Getting What You Need May Not Be So Simple When Your Doctor Moves Offices
Sometimes the saga of arranging doctors’ appointments can be humorous. Sometimes the saga can become outright ridiculous. And sometimes things work out just as they should in the end.
Earlier this summer, my rheumatologist changed practices (again) to join one which specializes in arthritis. When I first met her, she owned her own practice. Then she had joined a small medical center which included many specialties. Now, she is part of a practice which has multiple offices in the area among which the doctors rotate between locations.
Around July when I called for an appointment in one of the new offices, the earliest appointment I could get was in mid-late September. Of course, most of her patients from the previous practice were trying to get reestablished in one of the new offices. My appointment was scheduled from September 20.
I wasn’t sure what to expect at the new office, but at least I knew that things shouldn’t change too much since the important relationship I already had was with my rheumatologist. Of course, there was lots of paperwork to fill out and I brought a copy of my medical records which had been requested from the other medical center. I realized that I would need to learn this office’s procedures, but it was a bit odd not recognizing any faces as I checked in.
When I did get back to see my rheumy, the visit went smoothly. I didn’t really have many complaints which gave her the extra time to hound me about exercising more. (I know that I need to do that for my own well-being, not just for my arthritis.) We also talked about scheduling the next round of Rituxan infusions.
Of the 7 rounds of Rituxan infusions I’ve had so far, the more recent 5 took place at the local hospital outpatient infusion center. I like the nurses there and we have worked out a comfortable routine. The nurses understand now that my veins are difficult, so if there is any problem getting an IV started, they are willing to call in extra help from someone else in the hospital. I appreciate that tremendously.
The nurses also understand that I have had several infusion reactions and that our routine of keeping the infusion rate slow actually saves time in the end. No need to stop the IV, administer extra steroids and benedryl, and wait for those to take effect before getting the IV started again at a slower rate. Of course, my rheumatologist must write the orders to reflect our altered protocol, but at least this avoids the drama which has accompanied half of my infusions.
So in September when my rheumatologist and I discussed this next round of Rituxan, she informed me that they would take place right there in the office which had the capability of giving infusions. “But I am comfortable with the hospital’s center,” I said. My rheumatologist told me that she was told that very morning that the staff in the office would not spend the time to arrange infusions elsewhere. That if she (and I) wanted that to happen, then my rheumatologist would have to spend the time on the phone with insurance and the infusion center herself.
Well, that’s just crazy expecting the doctor to spend her precious time arranging Rituxan infusions rather than seeing patients. So I was introduced to the person who would be arranging and giving me the infusions in the office. This meeting was very interesting indeed, but I tried to maintain an open mind while I also tried to bring the “infusion nurse” up to speed on my personal needs.
First thing she handed me to fill out was paperwork for prescription assistance through a different program which I had used several times before. It is not possible to participate in both programs so it didn’t make sense to me to apply to this other one while I still had a valid enrollment in the first one. But I complied as she insisted that it was “just in case” so that the specialty pharmacy (who would be calling me to ask for my approval to send the drug to the office?) could collect payment. When receiving infusions at the hospital, I was never involved with the acquisition of the medication beforehand.
Next, the infusion nurse was looking at available days on the calendar to schedule infusions. She wanted to know when my last infusions were (end of April and early-mid May) and insisted that we pick dates that were more than 6 months post the 2nd infusion in May. Insurance might not pay for it otherwise, she said. So much for avoiding the return of symptoms which had been happening at around the 7-month mark.
She offered dates before and after Thanksgiving. Turns out that another patient would be getting Rituxan infusions around the same time. I expressed that it would be great to have a “Rituxan buddy” but learned that it would not be possible since the “infusion clinic” in the office only had ONE PUMP!!
I let the nurse know that it can be difficult to get an IV started with my veins. She said, “that’s okay, I’m not afraid of a hard stick.” Maybe that sounds okay to you, but it has taken 9 tries before (on more than one occasion) to get an IV started. Now I’m afraid of your cavalier attitude, I thought.
The nurse tells me to come in at 9AM on the infusion days. Really?! I let her know that the infusion will take ALL DAY. Oh, she knows, she says, but “that’s usually just the first time when it takes 5-6 hours.” No, let me finish. We can’t go faster than a certain speed because I’ve had reactions several times in the past … and … we need to hang bags of the steroids and benadryl beforehand so that work better. No boluses here. I’m usually at the hospital for 8 hours on infusion day when there aren’t any problems.
Finally, the nurse begins to listen to me and my concerns. She says that she’ll talk to the office manager about arranging my infusions at the hospital. That sounds great to me and it confirmed my suspicion that limiting patient infusions to their office is a busy business decision, not necessarily a patient-need decision.
But the saga is not quite over. I wait what I consider a reasonable amount of time to hear word on the hospital scenario. Finally, I call the office a month later. The nurse tells me that she had just spoken with my rheumatologist that morning about arranging hospital infusions. I’m told that the nurse and my doctor had not been in the office on the same days in 3 weeks to discuss the matter. Wow.
So my rheumatologist writes the orders and I need to come in to sign chemotherapy consent forms as per hospital policy. I swing by the office that afternoon. I call the hospital center almost a week later but the orders had still not been faxed over. Good grief. How long is this process going to take?
I finally get a call from the doctor’s office this past Monday (Oct 28) telling me that the infusions are scheduled at the hospital for the same days before and after Thanksgiving which had been planned previously. Although it was very considerate that the office nurse make the arrangements, I really would have preferred different days. Those dates were the limited ones available in the doctor’s office, not necessarily my preference.
So, final bit to my story. I turned around and called the hospital infusion center directly asking to move the infusions to a closer date. I knew that anything within in the next two weeks would probably not be possible because they are so very busy, and because I take up one of their chairs for the entire day. But I was eventually offered infusions on two Sundays (Nov 10 and 24) at 6AM.
Very cool. It’s only a couple of weeks earlier, but I’d like to see if having a round of Rituxan only 6.5 months from the previous one will truly keep my symptoms limited. Now I just need to get some lab work done this Friday to make sure that my blood counts are good.
I hope that next time is smoother and that I develop a good relationship with the new rheumatology office’s staff. I’m afraid that I probably have labeled myself as a trouble patient already. Hopefully, the nurse will understand that I was actually trying to save us both from potential problems on the day of infusion by asking to go elsewhere.
Round 8 Rituxan - here I come. Let's just make sure that the days are blessedly uneventful.