It changes the way I want to live my life and be active with my family and pup. My days are now scheduled around how I feel and not what I want to do.

 

When did you start noticing the fatigue?

Lara: I had a non-related PKD issue and became severely anemic. That was when it really hit me. But I would say when my GFR was in the low 20s and during all the anemia issues I started noticing it. It took almost three months to get my red blood cell count back up to normal.

 

How do you manage your fatigue?

Lara: I plan my days so that I can rest and selectively choose my activities. Plenty of sleep too.

 

Anything else you’d like to share?

Lara: This is just part of the disease and accepting that may help, instead of trying to be sad or depressed about it. It also helps when family and friends understand how real fatigue can be. It took me a long time to stop feeling sorry for myself and learn to live with my new “normal”. My friends who have received transplants say I will be amazed at how much energy I will have after the transplant. Can’t wait! But that comes with the price of having a compromised immune system for the rest of my life…

 


For resources on living with PKD, check out PKD Connect. Here you’ll find education and tools to help you at any stage of your PKD journey. PKD Life is also a great spot for useful tips on managing PKD. Take a look at these articles on sleep strategies and weighted blankets to help you feel nice and rested.

3 Comments

  1. Dwight Odland

    Lara, thank you so much for sharing your story with us. I know exactly what you’re going through. It is frustrating being so limited, and having a small “window” of time in a day where you really feel good and can accomplish things. I hope one of your potential donors is approved!!!

    Reply
  2. Liz Lipski

    Lara,
    I hope that one of your donors is a good match for you and that the transplant happens soon. It sounds like you are really suffering. I screened my son’s potential donors for blood type before giving them to our transplant center because they were slow and would only consider two people at a time. That helped us to weed them out a bit.

    The fatigue of the anemia of chronic kidney disease is real. Towards the end, when my GFR had fallen like yours, I was able to use injectable epoetin. It made a huge difference. You’ll need to ask your doctor about whether that’s an option for you.

    My son and I both have transplants. You will feel so much better on the other side. I’m 16 years out, he’s 3. You’ll get through this.

    Reply
  3. Lisa

    Thank you for sharing. I am just beginning to learn about this disease after my boyfriend was recently hospitalized. Reading your story of fatigue answered a question of mine!

    I hope your donor is a match!

    Sincerely
    Thank you

    Reply

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  1. Managing PKD Complications | PKD Foundation Blog - […] anxiety and blood pressure concerns, she faced fatigue. From lack of sleep, a side effect from needing to go…

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