My PCP (primary care physician) is so kind and caring. I never have to worry if he believes me. I don’t have to convince him of how I feel. He is always supportive and he knows he can trust me as I can trust him. The rarity of that type of patient-physician relationship is not lost on me as a nurse and certainly not as a patient. I cannot stress enough the importance of having a good PCP when you are chronically ill. If you could imagine your healthcare team being a wheel, your PCP should be the hub of that wheel directing your care. All interaction with specialists should flow to and from your PCP. It only took 13 years of chronic illness for me to realize that! In sharing my story, I hope you can learn from some of the mistakes I made and make sure you have a good healthcare team in place for yourself if you find yourself suffering from chronic illness.
I was diagnosed with diabetes 13 years ago. Back then, I just had a country doctor that treated me for runny noses, sore throats and the like ever since I was a kid. Although he was a good physician, his specialty was acute illness or injury. He dabbled in managing a few patients with high blood pressure, but anything else he sent to a specialist. It wasn’t until I became a nurse that I realized that my country doctor, as good as he was, didn’t know what else to do about my diabetes because of the poor response I’d had to treatment. My country doctor died and I was forced to start all over with a new PCP.
Thinking I would get cutting edge medical treatment, I went with a brand new internist fresh out of medical school. I saw her for a couple of years, but I got tired of being beat up every check up about my weight and made to feel like it was my fault I had diabetes. My diabetes was uncontrolled if I was pared down or plump. I didn’t respond well to dietary changes or changes in medications. Rather than scratch her head about my case, she blamed me. I absolutely dreaded going to the doctor at that time and felt like such a colossal failure as a patient and a nurse. I’d been a nurse for four years before I had the fortitude to ask for a endocrinology appointment. At the time I was a LPN studying for my RN licensure while trying to work full time and I was stressed to the nth degree. I’d had it with being berated by my PCP about my weight. I’d almost start to hyperventilate when the tech would call my name in the lobby and then invite me past the clinic door to get my weight.
After having my first appointment with the endocrinologist, I felt hope. Not once did he tell me it was my fault. There was no finger pointing or blame. He came at the problem with a team approach and told me we were going to work together. I was thrilled after a few visits when he agreed to take over my primary care. I was required to notify him immediately of any illness like a cold, fever, nausea, vomiting, or diarrhea that can change the blood sugar so he could treat it immediately and adjust my insulin doses, so why did I need a primary care physician outside his care? I didn’t. That’s when I realized why I had to ask for the endocrinology appointment rather than wait for a referral. Most endocrinologists manage the primary care of their patients as long as diabetes is the only illness that patient has and that was the stipulation for him taking on my case. So, for years I enjoyed a good PCP relationship with my endocrinologist.
That all changed when I was diagnosed with sero-negative rheumatoid arthritis (S-RA). I think my endocrinologist was too kind to say, “you really need to get a good PCP” because he had been managing my care over the last seven years! He is an excellent endocrinologist, but he told me point blank, “I don’t know anything about rheumatology”. He did work with my rheumatologist during my first year of diagnosis and they agreed the reason I’d never really had any lasting response to diabetic treatment was because I was not a Type II diabetic, but that I had Latent Autoimmune Diabetes in Adults (LADA) also known as Type 1.5. I felt vindicated after those years of being blamed for my weight by the internist I’d seen previously.
It wasn’t until I was hospitalized because of complications of RA that it was apparent to me that I really needed a good PCP. I had been acting as my own PCP between these two specialists and it was stressful keeping up with what each said, sharing records and information. The two specialists were treating their specialties, but there wasn’t anyone but me looking out for my overall health. I was woefully unqualified to act as my own PCP. When you are admitted to the hospital, they want to know who your PCP is and I listed my endocrinolgist. In this day and age of hospital care, specialists are not pulled from their clinic to admit patients to the hospital. Even though my endocrinologist told me to go to the ER and I was subsequently admitted, his name did not go down as my PCP and he wasn’t even allowed to consult on my case because I wasn’t admitted for complications for diabetes. Instead, I was assigned a hospitalist.
