Tuesday, June 4, 2013

a good patient

I'm kind of a good girl, a rule follower, an overachiever. Besides a rough patch in junior high, I have always worked hard to be a good student, a good friend, a good employee, a good wife, a good mom. But lately, another role has joined the list.

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?

Hmmm...

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.

Eat:
butter, cream, yogurt, cottage cheese, ice cream and milk (make sure they're all FULL FAT)
wild rice
quinoa
steal-cut oats
black beans
lentils
fish
grass-fed beef
avocados
spinach
kale
broccoli
brussel sprouts
12-16 oz protein/day
nuts
olives
coconut oil
olive oil
almond butter
eggs
sweet potatoes

Don't eat:
soy
protein bars
lowfat anything
frozen yogurt
canola oil and other refined oils
sugars
trans fats
soda
pasta
cereals
cereal bars

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.



55 comments:

  1. That's pretty crazy that you haven't seen your doctor in almost a year. I mean, really. What about switching doctors? I don't see my doctor all that often, but we consulted with him after three months of IUI, and I saw him for my trial transfer. I just don't get why we have such different experiences unless I am the "bad" patient and only know what I know. I mean, I have nothing else to compare the clinic to. But I can say, I do like my doctor. Do you think switching doctors would be an option?

    I do love this idea of what makes a good patient. I for one, am definitely hands off. Maybe that isn't a good thing. But I don't look into alternative medicine, although I think about doing a one time acupuncture for my transfer. I'm sure I will be calling my clinic for questions about my meds. But as far as diet, or doing certain things, I think it can help to a point, but really, taking certain supplements and exercising a certain way isn't going to help or harm. I feel like I would just completely stress myself out. :(

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    1. Thanks for the great comment, Risa! Good thought about switching doctors. I have thought about it but I just don't know which one I'd pick. Maybe we'll have a consult with Dr. C and depending on how that goes, make a decision about keeping him or switching.

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    2. I only have one doc to go off of, but I do like mine a lot. He has this "everything will be ok" presence.

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  2. i think i am usually a confused patient. and i always get angry at myself after for never saying what i want or asking the questions i have or stating my frustration or what have you
    .... i wonder if we have the same dr C. ?!
    i am really hoping you get pregnant again!

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    1. I usually try to keep a list of questions on my phone, and that helps quite a bit. The thing is - lately, I don't feel like I have many questions. I'm just sort of going through the motions.

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  3. I hate that your doctor and protocol add so much stress to an already stressful situation! Ugh! I think getting your records would be a good idea, even if just so that you can do some better research on your own. I don't have any of my own records/numbers either and it frustrates me that I don't know what they are!! My dr is usually just like "your such-and-such was high/low/normal" and doesn't use the numbers. I'm sure I could get them if I asked, I just never think about it. But then my husband's male IF doctor gives us ALLLLLLL the nitty-gritty numbers and percentages, and I write them all down, and that is SO much more helpful!! Also...that bruise looks awful! Props to you for sticking with the shots when they make you look/feel like that!!

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    1. That's cool that your husband's doctor gives you lots of details. How helpful! Also, I requested my records today! Thanks for the nudge!

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    2. Girl!! What is your email address? You leave the best comments and I want to be able to respond to you!! shoot me an email- mattyerika AT gmail DOT com

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  4. This is a great post Em! I think it's a super fine line between advocating for yourself (respectfully) and becomeing THAT patient. I think I fail a lot. So I try to do other things to make them like me, like send thank you cards, and make their life easier by keeping EXCELLENT records, ect.

    As far as your questions:

    -I'd definitely call for either a phone consult or an in-person consultation. But have questions ready. Think long term. If you don't have questions about THIS cycle (amazing), what about changing something in 3 months? What about next steps after X# of tries? Don't assume your doctor will sit up at night thinking about you, certainly after a year. Stay conected!

