Follow me on the crazy, hopeful, discouraging, funny, and ultimately successful (one way or another) path to parenthood while facing infertility.

Monday, June 10, 2013

Being a "Good Patient" -- An Answer for Em

Em over at Teach Me To Braid wrote a post that really spoke to me. She asked the question, "What makes a good infertility patient?" along with a slew of other questions (How often do you see your RE? What are good resources to know more about the process? Do you get answers to your questions? and more...), and asked for feedback. I'm taking her up on the separate post because I'm pretty sure my comment on this would be way too long to be considered just a comment.

I would consider myself a good patient, but that is a definition that I believe has evolved and changed drastically over the years. And when I say "good patient," I mean good for me and my peace of mind and wellbeing, not necessarily an "easy patient." I ask a lot of questions. I am stubborn and persistent. I have a less-than-reverential sense of humor. But I am also kind, and polite, and I genuinely love my medical team.

In the beginning, I was a total good patient to the extreme. I had a notebook that I carted to every appointment and diligently wrote down all values, all follicle sizes, all endometrial lining thicknesses. I touched the ultrasound machine mouse ball to get the screen back up if it went to the screensaver before I could both get my pants back on and write down all the numbers. I made lists of questions, and made sure to get the consultation appointments to ask these questions. Usually those dreadful "failed IVF" consultations. Caveat: my insurance covers consultation appointments and post-IVF consults were included in the ghastly fee, so it never cost me more than $15 to have these chats. Like Em, I did all the acupuncture and herbs and Mayan massage and supplements, in the beginning. I looked up good luck charms and rituals and fertility deities and all kinds of ways to bring good juju into my household. Red candles were to be burned all the way, and if you had to put it out, it must be snuffed, not blown. My snuffer was a turtle, because turtles are some kind of fertility symbol somewhere. (I'm pretty sure you can find a case for a freaking dish sponge to be a fertility symbol if you look hard enough.) In the very beginning, it was a way for me to gain control. In the beginning.

Then I spiraled madly out of control, clutching my notebook like a lifeline and obsessively doing my own data analysis of my baseline estrogen levels before the Follistim and Menopur kicked in. I started looking for patterns that maybe my doctors were overlooking, because something wasn't right. I made T-charts and line graphs and drove myself nuts. I even came out of anesthesia once, delirious and loopy, demanding that my husband get me my F-ing notebook. I am a sailor coming out of anethesia. (Sadly, Bryce has this all on tape, because I wanted to see what it looked like to come out of anesthesia because he always told me stories of being wildly inappropriate and silly and repeating the same things over and over again, but I wanted to see for myself. And then I couldn't UN-see.) If a candle got blown instead of snuffed I freaked out--what if this messed with our juju? I wore orange underwear but did laundry every 4 days so that there was NO WAY I could run out, because running out would be BAD. I overdid being Fertility Queen and became Fertility Lunatic.

There is a balance between these things. Some of what I did has stuck, because it a) gives me what I now know is a totally false but reassuring sense of control, b) makes me happy, and c) I know if I forget something I will be ok, and whether or not I have smudged my house has very little to do with how pregnant (or not) I may be. Obsessive charting? Not necessary. Being aware of my protocol and resulting numbers? Helpful. I've approached the egg donor cycle totally differently. I have done very little research (at least not obsessive research). I own ONE book on egg donation IVF, whereas I own probably FIFTEEN books about the physicality and emotionality of infertility in general. I haven't even finished it. I have accepted that this is so far out of my control that I need to just let go a bit. Understand the process, but don't micromanage it. I am so much more relaxed.

Here are the things I truly think make a difference in my treatment, as a patient:

- Asking questions. No question is repetitive or silly. Sometimes I just need to hear a voice on the other end of the line who has some authority about this fertility treatment telling me something is ok or answering a question, even if I already know the answer. I need communication. To answer Em's question, I speak with the nursing staff regularly, and will leave messages for my doctor when I need a bigger answer. We have consults before treatment and following a disaster. I still bring questions, but I try to listen more without trying to drive the show more. It helps. Sometimes, too, you don't get a good answer (which means it was too vague or noncommittal or not what you wanted to hear). Check out other resources in that case, and come back to your doc with something more concrete to ask about. Or bounce ideas off of support groups, email groups, therapists, and the internet. I am wary of the internet, but it can really help you find some interesting vetted studies that help guide better questions.

