I want to be a good patient.
Really though, what does that even mean? What makes someone a good patient? What are the characteristics that increase an infertile person's chances of pregnancy while allowing her to maintain her sanity, life balance, and the respect of her medical team?
Is it positivity? Confidence? Hope? When we first started trying to conceive our second child, I was a confident patient. Maybe even overconfident. I was at a healthy weight and my PCOS felt under control. I was coming out of a fairly easy pregnancy, a blessing of a birth, and a year of nursing. Hadn't I proved to the world that I was meant for this? That all of that infertility stuff had just been a misunderstanding? I really, truly thought I could get pregnant on the first try. I felt like we'd done our time in the infertility wilderness and now it was our turn to walk down easy street. Well, after sixteen months of trying to conceive and two medicated cycles, that overconfidence turned into...underconfidence. (Just go with it.)
Lately, I tend to be more of a skeptical patient. I question whether these treatments will ever work. I question whether we'll have another child. I question whether I'm even willing to do in vitro fertilization again. I wonder about our clinic, our doctor, and especially our lab. I wonder if books, websites, alternative treatments and other resources are just gimmicks. Can a good patient be skeptical? Negative? Doubting?
A good infertility patient has to be knowledgeable, right? She has to really know her stuff - drugs, diagnoses, tests, acronyms, clinic statistics, all of it. I often feel self conscious about my level of knowledge about my own body and infertility in general. I've read lots of books and I've done research online, but I'm not a science/numbers person, so I have a hard time remembering lab values, hormone levels, all of that stuff. I honestly can't even remember how many eggs successfully fertilized during our IVF cycle. I greatly admire my fellow bloggers who are rockstars when it comes to the science behind the drugs and procedures. I want to be more like them. They're good patients.
|being a good patient by wearing this goofy outfit|
I think a good patient probably needs to obey doctor's orders, but maybe compliance has a dark side too. I get nervous about coming off as annoying or demanding, especially since infertility clinic staff members often seem kind of jaded...like they expect us to be anxious, crazy, angry and pushy before we even open our mouths. I don't want to call my clinic all the time, asking about this drug or that test. But it's also hard to sit down on the infertility treatment conveyer belt and stay silent. I want to be the type of patient that advocates for myself. That's why I insisted on trying femara instead of continuing clomid (excellent choice) and also asked to be put on metformin (no clue whether it's helping).
But I'd like to be doing more. It all goes back to the knowledge thing. I just don't know what questions to ask or what protocols bring to the table. Here's a question I have for you - how much contact do you have with your reproductive endocrinologist? We haven't seen Dr. C since June of 2012 when we had a consult. We weren't even ready to start medicated cycles at that point. We just wanted a plan in place so that we could prepare financially. Not only have we not seen Dr. C for a year; we haven't even spoken with him since July of last year when we were starting the embryo adoption process.
We could ask for a consult with Dr. C at any time. But we'd have to pay upwards of $200 for it, and the truth is, I don't even know what we would ask him. I could also request a call from Dr. C, but I just imagine myself saying something like, "So you're sure we're doing the right thing with this femara/trigger/insemination protocol?" And he'd say, "Yep." And that would be it.
I'm also considering asking for copies of my medical records so that I can study my body, my condition, etc. The thing is - I'm pretty sure my hormone levels have always been within normal ranges. Well, I guess there was that one time when my prolactin was high and a nurse asked if I was engaging in excessive nipple stimulation. Um...no. And excessive? What does that even mean? But anyways, it may be helpful for me to use my medical record as some sort of personalized textbook. Both my husband and my mom are nurses, so they could probably help decode some of the medical jargon.
I think another thing that keeps me silent on the infertility conveyer belt is the fact that when I've asked questions in the past, I've often been given really lame answers. I'll ask about diet, exercise, guys keeping cell phones in their pockets, caffeine, vitamins, complementary medicine...and 90% of the time, I get a wishy-washy, often patronizing responses.
"There's no evidence to support or refute that."
"If _______ helped, we'd recommend it to all of our patients."
"Just keep doing what you're doing."
And my ultimate favorite - "It depends on the person." I want to say, "Well, we are talking about ME here. Can you answer the question based on ME? And if you can't, just make it up. Whatever."
On Sunday, I even called into the "Gyno Show" on the radio and asked Dr. So-and-so what infertile people should be eating. I asked if there were any good books or plans for us to follow. His answer? "Each individual should eat whatever she needs to eat in order to stay healthy."
Quite the aha moment.
When I pushed a little bit, he recommended a Mediterranean diet and suggested cutting carbs, so at least I got something out of him. And off the air, the producer recommended I listen to another show, called Dishing Up Nutrition. The whole show was focused on infertility and diet, so I appreciated her sharing that with me. And it was also kind of cool to be on the radio talking about infertility.
|being a good patient by braving the twice-daily shots for eight months|
I'll venture to say that good infertility patients probably do a combo of Eastern and Western medicine. They're probably doing acupuncture, taking supplements and herbs, and getting Mayan abdominal massages. I used to do this stuff. I got acupuncture. I took a few herbs. I saw a naturopathic healer. But it is so expensive, and since I'm not willing to give up my meds, ultrasounds and inseminations...western medicine wins the money war. Also, sometimes it seems like once you open the door to complementary medicine, it's hard to stop. There's always another supplement to take, another specialist to see, another yoga position to try. It's exhausting. It's too much....which is ironic because with western medicine, it feels like it's never enough.
So again...what makes a good patient? Is it fortitude? Serenity? Being on time for appointments? Cutting out sweets? Mental toughness? A strong support system? Unshakeable faith? A willingness to take risks? Lots of money? Good veins?
Usually my posts are more about flinging my thoughts into the universe than about getting something back, but this time, I would love feedback.
How would you describe a good patient?
What would you do about the lack of contact with Dr. C if you were in my shoes?
Have you ever requested your complete file, and if so, was it helpful?
Do you have any stories about times you felt like a good patient or a not-so-good patient?
If you're smart about the science of infertility, what should be at the top of my "to learn about" list?
If you're into complementary medicine, what supplements or treatments would you recommend?
Do those of you in the health-care field have any thoughts about what characteristics make patients (of any type, not just infertility) more successful?
If your comment starts to get long, feel free to abandon ship and create your own post on this theme, then comment here with a link to your post. I have been thinking about this stuff so much lately and would just LOVE to hear what you wise, dear people have to say. Thanks in advance for joining the conversation!
Quick update: Today was a good day. I started by listening to the nutrition radio show I mentioned above. It was actually really helpful. Listen to it if you have time. And if you don't, maybe the quick little lists I made while listening will do the trick.
butter, cream, yogurt, cottage cheese, ice cream and milk (make sure they're all FULL FAT)
12-16 oz protein/day
canola oil and other refined oils
I also had a baseline ultrasound today, and while I was there, I requested a copy of my chart. I'm looking forward to diving into it and seeing what I can find out. The nurse who attended my ultrasound was wonderful. She thought it was a great idea to get a copy of my chart, and she answered several other questions as well. She also told me some specific things Dr. C had mentioned about this cycle, so even though I didn't connect with him directly, it was good to hear from him through her. It looks like we will likely reconvene with him after this cycle or the next...but I'm really hoping there isn't a next cycle.