    -Yes, get your file. For sure. The lab work may be in a foreign language, but the notes will be plain English. It will probably spur more questions too.

    -I'm not sciencey, at all, but I think the most important think you can learn is about YOUR cycle. Then when things change or something doesn't sound right, you have the evidence to back it up. I have a notebook of all of my medical records, all of my reciepts, all of my Fertility Freind charts, etc. My doctor loves it. It's not science, it's organization, but it makes our converstations more efficient and accurate.

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    1. My appointment today was actually really helpful. The nurse was great and answered a bunch of questions with really useful answers. I was so thankful for her.

      The hard thing about learning about my cycle is that I don't really have one. I'm totally anovulatory so there's really nothing to monitor. But I suppose it doesn't hurt to monitor anyways.

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  5. I think that a "good patient" is someone that advocates for themselves. They may not know all of the medical lingo or the stats, but if something feels wrong to them, then they speak up.

    I think that it would be best for you and your husband to sit down together and talk about what feels right / what doesn't feel right with your treatment and decide if these things can be talked through with Dr. C over the phone or in person. I agree with Amanda, I would request your file so that you can look over it and ask any questions.

    I don't have any experience with an RE (I'm still seeing my OB as of right now,) but from what I've read from other ladies' blogs, REs seem to be extremely busy with many patients. Dr. C may not remember you from a year ago, so if you feel like you're not getting the treatment that you deserve (and are shelling out the big bucks for!) then you should speak up.

    I think there's a fine line between advocating for yourself and being a pain. Talk to Dr. C respectfully and explain that you understand he's busy and you respect his medical opinion, but you're just not happy with your treatment. I think that as a consumer of a product (his time and knowledge,) you should be happy with what you're receiving. Of course, he can't get you pregnant overnight, but you should feel like you're being heard and your opinion equally respected.

    This is just my two cents. I think that by worrying if you're doing everything right is a sign that you're a good patient. You're not just sitting on the sidelines waiting for everything to fall into place, you're active in your medical care.

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    1. Thanks so much for the wise words, Aislinn! You're right about all of this stuff.

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  6. You've inspired me to write a post about the same topic, but I don't have the time today or the rest of the week. So, I wanted to comment on yours while I do have time. To answer your questions:

    How would you describe a good patient? IN SHORT, I THINK A GOOD PATIENT IS AN ADVOCATE FOR THEMSELVES, BUT ALSO FOLLOWS DR'S ORDERS. THEY ASK QUESTIONS, BUT THEY RESPECT THEIR DR. I THINK A GOOD PATIENT TRUSTS THEIR DR, BUT THEY DO THEIR OWN RESEARCH AND DON'T LEAVE IT ALL IN THE DR'S HANDS.

    What would you do about the lack of contact with Dr. C if you were in my shoes? I'VE LEARNED I'M IN THE MINORITY HERE, I SEE MY RE AT EVERY APPT. HE DOES EVERYTHING HIMSELF, IF IT'S ONE OF HIS FEW DAYS OFF, I'M TOLD AHEAD OF TIME AND I CAN PICK FROM ONE OF THE OTHER TWO RE'S TO SEE. WHEN THE NURSE CALLS ME ON THE PHONE, OFTEN TIMES, MY RE GETS ON THE LINE AS WELL JUST TO DISCUSS THINGS. I THINK THIS IS EXTREMELY IMPORTANT. I KNOW I WOULDN'T LIKE IT IF I BARELY SAW OR SPOKE TO HIM. AS FOR YOU, MY ADVICE IS TO KEEP A NOTE ON YOUR PHONE OR PAPER OF QUESTIONS THAT YOU THINK OF EVERYDAY. WHATEVER THEY MAY BE. ONCE YOU THINK YOU HAVE ENOUGH, CALL HIM!

    Have you ever requested your complete file, and if so, was it helpful?I HAVEN'T DONE THIS, BUT IN YOUR CASE, WITH LITTLE RE INTERACTION, I WOULD THINK IT WOULD BE HELPFUL. GO FOR IT!