- Advocating for myself. Sometimes those questions are a way to reach out and feel connected to a somewhat removed process. And sometimes I really want to ask about other treatments, fears I have about certain activities/products/foods/etc, research I've found from other blogs or articles. I have a really good relationship with my RE, and have been lucky to have had TWO REs who are both very good listeners and open to feedback and questions and other ideas. A good, non-sterile relationship with your RE is invaluable. Recently I advocated because I keep hearing about endometrial biopsy as a pre-transfer procedure to increase implantation rates, and valium at transfer to help relax uterine muscles (and the mother ship holistically, quite frankly). I asked about both--my doctor isn't for the endometrial biopsy but was totally open to the valium. There! I changed something about my protocol! Maybe it will be that tiny thing that makes the difference, but it wouldn't have happened if I didn't ask and advocate for why I thought it might be helpful. Ultimately I then take my doc's expertise (it's why I pay out those big bucks, I guess!), but I wanted reasoning and some kind of change and I got it.

- Everything in moderation. I am sure that acupuncture has fabulous benefits. I was going multiple times per week, for over an hour each time, and at $70 per session. That adds up fast, and like Em, I had to decide where to put my money. Herbs I never really was 100% behind, but I tried them, and (like everything else) they did not change my results. Mayan massage was lovely, but again expensive and time consuming, and I wasn't sure that it was bringing me closer to my goal. I used to do all of these things religiously, and then I decided...not to. I go for a regular massage every 2 weeks for stress relief, and because it has NOTHING to do with fertility. Acupuncture and Maya massage became less relaxing when I was always focusing on my uterus, my ovaries, my reproductive function that was failing me over and over and over again. Regular massage, at a place that does not associate itself with fertility at all, has proven super relaxing. Which, apparently, is really good for fertility (as much as I want to slug the "just relax" people, stress does not improve your chances). I am also a little crazy about chemicals--I replaced all my plastic tupperware with glass, and try to microwave as infrequently as possible. All my cleaning products are "green." I haven't had a soda in a really, really long time. But, sometimes a girl wants a cheeseburger and french fries. And those french fries are not going to make me more or less pregnant. So, moderation. Same goes with drinking. When I am in a cycle, on medication, I do not drink at all. Before then, especially with my eggs out of the picture, what's some wine or margaritas on the weekends? It goes with stress relief and enjoying something with my husband. We're not guzzlers, we're tasters and enjoyers and pair-ers and appreciators of good wine, and so to cut that out completely would be bad. So, moderation.

- Eat good stuff. I try to eat fresh, eat organic, and eat as little processed food as possible. I do need me some chocolate from time to time, but that falls under moderation. I try to eat lots of fruits and veggies. I try to eat whole grains (tough when you're gluten free and not by choice). I eat nuts and lean protein. My beef is grass fed, my chicken organic. My grocery bill huge. The diet thing is so hard, because you can find studies to support all kinds of things. Eastern medicine often recommends gluten and dairy free. Well, gluten is no problem as it makes me very ill. But dairy? Western medicine says full fat dairy is great for fertility. I have seen as many studies for dairy as I have against it. And guess what? I love my cheese. And my yogurt. So, I keep the dairy. I have had a hard time getting medical answers to perfect fertility foods, but have found answers in blogs, and websites, and books. But when you read between the lines, really eating foods high in folic acid, iron, protein, and fiber and low in sugar and processed stuff is helpful for your body, which is helpful for conceiving. And honestly, by the time you are into all this high-tech ART stuff, is a yogurt going to make or break you? I doubt it. So I try to eat as good a diet as possible and try not to sweat all the conflicting information out there.

- Some supplements I feel are helpful (understanding I am not a medical or nutritional professional in any way). One thing that I swear up and down DID make a measurable difference was wheatgrass. I had the best egg quality and number of embryos that made it to freeze on my last fresh IVF cycle. During stimming in that cycle I had a shot of wheatgrass, freshly squoze, every single day. That was the only big change that I made, and I swear it made for a better retrieval. I am now down to a prenatal (I go natural, expensive but it makes me feel better. Pure Encapsulations is the brand I buy), and fish oil. The lemon-flavored kind because I don't have fish burps and when I do they are lemony. Again, I swear that the fish oil makes a difference in lining thickness and bloodflow. It was one of the acupuncture suggestions that stuck. I believe in fish oil but have no studies to show you to prove it, just my own personal experience.

