I am struck again today of the wisdom of getting a second opinion. I was just at a luncheon for the Florence Crittenton School which supports teenage moms. The speaker was Linda Armstrong Kelly, Lance’s mom. She told the story of when Lance was first diagnosed with stage IV testicular cancer. They set up the chemo regimen, all was in place and a friend told them to get a second opinion. They were aghast – all was arranged, they couldn’t rock the boat with a second opinion! They were persuaded to and learned from the second doctor that the chemo he was about to get would have affected his lungs, preventing him forever from competing in long distance cycling. So they got a third opinion, and ended up with a regimen that not only saved his life but allowed him to pursue his dream.
I, too, felt the wisdom of seeking a second opinion. As I mentioned yesterday, what I have is rare, and there will never be the kind of double-blind randomized studies that are the gold standard for knowing what treatment is best. The most I can look to are case reports, letters to the editor, and personal opinion, which I have sought from experts all over the world. Fortunately because of my professional contacts I have had access to transplant nephrologists in Atlanta, Connecticut, California, Chicago and others. I explored other centers to see if anyone had a good experience with HUS. Several centers had one or two patients, no one had a lot. Most of the response I received actually was from the pediatric world where there are children with aHUS, but those kids unfortunately tend to do much worse than adults.
I ended up deciding to go to Mayo for a second opinion. I reached out to several other centers, Cedars-Sinai in CA, Cleveland Clinic, a few others, and was directed to Mayo as a high volume center that specialized in the most difficult cases. This caused some problems with insurance since Mayo was not in our “centers of excellence” network (which incidentally I had built).
I went to Mayo the last week of September for a two day consultation and it was a really valuable and worthwhile experience. I met with the transplant nephrologist, surgeon, high-risk obstetric specialist, dietician, financial counselor, social worker, and a hematologist. I had a chest x-ray, EKG, urine samples and they drew THIRTY-ONE tubes of blood! (Not kidding – the tech said I won the award for most tubes ever drawn). Bottom line was the protocol they recommended was very similar to the plan we had developed here in Colorado. They have a very detailed protocol and a really slick operation but barring any new wrinkles, we are proceeding here in Colorado.
It wasn’t all work – there is an amazing clothes shop just across the street from the clinic – (www.hersclothing.com). My mom and I visited between appointments. Trust me – this became a VERY expensive trip.
So bottom line – always get a second opinion. Don’t worry about upsetting the apple cart or offending your medical team – if they are offended, find a new team. A good team will welcome confirmation of a plan or input that may lead to a better outcome.