    Do you have any stories about times you felt like a good patient or a not-so-good patient? I'M A GOOD PATIENT AS I FOLLOW ALL THE RULES. I TRY TO EAT HEALTY, EXERCISE JUST THE RIGHT AMOUNT, ETC. BUT, I'M ALSO A QUESTION ASKER. I ASK ALL MY QUESTIONS, I QUESTION EVERYTHING. I'M SURE THAT CAN GET ANNOYING.

    If you're smart about the science of infertility, what should be at the top of my "to learn about" list? I'M NO HELP HERE LOL

    If you're into complementary medicine, what supplements or treatments would you recommend? I'M WITH YOU HERE. I'VE TRIED IT ALL. FOR ME (AND MAYBE YOU TOO) I FIND IT DIFFICULT AND MORE STRESSFUL TO ADD TOO MUCH OF THIS IN. SECONDARY INFERTILITY IS HARD IN THIS SENSE BECAUSE, I'M BLESSED WITH A CHILD ALREADY, AND TOO MANY APPTS CAUSE TOO MUCH STRESS. I RECOMMEND DOING WHAT'S EASY AND CHEAP. EAT GOOD, EXERCISE A LITTLE, TRY TO DO ANYTHING THAT REDUCES STRESS AND MAKES YOU HAPPY.

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    1. Thanks so much for taking the time to comment here even though you're going to do your own post! Looking forward to reading it. And you're right about the fact that adding appointments adds stress, especially when you add childcare into the mix.

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  7. Hi Emily!

    I just wanted to give my perspective from the other side of things. I work for a doctor who mostly treats people for chronic issues, and we're on the holistic side of things as well.

    You really have to be your own advocate no matter what. Some doctors take home files and worry and pray over tough cases but that's not the norm. It's ok to be a "high maintenance" patient if you're super sweet (that's you). We have many high maintenance cases right now and the only ones that stress us out are the ones that just assume they are the only patient we have. I don't mind all the extra work if they are nice to me (yes, I will take compliments shamelessly!).

    I would highly recommend getting copies of everything you do at all your doctors and keeping it in a notebook you bring to every appointment. You want to present yourself as being very organized to your doctors so they will take you just as seriously (kind of like going to a hair appointment with your hair already done so they do a good job).

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    1. So fun to see you commenting here, Susanna! Thanks for the great advice.

      And also, I'd never thought about that hair thing, but that's a really wise idea! I'm definitely doing that from now on. (-:

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  8. What I great conversation! I've composed a reply but it won't be up till Friday:

    http://donatinghope.blogspot.com/2013/06/cd9-good-patient.html

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  9. First off, great post Emily!! There's a lot to think about here.

    Honestly, I think what makes a good patient is someone who feels they have a trusting relationship with their care providers. It means being informed enough to advocate for care but also to be on the level with everyone involved so that you can work together towards the final goal. Because of this, I don't believe that good medical care requires only one party in this exchange. It requires having a physician who is willing to take the time to answer questions and give explanations for treatment course, it requires having nurses and MAs who are sensitive to concerns and make the patient feel like they are being taken seriously. And it requires a patient who is not only informed but also respectful of the care team, who's comes prepared to appointments but is also mindful that everyone in the situation is human and deserves to be treated with respect.

    I'll be honest, for many people this is a hard thing to do. We are taught from an early age that doctors are gods who know far more than we ever will and that we should just trust them. And in the fact that as women we are trained not to question/upset anyone and the fact that treating infertility/RPL is such a traumatic situation, and you've put together the perfect mix for patients to feel like they should be silent and just go with the flow.

    Thing is, this rarely works. I've seen to many physicians vent about patients who didn't speak up about concerns or provide information that could change treatment plans because the patient assumed the doctor knew everything. In addition, not every doctor is a good fit for the patient. And that's something that's incredibly important as without it you won't be able to foster that relationship.

