How to Not Freak Yourself Out with Medical Research

At 10PM I opened my internet browser. I guess I was bored. I remembered something my doctor had said and I wanted to investigate.

We were discussing kidney disease research and diet.  He mentioned that because my kidney issues came from a congenital disorder my case was unique and that not a lot of research had been done.

Was this true? I thought Google might know, so I typed in, “kidney disease and VACTERL association.”

Print your research to share with your medical team.

I just love Google. It knew what I wanted to see and returned a research study entitled, “Chronic kidney disease in the VACTERL association: clinical course and outcome.”

Someone had done some research.

It was a published study from 2008 that even listed as an author a doctor that was there for much of my surgeries and care. I knew it was trust worthy (This is important in the online world of profiteering and sensationalism. It is way too easy to freak yourself out.)

Here is the main conclusion of the study:

“Based on these results, VACTERL patients with CKD (Chronic Kidney Disease) develop ESRD (End Stage Renal Disease) more frequently, experience more complications with dialysis, may have a poorer transplant outcome, and have more severe growth failure than controls.” 1

Not great news.

This was familiar territory for me. Finding internet stuff that can do a number on your stress level is all too common. I could have easily gone down the panicky, “oh, no!” road, but I thought higher ground would be better.

It is absolutely vital to research your health, and especially a diagnosis. This article, though it had a grim prognosis, offered some other information that my doctors and I not only found helpful, but possibly prevented painful trial and error of something that was never going to work.

Your medical team cares for you, but it is still your health. It is up to you to learn about what’s going on in your body so that you can make informed medical decisions. Trust your doctors, yes, but also take responsibility to be as informed as you can.

Now that you have a juicy new research article, you also maybe have some harsh news as I did. If that’s the case, and even it if is not, here are three must remember tips about understanding research:

1. The study participants are different than you. They may have your same diagnosis, but they do not have your DNA, your environment and your spunky personality.
2. A study reaches a result when a statistically significant number of participants confirm or debunk a hypothesis. Statistically significant means that the result was likely not due to chance. That’s it. It doesn’t mean absolute. If the participants did not have a great outcome (or even a fantastic one) it does not mean that you absolutely will.
3. Bring your research to the attention of your medical team. They can help you understand what has been tested and exactly what the conclusion may mean in your case. Print out the studies you have found and haul them with you to your next appointment.

As for my study, the participants were twelve children who had VACTERL and kidney disease as a result. VACTERL is such an odd diagnosis that can manifest in lots of different ways; I knew that their results did not have to be my results. The article did tell me that I need to be vigilant about my health and to make sure my medical team looks at the totality of my systems and body even when addressing only my kidney.

Rather than feel freaked out, I felt empowered. I slept peacefully that night.

Has medical research done a number on your stress level? What are your tips for researching your health?