Jay Gustafson - My Story (Written: March 2013)
Updated: Jul 3, 2019
My name is Jay Gustafson and I am the Vice President of the Dent’s Disease Foundation, I am also a 31 year old Dent’s Disease Patient. As a member of the Dent’s Disease Foundation part of my focus is going to be spent on sharing “my story”, in an attempt to encourage dialogue and the sharing of information amongst Dent’s Disease Patients, Families, and Friends. The reality is, that there is very little documented studies on Dent’s and also very few doctors who know much about the disease. Given this reality, it is important that as a community we are helping “share” information in the short term, and long term encouraging studies and greater focus on the disease within the medical community.
As it relates to my experience with Dent’s, I believe it is important for me to share my experience as it relates to “Diet”. Similar to other patient’s I’ve met with Dent’s, I was given no real restrictions other than (low sodium) as it relates to my diet throughout my life. I ate what I want, when I wanted, and how much I wanted, all without even thinking about how it could be affecting my disease. Throughout my youth and adult life I would go to my semi-annual nephrology appointments and was essentially told the same thing each time “Your #’s look ok, slightly up, but if you feel well, just keep doing what you’re doing”. It was until an appointment I went to in the fall of 2010, where I questioned this advice.
In this particular appointment, my creatinine went up pretty significantly and was at 4.3, which was the highest it had ever been. During that appointment my doctor told me that I would likely need to start thinking about the possibility of “dialysis or transplant” in the next 6 to 12 month, because at the time it appeared my condition was deteriorating quickly. Instead of going on my way and “living” with this reality, I asked my doctor, “Is there anything I can possibly do to help prevent, reverse, or delay this?” His response was that there isn’t much info out there on Dent’s specifically, but that some patients with chronic kidney disease who have moved to a low protein / vegetarian diet have been able to delay kidney failure. It’s AMAZING to me that I never asked this earlier, but after leaving the appointment I made the decision I was switching to the diet immediately and that it was time for me to try and take some control in my Dent’s. Immediately after the switch I saw positive improvements in my kidney function and additional cholesterol (which was never bad, but now is very good). My creatinine over the first two months dropped from 4.3 to 3.5 and as of March 2014 is hovering around 3.1 – 3.3 in any given month.
This lifestyle change, which sound drastic to some, has without question delayed my own need for a Kidney Transplant. After seeing my results improve, I had a newfound belief that while I maybe couldn’t cure Dent’s, I could hopefully better control it…….all with doing something as simple as cutting out the amount of fish, meat, dairy, and egg that I eat. I will be blogging more in the future about my approach to take control of my condition and hope to hear from others on things they are doing to do the same.
Low Protein / Vegetarian Diet
No Meat or Fish
Greatly reduced portions of products with dairy or egg
When eating out ask for “light cheese” on meals containing cheese
When eating out ask for “light salt” when preparing food
Use olive oil / vinaigrettes vs. cream based sauces
Common Foods Eaten
Breakfast – Fruit, Bagel with Humus, Juice
Lunch – Sandwiches, Soups, Salads, and Pizza (all with vegetables added)
Dinner – Pasta Dishes, Rice Dishes, Pizza, Salads, Tacos (all with vegetables added)
Snacks – Fruit, Chips, French Fries,