    So, here are my thoughts: First off, you most certainly should be speaking with your RE about your treatment. Even if it doesn't seem relevant, he should be giving you feedback on each cycle. Yes, I know those appointments are expensive and seem like you're bother them, but I've learned that if it feels like I'm bothering someone, it means I need to get into contact with them. Before the appointment, compose of list of questions. It sounds like you've been on top of your PCOS, but it would be worthwhile to ask what his thoughts are and how these recent treatments are being impacted by this disease. Bring a pad of paper with you to the appointment, as it will allow you to write down what is being said If at the end of the appointment (or while scheduling) you get the vibe that the care team really isn't interested in your case, I would seriously consider finding a new RE. After all, you guys should be working together, not dragging them along.

    Regarding medical records, I did request mine for my IVF/FET cycles and used them later for my second opinion. Everything went into a 3-ring binder along with some articles I had found on Pubmed about my situation (Google Scholar works well for searching too). That binder also contained a pad of paper as well as other information about my treatment protocol, so it went with me to each of my appointments. It actually became very handy in the middle as my nurse was incredibly forgetful and flighty, so it allowed me to be on top of things and remind her of when I needed appointments schedule/drugs ordered.

    Finally, though I'm a numbers person, I know a lot of people are not. This site I found incredibly useful: http://www.fertilityplus.com/faq/hormonelevels.html
    Regardless, keep a record but don't fret over exact numbers. I've seen too many people drive themselves insane with numbers, reading too much into them. Remember there are ranges, but even then some people fall outside of them. The big thing is the trend.

    Wishing you all the best as you continue down this path.

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    1. Wow! What a blessing this comment was! I so appreciate all of the time and energy you put into composing it! There's a lot of great stuff here. Thanks again.

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  10. *How would you describe a good patient? -- Be your own best advocate!!! REs know a lot about IF, but they don't know everything about YOU. Make sure you tell them all the details you can - and that you know the appropriate questions to ask about options moving forward.

    *What would you do about the lack of contact with Dr. C if you were in my shoes? -- As it's been a full year, I'd ask for a consult. OR, if you have your nurse's direct email like I did, ask HER if it's standard to get an annual check in from the RE (in a politely insistent kind of way of asking). I would think he could do that for you.

    *Have you ever requested your complete file, and if so, was it helpful? -- I asked for mine after the fact, just for my records. It was honestly helpful to compare numbers from then to numbers from my pregnancy this time - and it's nice to have the file already if you do end up switching practices. FYI - most docs will charge for YOU to get a copy - but they'll release a copy to another doctor's office (like your PCP) for free.

    *If you're into complementary medicine, what supplements or treatments would you recommend? - Do acupuncture. Eat lamb. Pick just a few eastern treatments to try and stick to them so you don't get overwhelmed.

    *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? -- Those who come educated about their condition with good questions about treatments/etc. It drives the docs at my practice nuts when ppl fail to mention all of their symptoms/questions at the appointment!

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    1. I was really glad to find out that I can get a copy of my record for free. It just felt like a little sign that they were supportive of me engaging in my treatment.

      Lamb, huh? I don't think I've ever eaten it but I'll have to add it to the grocery list! (-:

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  11. Love this post!!! I am always afraid of being "that" patient. I think a good patient does advocate for themselves and is aware of what different numbers/tests mean and how the results might affect their cycle/fertility/chance of conceiving. Heck, I even go into my GP with questions/articles/requests.

    That being said, I went for second AND third opinions during our quest to conceive #1 and #2. In the end, we even flew out to Colorado for a consult with the big guns because I wanted to have answers and I knew they were the place to get them. They were open to answering ALL of my questions and the doc never once made me feel silly for asking about different protocols, medications, or tests. You should trust your doctor and feel like you can go to them when you want more information/answers/medical advice.

