So, IVIG went well, and I was feeling great. I still have symptoms from the autonomic neuropathy, but doctors were clear that those issues may not resolve. The most important thing is that the neurological issues have stopped worsening. In the midst of it all, my roommate and I were moving, so it was somewhat hard to tell if I felt tired because I was just stressed, or if I was still dealing with excessive fatigue, and other issues from the Behcet’s and related autonomic problems.
I was excited to see my doctor last week, because I wanted to discuss our plans for continuing IVIG, including scheduling, dosages, and getting a port. I had thought my doctor was back from maternity leave, but she wasn’t. This is a problem because the nurse practitioner covering for her, is not, in my opinion, competent. My rheumatologist had introduced me to her prior to my IVIG approval, though the plan to begin IVIG was already in place. When the NP took over for my rheumatologist, I was still waiting on the insurance authorization. Getting the authorization was complicated by the fact that my insurance company was taken over by another company. Some patients, including myself, had to wait an additional 6-8 weeks while new authorizations were drafted. I had been calling the office to make sure they submitted a second request, and put it through with a rush, as I was extremely ill. I’d been in and out of the ER and admitted to hospital twice, so I went to see the NP to explain to her that I needed another steroid pack, and for them to contact insurance.
When my prescription wasn’t phoned in within 24 hours, I called the office, after another 4 days, I called again, and asked not just about the steroid pack, but also about the IVIG referral. 3 days later I had to make yet another call, and was accused of filling the script (I hadn’t). The NP chastised me, and said she’d phone in another pack…the original had never been phoned in…and then suggested that I go to another rheumatology center, because IVIG wasn’t a standard Behcet’s treatment.
Insurance eventually approved IVIG, and I went forward with it. I had to tell the RN and medical assistants at the practice to explain to the NP that we had already put a plan in place to start IVIG. In fact, NYU was included in the decision to give IVIG a try. I was aggravated when she called the day after IVIG to see if it had worked because it felt like a setup. If I was honest about the massive headache and aching muscles, then she could use my words as evidence the IVIG hadn’t worked. She could also use my admission that it had worked, which would have been a lie at that stage, as proof I was just saying what the doctors wanted to hear. I felt utterly trapped.
So, let’s go back to my follow up last week with my NP. I’m excited because I don’t know I’m seeing her, but even when it is her, I’m convinced we’ll be on better terms. Now I know that IVIG mitigates my symptoms, and has the capacity to really give me back a quality of life. I’m also convinced she’ll agree to the port referral, because every nurse and other doctor I’ve seen, has stated that the port makes sense. Not having one is odd to most of my nurses, since IVIG for conditions like I have, typically lasts long term. Of course, NP unfortunately doesn’t know what she’s doing.
She walks in and says hello. I tell her about the side effects I had, but that I was also getting ill, and had been ill, for the past two weeks. I also state that I had discontinued my Cell Cept because of being ill. Immediately she becomes visibly annoyed. She starts asking why I haven’t begun to take it again. I tell her I have still been coughing a lot of phlegm up, and running periodic fevers. I have a history of bad bronchitis, and didn’t want to risk an infection. She tells me to go back on my full dose immediately.
Yes, folks, the NP responsible for treating rheumatology patients, was angry with me for discontinuing immune suppressing drugs during an illness…which is exactly what my doctor and pharmacist advised me to do.
I let it go. It isn’t worth arguing over, nor was it the reason I was scheduled for that day. We finally start to talk about the IVIG, and my side effects etc. I don’t get into a lot of detail, because it’s clear early on that she isn’t going to add anything of value to my treatment plan. First, she asks me why I want a port. I explain that it isn’t a want, that it’s just a necessity at this point. I tell her about the 2 IVs I’m supposed to be getting per week at my nutritionist’s office, and how I can’t always schedule them because of my veins. If I have any lab work, or infusions, during a week, I can’t schedule the nutritional IVs. It was also a concern for IVIG because, again, I only have 2 decent veins in my hands, and I was having IVIG two days in a row. They thought about leaving the IV in place, but I wasn’t comfortable with it given the placement on the thumb of my dominant hand.
Not only does she not hop onboard the surgical port train, she immediately makes it clear she’s not even at the right damn station.
She tells me that there is no point in getting a port because you can only do IVIG for six months. This was something she had stated during a prior appointment, but that I had already corrected her on. She began telling me the same thing she had previously, that IVIG is like Cytoxan, and you cannot do chemotherapy for more than the six month period at the doses I’m receiving. Again, I tell her that IVIG is not chemotherapy, and that patients at my IV clinic have been doing it for years, decades even. After telling me it’s not safe beyond six months…she then tells me that perhaps we can do 12-14 months, as she read a journal article where they had treated Behcet’s patients for around that period of time.
So…were you lying when you said it wasn’t safe or possible to treat a patient for longer than six months, or are you just trying to see me as little as possible?
Her plan of treatment is for me to do IVIG 3 days in a row next month, and 4 days in a row the month after that. It feels like a lot, but unlike the NP, I won’t pretend I know how many days in a row is normal for something I’m not familiar with (the IVIG infusions). Hearing her plan only made me more angry. I am struggling with IV access for two days in a row, now we’re talking about 3-4 days? She wants to do IVIG for 6 months, but could accept longer, but no longer than 12 months, at which point her suggestion is that I change back over to heavy oral immune suppressing drugs as well as steroids.
Basically, instead of continuing a treatment that boosts my immune system, and that we know actually works thus far…we’re going to get me to a point where I’m doing really well, then stop treatment, and go back to the drugs we know I don’t handle well at all. Really fantastic plan…
She kept talking about how she “read” that a lot of Behcet’s patients have GI issues, and that they tolerate oral medication therapy. After seeing me twice, she thinks she can just treat me based on a couple journal articles. I have extensive GI issues, including gastritis and gastroparesis. Both ease up slightly when my Behcet’s is in check, but they never go away. I have almost no blood flow through my celiac artery, which causes me issues. Sure, we could get my Behcet’s into check with IVIG…but stopping therapy is only going to cause my Behcet’s to act up, especially if we’re giving me more drugs orally at that point in time.
It was extremely frustrating to deal with a medical professional who clearly didn’t want to have me as a patient. I love my rheumatologist, absolutely love her, and I hate to be critical of someone she clearly trusts on a professional level…but the NP is just not qualified to be in charge of patients who don’t have extremely common ailments. She also doesn’t handle patients knowing more than her well at all. I don’t expect all of my doctors or nurses to know what Behcet’s is. I do expect doctors and nurses to lean on me for information if they are unsure. For this NP to dismiss my explanation of what IVIG was, is infuriating.
The more I think about how she talked to me about the steroid dose pack, the more angry I get, too. At the time I had dismissed it as a clerical error, but looking back even if it had been, she handled it all wrong. Accusing a patient of lying to get another steroid pack? Which, by the way, I hate steroids…she’s the one who is talking about putting me on some amount of oral steroids indefinitely!
I’ve debated emailing my doctor but I’ll wait until she’s back from maternity leave. I know I’m going to end up with a jugular line the next time I have my infusions, which absolutely sucks, but there isn’t anything I can do about it. Maybe then the doctors who can refer me to surgery, will refer me to surgery. With everything going on, it’s hard to have the medical professionals I should be trusting, become the enemy.