Friday Freakout: Bad Clinic Behavior

I don’t understand why IVF clinics aren’t more sensitive to what their patients are going through. I don’t understand why they aren’t more careful to ensure they don’t stress us out more than we already are, and why they don’t make the effort to provide us with more information and greater transparency, so that we can have some sense of trust and control in a situation where we are vulnerable and powerless.

Photo by takomabibelot

The Wacky Wicketeer and I have been patients at three clinics in Northern California. Here are some of the stressful mistakes we have encountered:
·        Failed to diagnose me properly
·        Failed to inform us of miscarriage risks to IUI due to our diagnosis
·        Miscalculated dates on IUI protocol calendar
·        Made us wait over an hour in the waiting room, making our appointment over an hour late (multiple occasions, and multiple clinics)
·        Miscalculated prescription quantity
·        Mishandled post-miscarriage fetal tissue
·        Improperly tested post-miscarriage fetal tissue
·        Lied about limitations of genetic testing of post-miscarriage fetal tissue
·        Failed to return phone calls (multiple occasions, and multiple clinics)
·        Failed to respond to emails (multiple occasions, and multiple clinics)
·        Talked to me like I was an idiot for asking about the safety of progesterone suppositories during pregnancy, after I had already miscarried once while on them
·        Delayed submitting my prescriptions to the specialty mail-order pharmacy until the last minute (I only received them 18 hours before I had to use them because I spent two days on the phone yelling and pleading with people)
·        Failed to timely submit an insurance claim
·        Minimized & failed to warn me about potential recovery time after egg retrieval
·        Delayed my cycle start date by a week for a non-medical reason after we had already rescheduled work, work travel, and numerous other activities
·        Tried to delay my cycle start date by a week for a non-medical reason a SECOND TIME, after we had already re-rescheduled everything around the first change
·        Delayed giving me dates for an injection class until a week before, such that I couldn’t go because I already had bought plane tickets, conference passes, and made reservations for an out-of-town conference
·        Failed to give me a pre-emptive pain med prescription for the most painful experience of my life
·        Failed to provide thorough information on costs and insurance coverage for IVF
·        Failed to provide an information packet of any sort on how that clinic does IVF
·        Lack of transparency as to staffing changes that may be occurring during a cycle

I have received apologies--from a newly-hired nurse for rescheduling, and from a doctor for my painful experience. I still see that nurse and doctor. Nothing else on this list has been corrected or apologized for. For a service that we gamble tens of thousands of dollars on, and that requires us to substantially rearrange our lives for a painful, mere attempt, at having children, the very beneficiaries of our struggle, the fertility clinics, should be more conscientious of how their mistakes and behavior affect us.

The larger, immediate problem when these sorts of mistakes occur is that it strikes at the heart of an in-progress IVF cycle (or other treatment). It makes us doubt the very people that are supposed to be important members of our team. For me, the single thing that most influences my anxiety level during an IVF cycle is my faith and trust in my fertility team. That includes my clinic staff, nurses, embryologists, doctors, phlebotomists, pharmacists and geneticists, as well as my husband. While other people can be supportive and helpful during an IVF cycle, if they aren’t, I can block them out while in-cycle. I can’t block out this group. I need them, and I need them to be reliable and trustworthy.

I know we’re not the only ones, so what clinic mistakes and issues have added to your infertility stress?

Friday Freakout: IVF Meds

I’m calling this post a “Friday Freakout” as a tribute to the fact that my greatest psychological challenge is anxiety. It rots my gut on a regular basis.

So guess what? We’re there. Where? IVF number 2. I started my morning injections of Lupron on Thursday, and start stimming next Thursday night. My protocol is 10iu of Lupron daily until next Thursday, then drop it to 5iu, and add 225iu daily of Follistim. My last birth control pill is tomorrow, so CD 1 should be about next Tuesday. I’m also taking Metformin, prenatal vitamins, DHA, CoQ10, and extra calcium and vitamin D, but these are all oral pills. Only the Follistim and Lupron are injections.

On August 26^th I’ll go in for a monitoring ultrasound, and my RE will decide whether to schedule me to trigger, or have me continue on Lupron and Follistim longer and return for another ultrasound before triggering. Our first IVF, we had a low percentage of the total eggs retrieved that had triggered properly. My understanding of the trigger is that it tells the eggs it’s time to go from 46 to 23 chromosomes, so they can be fertilized. My RE thinks it didn’t work on a lot of them because they had grown too fast. In other words, I was “over-stimmed”.

Even though we had a single, genetically competent, girl embryo that made it to transfer, since she didn’t implant and we didn’t have any others make it to blastocyst stage for freezing, that cycle was a total bust. The only thing it did was give us very expensive clinical data showing we end up with a lot of chromosomally abnormal sperm and eggs, thus conceiving chromosomally abnormal embryos. That is, when they are able to actually conceive.

This time, my dosage of Follistim has been decreased, and an additional stim dropped entirely, with the hope that this will allow more of my eggs to mature a little slower, and properly trigger. This is what we are now hoping and praying for virtually every day.

I’ve also decided that I’m going to learn how to give myself the injections this cycle. That does not mean I will actually be doing them all myself. Nurse Stepmom is again generously giving me my injections, but I’m going to have her teach me how. I’ll do a couple under her tutelage, on the off chance I get stuck having to do it myself. But until that happens, I’m having her do it! I haven’t had pain or a bruise from any of these injections yet, and I firmly believe I owe that to her expertise and skill! This process is stressful enough without having to stab myself every day.

And no, the Wacky Wicketeer is not allowed near my shots. You see, my big, strong husband is afraid of needles. Despite this fact, he grudgingly said to me one day, “I guess I could try giving you a shot.” I replied with a firm, “no way!” I love him for wanting to help, but what I don’t need is a husband passed out on the floor and me still standing there, having to stab myself.

Finally, I promised my tweeps (friends on Twitter, for those who aren’t) that I would share another use for the insulated bags Dove gave us at BlogHer ‘11. Here it is: Transporting our IVF meds that are supposed to be refrigerated! Hey, if it’s good enough for ice cream…

If you have any questions about anything I’ve discussed in this post, please don’t hesitate to ask!