    I say, don't be afraid to ask whatever questions you have and push for the answers you want!!

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    1. We had a phone consult scheduled with CCRM but I actually ended up canceling it because the more I researched them, the more I realized we couldn't afford to go there. I didn't want to waste the doctor's time if I know we wouldn't be having him treat us.

      And you're totally right about the fear of being "that patient." I really feel that too.

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  12. I'm so similar to you, the beginning of your post exactly describes me. Trying to be the perfect patient, like it's an art or subject I can study and thus result in the right outcome. That being said I think it's always important to advocate for yourself, which is sounds like you're doing. As you know our RE is in another state and after our last chemical pregnancy we did a phone consult with her in which she answered our questions and discussed next steps. We found it to be very beneficial and encouraging. Maybe you could do something like this with your RE?

    In the very beginning before our first IVF I did acupuncture for a little while. I haven't in a long time though, honestly I just don't know if it's going to make a difference, we already have to pay for so much to conceive so it's an added cost and the time factor also makes it a challenge for me.

    Hoping things move forward smoothly for you dear friend!

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    1. Yes, it's hard to know whether the added cost of acupuncture (or anything else for that matter) is worth the benefit. I also did acupuncture before IVF. That cycle was successful, but we'll never know whether the acupuncture played a role.

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  13. I get confused with all of the lingo too. Some I have learned most of the number's I haven't because it's just too much for my brain lol Plus we haven't dug that deep into the IF treatment yet due to insurance NOT covering it...now THAT I could go on and on about! lol I feel like if we hit the 2 year mark then we will have to step it up somehow. I tell you though I just mostly have to rely on my faith because no one else holds our plan like God does :)

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    1. So sorry about the lack of insurance coverage. It's so disappointing, isn't it! Well, to say the least! So glad your faith has remained strong throughout this tough time.

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  14. As a healthcare professional myself, I can say that I love working with patients who are really open-minded and willing to undergo the tests and at least try the therpeutic interventions that I recommend. They ask thoughtful questions, and keep an open dialogue with me, without being abrasive, demanding or outright abusive. I have no problem being challenged, but have serious issues with those who challenge me in a rude way. I have no issues with patients consulting Dr. Google, or books, or whatever other 'authorities' they choose to consult, as long as they understand that not everything they read should be taken as gospel, and some of it is just false. I understand that the people who are most invested in my patients' well-being are my patients themselves, and I actually appreciate the give and take that often comes with a more health-conscious and informed public.

    BUT... not all healthcare professionals are like me. There are many, MANY doctors out there who do not want to be challenged or questioned, and will take serious offence when it does happen. This type of healthcare provider would define what constitutes a good patient very differently than I do. They prefer patients who have done no reasearch on their condition, and just do as they are told. Not very realistic in the information age, in my opinion. They must be very frustrated people.

    So... that was a long-winded way of saying that what defines a good patient probably depends which type of healthcare professional you ask. But, having been a fertility patient myself for many years, I can say that the most important thing from my perspective was that I did whatever needed to be done so that, when the end of my journey finally arrived, no matter what the outcome, I could look in the mirror and say that I did everything I could. I needed to be able to look back and feel no regret. Was I always the type of patient that I, personally, would prefer to deal with? Hell no! I was occasionally rather demanding, I yelled a few times, and definitely made a scene or two. And I have no regrets, because someday, I will be at peace, even though I never had the second child that I wanted, because I know that I tried everything that I felt might have helped. Being a good patient, from the patient perspective, is a very different animal, I discovered. I always advise everyone to fight for what you believe, because only you will have to look in the mirror ten years from now, and be OK.

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  15. I think a good patient educates themselves and isn't shy about asking the expert ALL questions they might have. While I'm kind of a science nerd and the medical jargon comes easily, there is no way I'd remember what's most important in the limited time I have with my RE....that's why I just jot down ?'s I have throughout the week(s) and take the whole list with me to the next apt. I try to use the nurse to answer most questions via email so that I can ask the really important ?'s of the RE when I have his attention.

