Valen as a child
Our diet and how we approach nutrition changes as we age, especially as a PKD patient. When we’re younger, we are either too busy playing to worry about food or aren’t focused on the importance of what we put into our bodies. Then, as we age, we start becoming conscious of more things in life like nutrition, and food becomes a big social aspect of our lives.
When I was diagnosed with PKD at the age of 10, I was not given specific nutrition guidelines. I was advised to eat healthy, drink water and stay active; just like every person should do. However, when I became a dialysis patient at 18, I was forced to focus on and alter my diet. My awareness of potassium, phosphorus and fluid retention became important. For the majority of the time, following my bilateral nephrectomy, I was fed by a PICC line due to battling pancreatitis, so I was unable to have anything to eat or drink by mouth. After six months of being fed solely through the PICC line, it was an adjustment to start eating and drinking again. When I was allowed to drink again and was still on dialysis, I realized how quickly fluid accumulates in our body. For example, ice cubes, ice cream and popsicles all count as liquid that then has to be removed every couple of days via the dialysis machine.
Valen with her kidney donor, Sally, the day after their transplant surgery.
Immediately following my transplant, I gained a lot of weight due to the high dose of steroids I was prescribed. Being in my early 20s at the time, it did not take long for me to be unhappy about the weight gain. I spoke to my nutritionist and got his ok to join Weight Watchers. I lost a safe amount of weight each week and was able to lose all the extra weight I had gained. The most important lesson that Weight Watchers taught me personally is that you don’t have to stop eating a certain kind of food, you just have to monitor your portions and eat in moderation. Now that I am 15 years post-transplant, I continue to live by these lessons and am fortunate to not have any food restrictions aside from eating grapefruit because it interacts with my one immunosuppression medicine, Prograf.
Valen out eating one of her favorite foods, sushi, with her husband Noah.
In 2002, I was very close to losing my stomach. A week after both of my kidneys were removed, I had emergency surgery to fix a bleeding vessel in my stomach. I often think of that time in my life and am so grateful to be able to eat, because eating is a fun and social part of our lives. Adjustments, learning and accepting a new normal are all part of each stage of PKD. It’s important to take the best care of our bodies, but make sure we are enjoying life along the way.
How do you navigate nutrition along your PKD journey? What tips do you have from the different stages of PKD that you’ve endured?
Thank you for your info.
You’re very welcome, Rosemarie!
Interesting that you are allowed sushi! I was told by my nephrologists post transplant that sushi, as well as any raw or undercooked foods are not allowed. That includes ceasar dressing as if it’s made properly it’s made with raw egg! This is because of the added risk of bacteria.
Hi Tracey,
Thanks for sharing this advice. I too was advised of the same thing. I do not eat anything raw or undercooked. When I eat sushi, I only get veggie rolls, like a roll with avocado and cucumber in it. Thank you for your comment.
Hi Valen, when you take steroids, how does the weight gain happen? Fluid retention? Overeating due to excessive hunger? Just wondering as I am waiting for a transplant at UC Davis and UCSF and I am worried about the side effects of the drugs I will have to take, including weight gain.
Hi Lisa,
I am not exactly sure, it could be a combo of both. I will ask my nephrologist about this one, as this has come back into my mind with having another transplant ahead of me and knowing that my prednisone will be increased for awhile. I am currently on 5mg, but know it will go up for some time following my liver transplant. I’m not a big fan that weight gain will happen again, but I know that I lost it all once and hope I can do the same again. I do want to ask my doctor’s how I can try and avoid this from happening again, if at all possible. When I learn more about this from my doctor’s, I’ll be sure to share it with you.
Hey Lisa,
My infusion nurse told me that gaining weight when on prednisone is for a combination of reasons: retaining water, increased hunger and we store fat differently when taking prednisone. Hope this helps.
It was great to read so useful information.
I am from spain
Hi Manuel,
I’m happy to hear that this information was beneficial for you. Thanks so much for reading my blog. It’s fun to know that my posts are read by someone in Spain. Wishing you all the best!