Second Opinions: You don’t know what you don’t know

By Lori Hartwell

In my lifetime of living with kidney disease, I have seen my fair share of doctors to manage my care effectively. Last count, I have 10 different doctors I see on a regular basis. One thing I have learned is that health care is a “medical practice” and I’m the one that is being practiced on! It is critical that I advocate for myself and do the leg work and research to get the care that is right for me. Yes, it is more work, but I have lived 50 years with this illness, which proves this extra work is lifesaving.

Doctors have different communication styles and ideas on how care should be provided. They often offer a type of treatment because they are more comfortable with it or it’s financially favorable to the insurance or health care company.

I have had several instances when one doctor suggested one route of care and when I got a second opinion, the other doctor gave me an entirely new option I had not thought of before.

For example, eight years ago I was getting evaluated for my fourth kidney transplant. I have very high antibodies, they were at 100 percent at one time. When I was being tested at my transplant center my antibodies were 80 percent and the doctors goal was to put me in a living donor/kidney Paired Donor (KPD) exchange program to get the best match for me to get transplanted and avoid any desensitization protocols. KPD is a transplant option for candidates who have a living donor who is medically able but cannot donate a kidney to their intended candidate because they are incompatible or not a good match.

Desensitization protocols are when you are treated with medication to suppress your antibodies prior to transplant. A blood test determines what antibodies you may have to your living donor. Then those antibodies are in effect put to sleep so they won’t attack the newly transplanted kidney. I chose to switch transplant centers and go with desensitization protocol as I felt more comfortable with this option.

It wasn’t easy as I didn’t feel all that well. To do double the work of going through another transplant evaluation at the time seemed overwhelming, but I knew I had to do it. My gut told me so. I am now seven years post-transplant and my kidney numbers are great.

I see a Pulmonologist because I had some breathing problems a few years back. My doctor could not figure out the exact cause but had some ideas. He suggested I get a second opinion to make sure he was not missing anything. I saw another specialist who agreed that most likely my pulmonary problems were due to an antibiotic I had taken. This is what my first pulmonologist had thought. This second opinion was vital to figuring out my allergy.  I now have on my medication list that I am allergic to this antibiotic, so I will never get it again.

I have also had scenarios where the doctor was not up to date on some of the medical technologies, seemed to rush care and did not make eye contact, looking at his notes more than me. In these cases, I sought to find a new doctor ASAP.

Being an advocate for your own care is hard work. It’s helpful if a family member or a friend can help you assess the situation to comprehend what doctors are telling you. Take notes at a doctor’s visit and prepare a list of questions you want the doc to answer. It’s great to talk to a fellow kidney peer. I often seek out my peers to discuss a medical scenario I am experiencing, and I am always provided new insight to make the best choice of care for myself.

Don’t be afraid to get a second opinion so you can be confident in the healthcare choices you make.

Lori Hartwell is the Founder & President of Renal Support Network (RSN) and the host of KidneyTalk™, a radio podcast show. Lori was diagnosed with kidney disease at the age of two. In 1993 she founded RSN to instill “health, happiness and hope” into the lives of those affected by chronic kidney disease. Lori is also the author of the inspirational book Chronically Happy: Joyful Living in Spite of Chronic Illness and is a four-time kidney transplant recipient.

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