    As for how often, I always see my RE. He does every u/s and I know he has 15 minutes allotted to each patient. I usually always take full advantage of this. If I need 30 minutes of his time, he will stay and answer them all.

    As for Eastern vs. Western, I think a combination of both is good. I've done a lot of acu, read The Infertility Cure, followed Chinese medicine pretty religiously, but in the end I feel it will be Western medicine that actually gets me pregnant and keeps me pregnant. I've just done all the right things for so long, and while I know it's helped my body, only Western medicine has gotten me pregnant (during the one month I took off of acu, go figure). All the garlic and ginger in the world isn't going to solve my blood clotting issues....but Lovenox might.

    I think a good patient will do for their fertility the things they would do for themselves anyways. I try to do things that are good for me no matter what...if I was TTC or not. Eating healthier is great for fertility, but it's good for health in general, so why not. Same with acu. It's good for you anyways, so it can't hurt. The cost does add up though, and I've suspended acu for that reason...Western medicine is more important right now.

    It's not always easy to be a trusting patient, esp. when infertility treatments don't come with a guarantee. Every time I try to rationalize some 1+2 should = 3 with my RE, he says, "You're trying to be logical about this and this science just isn't logical sometimes." Even the most experienced and well educated doctors don't always know what the body will do. Educate yourself, ask questions, but try to be understanding of the fact that no one, even the RE's, can predict the outcome on treatment. Not sure if that is what makes a good patient, but it sure helps to make a sane one.

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    1. I love everything you said about eastern and western medicine. I'm right there with you, but you explained it a lot more eloquently than I ever could have!

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  16. Hi Em! I actually just wrote about this topic on my blog! These are things that I have found helped me be a better patient. I even contacted my REs office and shared the list with my nurses and the front desk staff just to make sure I didn't miss anything. Hope you find this helpful!

    Here is the link: http://conceptionaldysfunction.com/2013/05/30/be-a-better-infertility-patient/

    I am not even in the midst of fertility treatments and I speak with my RE at least once a month! My ongoing heart issues have kept me from beginning IVF for right now, but my RE requests that I keep him in the loop with everything that is going on. I would absolutely recommend you speaking to your RE more frequently, for your peace of mind at least.

    Also, definitely get a copy of your medical records. Best thing I have ever done! Read through each page and familiarize yourself with the medical terms, it will help you better understand the treatment process and advocate for yourself if their is a treatment recommendation you don't agree with.


    Anyway, love this post! Great minds think alike!

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    1. Wow! You're RE sounds wonderful! Headed to your blog right now!

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  17. I wish I felt like a good patient. Right now I don't. I feel like I've done everything wrong. I love how you approach every topic, struggle and challenge. You are so inspiring. Just so you know. ;)

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    1. Suzanne, you are so far from a bad patient. You have done nothing wrong. But I definitely hear your struggle and grief. I'm so sorry, dear friend.

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  18. Hi Em! So, I wrote a post for you. I am not so much concise, so a comment wasn't going to cut it... To answer a couple questions I didn't in the post, I have never requested my complete file. Probably because my notebook is pretty darn close. Plus I kept all pictures of everything. So I have pictures of the inside and the outside of my uterus, which is pretty cool. I wish consults didn't cost you so much money. I would write up a plan for the information you wanted to get and bring some things you have found yourself next time you are in with your doctor. If you feel like you aren't getting good answers, is it possible to look into a second opinion? I don't know, I feel like your relationship with your RE is one of the biggest elements in this whole infertility treatment rigamarole. I feel lucky to have such a responsive team and would be very frustrated if that wasn't the case.
    Anyway, here is my post: http://mypathtomommyhood.blogspot.com/2013/06/being-good-patient-answer-for-em.html I hope it is helpful! :)

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    1. Thanks so much Jess! This is all great advice! And your post is even better! So much useful stuff in there!

