Thursday, July 06, 2023
Maybe you are going into this kicking and screaming, like me. Here's my recent journey and some tips to make it smooth.
I did not expect to be in this situation for at least another 10 years.
One of my biggest reasons for staying in Rhode Island is the great relationships I've created with my doctors! Then in May, my rheumatologist told me he was retiring!
UGH! Arrow through my heart!
I appreciated him telling me before he sent out the formal letter. But I was lost on what to do and in what order. And I was a little scared the new doc and I wouldn't get along or they would take me as pushy or a know-it-all. I had to start all over again!
Panic and Flashbacks.
A few years earlier, my insurance changed and I had to wait 7 weeks to get my infusion instead of four.
It was an overwhelming two months. I was scared I wouldn't be able to function without the meds. I feared having to go on disability. I worried how much pain I would be in. I felt dread thinking about the lack of sleep I would get.
Heart racing, feeling dizzy, I remembered I had done everything I could to plan for the change at the new year and all was for naught! I had no control over the decisions or actions of the insurance company, the drug company and the shipping agency. My doctor's office was on top of the calls to the insurance agency but was at a standstill until the new year.
Finally, everything was approved (for the same drug I had been using for 10 years) three weeks after my anticipated infusion date.
Relief, but I was still concerned of the possibility of another mishap. My anxious state calmed a little. when I remembered I survive it. Nothing serious happened; even if it did, I would have survived!
I had a lot of things to accomplish if I wanted this new disruption in care to be a seamless transition. I had no idea of what I needed to do first. There were so many things running through my mind!
I had to get my head to stop spinning!
I started simple and wrote down what I needed: a doctor accepting new patients, a compatible doctor, a referral, an infusion center, a prescription for the IV drug I had been using and I needed it all within a few weeks.
I asked around, to anyone that had RA, if they liked their doctor. I called the best sounding one and prayed! Unfortunately, it was an informational call. I needed to get a referral before they would schedule and appointment for me. Drat!
Once the referral was accomplished, I called again. New dilemma: the new practice didn't have a single rheumatologist with open appointments until late August! That would have been 12 weeks from my last infusion! Plus, that was only the doctor appointment. I still had to get my infusion appointment and medicine approval from the new doc and the insurance!
My body was about to hit convulsions level!
One day, in the middle of this panic-state, I had an epiphany.
While I was at a traffic light, I just blurted out, "Stop worrying, it is going to work out! You won't have to wait 12 weeks." I surrendered the worry and doubt.
I still took action but with more confidence and peace. I called the potential new doctor's office. I was kind and sweet on the phone but I made sure to let my voice transmit some panic. I got a caring person that, within a few phone calls, went to the medical director about my situation. I asked her opinion about my next steps might be while I waited to see if they could expedite my appointment date. But there was no other action unless I wanted to choose another office. I didn't. I had a feeling that this was the right one for me so I waited and I trusted.
That was a tough three days!
Good news! I got an appointment within a week of my panicked call and a few days later the infusion place called. I know this kindness is, in part, due to my actions and character. Still, I did not expect it all to flow so smoothly!
My first visit went great! And she knew how to circumvent any other delays by having me get bloodwork (like retests of TB and Hep B) that might have otherwise held up my infusion date.
I want you to be successful too!
I have listed some points below to help you appear to be a person your doctor's office would desire as a patient and one they are willing to go to bat for.
1. I organized my info and sent what I could ahead of time. (I didn't even know if they would take me as their patient!) "Info" includes any medical records, referral from my primary, a release of health information from my former doctor's office and any of the new office's intake forms.
2. I gathered my medical history information, wrote down my recent meds and conditions. I reviewed the dosages of my current meds and vitamins and put them in my RA-life organizer book.
3. I wrote down my current symptoms of the last week in my Wyld Chyld RA-life organizer (Click button below or purchase on Amazon https://a.co/d/b961BlE). I rated my sleep, diet, pain and more.
4. I also checked to make sure my current pharmacy and doctors' info was listed in the book and accurate.
5. Another section I wrote in of my organizer was the office visit section. I listed questions throughout the week that I might have for the doc. If I were to get side-tracked with what she was advising me, at least I could refer to my organizer. It also reminded me to tell her that I got bloodwork done and to look for that to come.
Have you ever heard the saying, "it's not what you do, it's what you don't do"? This can be exemplified in an office visit when you don't have your information together.
I wanted to portray that I respected the doctor's time as well as their office staff's. If I have my stuff together, I am one less problem for them, and maybe even one they look forward to seeing.
Think of your appointment as an important business meeting.
The meeting is wasted if somebody forgets to bring the calculations, reports or other important information. Sometimes you don't know what is important until the expert tells you. Do your best to find all related data. If you forget something, a date or procedure, at least you have other details. You want to limit the time needed to research the forgotten information and utilize that time on you, your disease and the management of it.
Just as in a business meeting, take notes and set goals. What do you want accomplished, reasonably, in the first visit? Did you bring a pen and paper (or the Wyld Chyld organizer) to write down the advice the physician gives you? (Do this even if you never forget anything.) This, again, portrays a put-together patient that respects the doctor's time.
When I had my visit, I had all of these points done and I felt like she was impressed. She even commented so! I don't believe you have to be uptight and formal as in most stereotypes of a business meeting. I was business-like but also myself, friendly, goofy and inquisitive.
Near the end of my visit, I asked for clarification and repeated back what she told me so that when I left I wouldn't have to attempt to hunt down a busy doctor in a busy office who probably wouldn't remember all of my details.
Good luck!