- Be informed. I know people who have been successful at IVF and went to all their appointments and did all their injections but had no clue what each medication did or how everything worked. That is so not me. I need to know everything about the process. I need to research, I need to be able to explain all this to anyone and not feel like everyone is speaking a language I can't understand around me in the clinic. So I read books and looked up websites and wrote the information down in my little notebook (which isn't as ubiquitous as it once was). I feel with complete confidence that I know my shit about IVF and my personal brand of infertility. I actually put this in action today when explaining how retrieval works to teachers I work with. I drew a little diagram on the blackboard and illustrated how retrieval works. Then, to be ha-ha funny, I erased the right fallopian tube so that it more accurately resembled MY plumbing. Ha. Ha. Ha. I love talking about this. I love explaining this to people who want to know more (and have maybe subjected some to it who weren't all that interested but were held hostage by my enthusiasm for all things fertility treatment). Let's face it, although it's not fun to be the patient, this stuff is COOL. It's amazing all the stuff they can do. They select individual sperm, break their little tails off, and inject them right into eggs and that doesn't guarantee fertilization? What is THAT? But that is ICSI, and it's important, to me, to know this. You may not want to know the ins and outs to keep your sanity. But for me, it helps me keep my sanity to be well-versed in the processes that will make me a mommy. I feel like I can ask better questions because I am informed. I can advocate better for myself because I am informed. I am definitely a bigger pain in the ass because I am informed, but that's ok.

- Make friends with your team. I consider my medical team part of my family. When we go to our clinic, it's like meeting up with friends. Friends who explore your privates with scary ultrasound wands, but friends all the same. They will make our dreams come true. They make the calls that can change your life. They are in your corner. I am lucky to be at a place that reciprocates this feeling for me. I truly feel like the nurses and PAs and doctors are happy to see us. I think that they would be happier to see us move on from their services, but I think it makes a big difference to have such a sense of friendship from the team. It could be easy to to distance yourself or be irritable (and I know I have been irritable at times when information was frustrating) given the circumstances. But considering all of the professionals part of your team for parenting goes a really long way. This is hard if you have a really big clinic, or a really antiseptic clinic, but it to me is invaluable to have a relationship with your clinic where you feel safe and warm and part of the team, not just a patient in the dark until they tell you stuff. Super important.

- Therapy, therapy, therapy. I would be lost without my counselor. She has been there for me through every high and every low, low, low. Even if it's just to have someone to bounce ideas off of and vent to, that outlet is so vital to mental health through this infertility thing. It affects everything, and sometimes an outside person can really give you perspective. And coping skills. Lots of coping skills. I would put therapy up there with wheat grass and PIO. Seriously, that important.

So, I don't know if I answered all the questions, but that is my personal definition of being a good patient. How I try to make my experience bearable and productive. Understanding of course that I have had NO lasting success and so this is hardly my handbook to getting pregnant and having your family completed. That's not what I'm trying to say at all. These are just my way of surviving this process, sanity mostly intact, trying to do everything I can to influence the uncontrollable and make my trip towards parenthood as efficient and productive as possible.

For some great resources, check out my book list on the right--all great resources for learning more about the process. My personal absolute favorite is Surviving Infertility by Elizabeth Swire Falker. That is like my Bible. It is so dog-eared and stained because I reference it all the time, even now. So there you have it, my five cents. I hope that this has been helpful to you, Em, and to anyone else along the way!

3 comments:

  1. ACK! I forgot YOGA! Yoga for fertility is lovely, yoga in general if you don't have the special kind. It's restorative and does wonders for state of mind, muscle happiness, and opening up hips and pelvis and all that good stuff. Add yoga to my list! :)

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  2. This is excellent, Jess! ALL of this advice is wonderful. The wheat grass piece really stuck out to me. Did you make it yourself? And if so, did you just use a regular juicer? How fascinating.

    I really appreciate that you took so much time to answer my post! I'm definitely planning to incorporate a lot of this stuff into my daily life. Thanks again!

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  3. Oh, I'm so glad! You can juice your own, I think a regular juicer will do it but I was not that industrious. I got mine from the same place I do yoga--they squeeze a shot fresh for you on the spot and give you an orange slice "chaser" (it is not the most pleasant stuff you could put down the hatch). I also have gotten juice with wheatgrass in it from my grocery store that was squeezed earlier that day, but fresh is best. I heard BJ's has frozen wheat grass shots that you can thaw and do at home, and there may be some at your grocery store, too. I hope some of this stuff works out for you, if only for the peace of mind piece. Again, I'm not the best spokesperson for any of it given my dismal track record, but it's all good for you regardless. :)

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