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  19. I think you have to allow yourself to be open to what your doctor recommends but also do your own research. It is such a fine line. But I think being a good patient is being respectful to the staff at the clinics and remembering that they are on your side. You, your doctor and their staff are all working towards the same goal - so approach it from a team mentality. Great post!

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    1. You're so right, Jessah! Thanks for the comment.

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  20. Wow, fantastic post! Thanks for inviting us into your journey. I feel like I cannot even try to understand the depths of the thoughts and struggles with the decisions that you are thinking through. Thinking of you both on the journey!

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    1. So good to hear from you, Melissa!

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  21. Great post Em!

    Since we have not done Fertility Treatments since 2007, I am a bit out of practice. But I will do my best to answer your questions...

    To start with, I felt we had a very good relationship with our RE and had consult with him after every failed ART Cycle (which included two failed fresh IVFs and one failed IVF that was converted to IUI when my follicles weren't doing as well as our RE wanted, he didn't want to "waste" one of the four cycles covered by our HMO insurance at the time). He would make changes to our protocol each time and I often, having research options/protocols would arrive at our consults asking about specific protocols I had heard of/read about online! :) He too would tell us that every patient is different and what works for one, may not for another. One interesting thing we heard from others, as well as the nurses at our REs office, is that some people do better with FET cycles than fresh IVF. As it turned out we did get pregnant on our 4th ART cycle (our 1st FET)! We were elated! But unfortunately that baby was our Molly who ended up having a rare, severe and fatal combination of CHD. After Molly we decided not to pursue any more ART treatments/cycles. Though our insurance would have still covered that. So we never met with our RE again. It is especially bittersweet, as we learned that he died earlier this year. :(

    How would you describe a good patient?

    Someone who is informed, advocates for themselves, is patient with their doctors, but not naive, that asks good questions, keeps their own good records and doesn't rely to much on/or get freaked out by consulting "Dr. Google."

    What would you do about the lack of contact with Dr. C if you were in my shoes?

    I would at a minimum ask for a phone call and might even pony up the $200, if I could afford it, for the peace of mind of having a consult. But that is easy for me to say from my vantage point. You have to do what works and feels right for you and your family.

    Have you ever requested your complete file, and if so, was it helpful?

    No, but I think it is a great idea! I have gotten copies of some records though, over the years, which I found helpful.

    Apparently my first comment was too long! ;) So this is part one of two! :)

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    1. Here is the rest! :)

      Do you have any stories about times you felt like a good patient or a not-so-good patient?

      Probably, but I can't think of much now. One of my favorite OBGYNs (there are 5 in our practice) used to (and still does) tease me about my "binders" that I would bring to my appts. with my notes, questions and color coded spreadsheets with what happened at each appt., etc. I did the same thing when we were doing ART cycles.

      If you're smart about the science of infertility, what should be at the top of my "to learn about" list?

      I would guess protocols and the latest technology that helps patients and doctors have success. I know that so much has change and the technology has gotten so much better, in just the 6 years since we last did ART cycles.

      If you're into complementary medicine, what supplements or treatments would you recommend?

      This is interesting and something I intend to blog about sometime in the future. I have been in pelvic floor physical therapy for the past 6 months, in part as a result of the 3 c-sections and the other abdominal surgery I had to remove our interstitial ectopic pregnancy. One of the things my PT has worked on is my c-section scar area and scar tissue, as well as Visceral Manipulation of my organs. Though she won't come right out and say it, she alludes at times to the fact that some of my "issues" (miscarriages and such) may have been in part because of scar tissue. :( So depending on your history, you might want to be evaluated by a Urogynocologist and/or a Pelvic Floor Physical Therapist.

      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?

