A few weeks ago, I read a horrifying article about a chronic pain patient in New Zealand and the terrible agony she suffered as she went years without a diagnosis. You really must read the entire piece HERE. Poor Elizabeth Howan tried for 12 years to find the cause of her pain, seeing doctor after doctor and even doing her own research to try to find a cause. At one point she was so desperate, she believed mercury poisoning from her fillings might be to blame - and she had ALL of her teeth removed! Sadly, it did not stop her pain.
As time went on, doctors who were unable to diagnose her pain began to label her as “delusional” and “probably schizophrenic” - and even wrote it in her medical records. But that’s not even the most outrageous part of Elizabeth’s story. In 2006, her complaints of stomach pain and difficult bowel movements were noted by a physician in her records, and he made a written recommendation to follow-up on that issue. However, it was never pursued.
Six years later, Elizabeth’s “it’s-all-in-you-head” pain was finally diagnosed as advanced bowel cancer. She died one month later at age 68.
I find it absolutely appalling that she suffered so long and right there in her records was the one solid suggestion that could have led to a diagnosis - and perhaps saved her life.
Please let me say first that I do not know anything about how the Australian National Health Care System works and whether Elizabeth had access to her medical records, nor am I blaming or judging her at all. I just wanted to use her story to remind us how important it is to know what your doctors are recommending for your treatment.
When you are ready to leave your appointment, ask your doctor if he is making any referrals or recommendations for you. You can also request a copy of the notes from your visit - with most medical offices completely switched over to computers, it’s a very easy for them to print or email it to you. Consequently, if that recommendation doesn’t get followed up, *you* must advocate for yourself. Make sure to voice your concern to your doctor, and if necessary, contact your insurance company and find out what is stopping access to the care you need. No one will advocate for you better than you can. No matter how great your doctor or how much you like them, they have many patients and cannot be on top of everything at every moment. Counting on the computer system or administrative network to inform you and properly keep track doesn’t always work. Orders get lost. Computers and people make mistakes. Your health is too important to leave it up to others.
If you keep your medical records and doctors' notes in a binder as I do, put your list of pending referrals and recommendations in the front inside pocket where you can find them easily and not forget about them.
Now for the further shocker...
Little did I know how close to home the lesson from Elizabeth Howan’s story was going to come for me. I recently had to switch health insurance companies. I had to gather up all my medical records and sort them out for the new doctors I was going to meet. I wrote about it HERE. Like the majority of patients, I never before kept copies of my records or ever asked for doctors visit notes......As I placed the pages together in a folder, it was a pretty overwhelming amount of paper. I didn’t read every line as I organized, but I knew that over time as I saw each specialist that I would become familiar with the information I had compiled.
When one of my new doctors ordered a Bone Density Dexa Scan, I was surprised. I was absolutely certain I’d had one within the last two years. I’ve had so many scans and x-rays that I truly believed I had had one recently. Imagine my surprise when I found that my last Dexa Scan was in 2003 and my numbers showed I was in a higher risk category. I should have followed up and had another scan two years later. However, it has been eight years(!) and the new scan revealed the unfortunate truth: I have osteoporosis in my lumbar spine at the age 42!
Isn’t it ironic? Here I was planning to write this blog post about following up on recommendations and keeping on top of your records - and it happened to me, too!
Where do I go from here? Well, right now I’m wearing a heart monitor AGAIN (ugh, they are so inconvenient and I always get a bad skin reaction to the electrode adhesive!) and this coming week I will meet with an Endocrinologist to determine how we are going to treat my Osteoporosis. If only I’d been on top of this, I might have started treatment a couple years earlier and prevented eight additional years of bone loss.
You can bet that I’m going to be more proactive with my own doctor visits now, making sure that I’m completely updated and aware of what recommendations and referrals are written there. I hope you will be as well.