A hospitalist works for the hospital and is assigned to patients who do not have a PCP or whose PCP (like mine) opted not to be admitting physicians. Specialists are rarely admitting physicians. Most of the time they are consultants on a case. I had to explain everything going on with me to a complete stranger who did not know the first thing about me. As a result, my hospital stay was lengthened as the hospitalist started over at square one with me and built up to the issue for which I was hospitalized for which was a possible stroke. As it turned out, after much medical expense, my “stroke-like” numbness was actually inflammation during a flare pressing on several nerve bundles. My rheumatologist could not be consulted because he practiced 100 miles away. That episode scared me. I was the only person who had the knowledge of the combined care of endocrinology and rheumatology. I kept thinking after that hospitalization what if I’d actually had a stroke and couldn’t talk? I knew that my endocrinologist could no longer be my PCP and that I had actually abused the relationship because he told me all those years ago that he was willing to be my PCP as long as diabetes was my only illness. I’d become a complicated patient.
Complicated patients with multiple chronic illnesses need the care of an experienced PCP, preferably a MD with an internal medicine specialty in general care. We aren’t guinea pigs for the physician just entering practice after completion of medical school. You need a seasoned doctor who knows something about your chronic illness. You also need to make sure that the PCP you choose has admission privileges at the hospital you prefer and you should ask if admitted to the hospital, who would be delivering your care. Your first appointment with a new PCP should be like a job interview. After all you are interviewing someone to manage the care of your most valuable asset, your body.
I was fortunate enough to find a PCP who is a MD in Internal Medicine who has a good understanding of RA. He is perfectly comfortable with my endocrinologist handling my diabetes and they discuss my case back and forth. I was a bit worried my endocrinologist might have his feelings hurt when he found out that I had acquired a PCP, but he was relieved and thanked me for taking that off his shoulders! My PCP and endocrinologist are colleagues. It’s important there is good communication between your primary care physician and your specialists. Ask your primary care physician if they are getting progress notes and test results from the specialists and if they are not you can sign a release form at your specialists office so they can be sent each visit. If the specialist office doesn’t do this, then you need to get a copy of the visit or progress note and any test results each visit and hand deliver it to your PCP. Your PCP must be the central hub of all your healthcare in order to do his/her job effectively.
Still use to acting as my own PCP, I chose a new rheumatologist that was a poor fit for me. To make a long story short, It was my PCP that told me to fire her after I had to book an extra visit for him to treat me for complications of a drug she prescribed because she wouldn’t listen to me. This PCP stood up for me and had my health in mind. He was angry on my behalf that I’d been so poorly treated by a specialist. He arranged for a new rheumatology consult for me at the end of January and in the meantime, not wanting my RA to worsen between rheumatologists, he called a colleague for help with prescribing and ordered a low dose of methotrexate (MTX) for me. No one has ever wanted to prescribe MTX for me because a few times early into my diagnosis I had some elevated liver enzymes and a ultrasound that showed I had a fatty liver. My PCP went to bat for me reviewed my chart which revealed my liver enzymes have been within normal limits for over 12 months. He didn’t leave it at that though. He had me come in four weeks after having been on the MTX for lab tests which revealed my liver enzymes were still normal on the new medication.
I’ve told him how much I appreciated having a PCP that I can trust and who is not put off by me being a informed patient and being so active in my treatment plan. He laughed and said, “I wish all my patients were as involved in their care as you are,” and he meant it. It is such a relief realizing I have a PCP who is willing to act as the hub in the wheel of my healthcare team, that I no longer have to accept that burden of coordinating all my care. Should I ever be hospitalized again, he will be my admitting physician and there won’t be a day of information gathering and needless diagnostic testing because he will know just where I am in my treatment plan. That gives me a peace of mind I never had managing my own illnesses.