      I am not in the health-care field, but I do have a family member who is a nurse who once told me/reminded me that our doctors "work for us" and we shouldn't feel embarrassed or intimidated to ask questions and/or advocate for ourselves to get the time, attention and treatment we deserve! :)

      Wishing you the best on your journey!

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    2. Thank you so much for the great comments, Kathy! I appreciate that you put so much time into it! That pelvic floor stuff is very interesting. I'll have to ask about it.

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  22. I found you from Emily's blog (eatloveprocreate) and wanted to chime in. I think a good patient is someone who pays their bills. After that, everything you ask, research, and insist on is just getting your money's worth. Best of luck with your journey for baby #2! And I suspect you live in my home state, so that makes me like you even more! :)

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    1. Thanks so much for joining the conversation, Lisa! Glad to have you here. Headed over to your blog right now!

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  23. Not sure if I could offer anything but hope. But HOPE is huge so please embrace it.
    I haven't been on this train in quite some time(almost 15 years)..having got off after 2 rounds of clomid. You my friend are a good patient. The bravery and courage you show in the NOW of this particularly challenging faith struggle, makes it so. I think a whole foods diet is the way to go...and limiting carbs seems to improve just about any ailment (I'm working on that one myself). Besides that, I think finding a way to balance your emotions is key. Infertility stress is real and finding a way to walk through it sane is so important. In the end, my journey was a faith walk so I'd encourage you to stay focused on your relationship with Christ. Know that He is gracing you to walk this path and stay hopeful...no matter what. Every problem I had while ttc was present when I conceived the one that made it - the fibroids that I'd had removed twice and the blood clotting disorder. God said yes and after 14 years I gave birth to a son. We are always being used and your testimony at the end of this is being prepared to be shared. I will remember you in my prayers and believe with you for your miracle.

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    1. Such, such, SUCH a priceless comment. Thank you for these wise words. They really helped me put everything in perspective.

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  24. I love the idea of combining the western and alternative treatment options. But I think you have to temper it. There is the temptation to try any and everything and that just doesn't work. Be prayerful over your choices...listening to and honoring YOUR body. Ok..that's it for now. So happy I stopped by and now to find out the why's of your blog name. Enjoy the rest of your Sunday.

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    1. That's exactly it. Thanks so much, Lisha.

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  25. I have a feeling you are a pretty awesome patient. I find it strange that you haven't had contact with your RE for almost a year! Don't be afraid to call and ask questions. Be proactive. I'm definitely don't know as much as I probably should about all the meds, protocols and such either. I just take in what the doctor tells me and go from there. I ask questions when I need too.

    Wow, am I way off in the list of foods. I have to question eating butter and cream, as they are most definitely not considered a healthy fat. And oh boy, I eat about half the items in the do not eat list: protien bars, cereal, pasta (whole wheat)..... Oy. Makes me wonder if I'm doing things wrong!

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    1. I am not a dietician. I haven't even studied this stuff, but from what I've heard from dieticians/nutritionists, I am so happy to tell you that what we've been taught all along about butter and cream is totally off base! As long as it's real butter and real cream (preferably organic), it's good for you! Is it healthy to guzzle the cream or eat a whole stick of butter? Of course not, but in moderation, it's actually a really important part of our diets. Fats don't make us fat. Sugar makes us fat. So, good news! Butter and creams ARE most definitely healthy fats! (-:

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  26. I have had this post open in my reader for ages now and although I still don't know what exactly I want to say... I did want to say to you what a fantastic post this is! A very interesting topic which has obviously got me thinking for a while now.

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    1. Glad the post got you thinking! I love when posts do that to me. (-:

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  27. 3 Researches SHOW How Coconut Oil Kills Waist Fat.

    This means that you literally get rid of fat by consuming coconut fat (in addition to coconut milk, coconut cream and coconut oil).

    These 3 studies from big medical journals are sure to turn the traditional nutrition world upside down!

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