Where my time has gone and my healthcare tips for you

Are Hospitals Sidestepping Admissions...

Where my time has gone and my healthcare tips for you

I probably should have written this post months ago but I was hopeful I’d have more energy and could keep up. If you aren’t aware, I have been battling breast cancer since October 2013. I had been on chemo since November of 2013 and it caused me to step back from most of my work, hence no new blog posts or articles. I also had the unfortunate finding of a massive size kidney stone which required kidney surgery March 3rd, so I have been focused on my health and family, and bits of advocacy as I feel up to it, or literally can. Chemo hasn’t been very kind but I finished my last treatment April 14th. Yae for that! The journey and battle are not yet over. I will have surgery to remove the cancer at the end of May, followed with somewhere between 16 and 30 radiation treatments, beginning around 3 weeks after surgery.

Giving our oldest grandson a bit of love

Making the best of chemo

I am taking a lot in as I travel this patient journey and the state of healthcare and my experience in it, once again, and will have some future articles about the good and bad of what I’ve experienced. The only thing I want to say now that I urge every patient to do is take someone with you to all doctor appointments, tests and treatments to be your second eyes and ears because you can’t remember it all. You also want an advocate that will ask questions you haven’t thought of, or someone who will advocate for better clarification of what is being said if you don’t understand, or the provider is talking too fast to comprehend it, or even for your advocate to take notes. My wonderful husband has been with me for every appointment, test, and treatment. I am not only extremely grateful for his loving support, but he has kept me on track and reminded me of things discussed with my medical team that I failed to remember. He has asked questions that concerned him or that I forgot to ask. Even though I’m a nurse the role is reversed when I am a patient and the effects of illness, chemo and the other medications I am on prevent me from being at my best, so I am grateful that I have had my husband by my side to help me.

Get and keep copies of everything! Every lab test, diagnostic test, physicians, nurse practitioner’s, or physician assistant’s report because one health complaint can lead to a series of doctor appointments, labs, and tests and you will easily lose track of what’s been done and what the results are. If you are seeing more than one doctor have each doctor send copies of everything, including their notes and reports to your primary physician to keep him/her abreast of everything going on, which will be included in your file in your primary physicians office.

It doesn’t hurt to also get a business card of every physician you’ve seen and line them up on a copy machine where you can make copies that you can give to any new physicians, so they can easily look over the doctors you’ve seen on one sheet of paper. Keeping everyone on the same page should help eliminate repeat tests and is an easy way for doctors to consult with each other should they have any questions or want to discuss your case.

One doctor appointment that I had in December of 2003 turned into a 5 year battle for a diagnosis of 2 chronic illnesses, Sjogren’s Syndrome and Chronic Fatigue Syndrome. By the time the diagnosis came, I had been through 13 doctors of almost all the specialties, traveled to the Cleveland Clinic twice, had 2 surgeries, countless lab and diagnostic tests, and medication trials out the wazoo! I even sat with the board of my health insurance company, with my family, battling a denial to the Cleveland Clinic. These are old lessons I learned back in the early to mid 2000′s that I am now revisiting with breast cancer and sharing personally with some friends dealing with significant health challenges. I have personally gone back into 5 years of my filed health documents to look up results as new information has come out about possible causes of autoimmune diseases. It was a lot easier than trying to track it all down!

Healthcare is requiring us to be our own advocates like never before! Don’t be intimidated to speak up for yourself or a loved one. Ask questions, make sure you are comfortable and trust your physician, or get a new one. Expect to be treated with respect and dignity, and for your physician, physician’s assistant or nurse practitioner to listen to your concerns, complaints, and questions. You should never feel intimidated by your healthcare provider. The only way you will improve your health or maintain it is if you feel comfortable confiding and speaking to your physician. If you don’t understand what you are being told or the healthcare provider is speaking too fast or has an accent that makes it difficult to understand, speak up. You MUST know what is going on with your health and what the plan of care is to improve it.

Lastly, don’t hesitate to get a second opinion when you are diagnosed with a serious or chronic illness. Because Chronic Fatigue Syndrome (CFS) has no definitive test and is diagnosed based on symptoms and a certain criteria set, I sought more than one opinion and was actually diagnosed with CFS by three different physicians. Remember, you are in charge of your own health and healthcare. Take the lead and take a trusted advocate with you.