As a way of documenting where we are in our journey and to sort of set a starting place, I thought it would be helpful to share some of the logistics of our IVF journey so far.
In April 2011, we started exploring IVF with CCRM and a local provider. Our local provider suggested that our odds of a healthy successful pregnancy were the same with IVF as they were with us just trying, so they said that we should just keep trying and not waste our money chasing an IVF baby. After looking at their statistics and those of the general population for our age (b: 37, me: 40) group, we could see that she was right. The odds for most IVF clinics in our area are pretty low- as are the odds for women in my age group. We didn't like that answer but appreciated her honesty. We did have a series of blood tests, genetic tests and physical tests to determine if there were any contributing factors on that end. There weren't.
At the same time, we researched genetic testing and IVF for women over 40 to see if there were any outliers- were there any clinics that were more successful with this age group? Yes, CCRM came up as one of the few clinics that was working on, and managed to find better odds for couples facing advanced maternal age (AMA as it's affectionately called).
In the spring, we also attended an adoption orientation with an agency in our area. It was interesting, as the couple that was their showcase couple to answer questions was philosophically in the exact opposite camp as the agency was in terms of their position on open adoptions.
August 2011, we contacted CCRM to let them know that we were interested in having a phone consultation and exploring our options with them. About two weeks later, we had our 1/2 hour chat with Dr. Schoolcraft on the phone. He seemed gentle, quiet, straightforward, and helpful in answering every single question I had. They said to call back on Day 1 of my next period to set up the one day work up (ODWU), which is a full day of testing at their clinic.
Mid September 2011, I called them to set up an appointment for our ODWU. We had to purchase tickets to fly into town for both of us, so we asked for a Monday or Friday appointment, which they were able to accommodate.
Ten days later, we were in Colorado, getting pulled, poked and probed to make sure that they had all the information they needed to determine what our challenges were and so that we could address them. I'd recommend checking out AuntieEm's awesome blog (http://ccrmjourney.wordpress.com/) for a great tour of their facility.
The plan is below. We did get off track for some of the appointments, which they said was fine, so long as it wasn't when we were to meet with the doctor- we had to be on time for that meeting. Since there are times when partners can't be present, and just so it's clear which times he could be there and which times he wasn't allowed, I've noted when B was present.
7:30AM: Orientation with two other couples and a single woman led by a nurse. It was pretty straight forward: here's who we are, what we do, what the process is, don't read blogs (haha!), your cycle will be your own, the nurses are available these hours and at this number, etc. B was there with me after he finished his donation to the cause.
8:30: Baseline doppler and ultrasound. (B was there.) I've had a follicular count done before, but this sonographer was amazing; she explained everything she was doing, what she saw, and helped us to see what she was talking about. We found out that I have 10 follicles on the left and 8 on the right! Plus, I have two extra-ovular (outside of the ovaries) cysts, which she said were absolutely normal and nothing to be concerned about. She also used the doppler to measure the blood flow on each side. They recommend NO CAFFEINE for 72 hours before this test. I had a small bit of chocolate the night before and it showed. I was on the border for not having good blood flow on one side. (WOW, that's sensitive!!) And, what if you have bad blood flow? They send you to an acupuncturist to get things moving, then you have to delay a month, so this is crucial. The sonographer was very friendly and kind. Recommendation moving forward: NO caffeine. Seriously. Not even a little bit. Seriously, I mean it.
9:00: Consent forms with the Fertility Labs of Colorado (FLC). FLC is the company that CCRM makes you do all your blood work through. The consent part was fine, we decided not to participate in their research studies, as the specific projects are not defined in the consents and because it's a private for-profit corporation, with no direct public good. (We both had to sign consent forms).
9:45: Hysteroscopy with Dr. Schoolcraft. B wasn't allowed in the room. Per typical doctor's appointments, I waited for what seemed like 15 minutes for him once I got in the room and stripped down. When Dr. S. walked in, I joked that at least we've talked on the phone, so we've sort of met before...he sort of chuckled and got down to business. He and the nurse asked me questions about my work and life to distract me from what was a nearly completely painless and very quick procedure.
10:00: Regroup with Dr. S. (B was brought in.) This is the meeting where he talks about what's possible, what's not, and we assess going forward. He said that from all the information he had, it looked like we were a pretty promising couple. I did have one place of irregularity in my uterus that he'd avoid during implantation, but overall, things looked good. Because I had FSH tests from my previous clinic, he said that the nurse could come up with a draft of our calendar after getting our AMH test results and that we should have a calendar by the end of the next week.
10:30: IVF consult with Nurse. We met our primary nurse contact at this time. She was very helpful and answered all of our questions with compassion. This being our very first experience with IVF, we expected to have a bit more explanation about the big picture in terms of the process and timing of everything as well as a demonstration of the shots, but we got a video, which you can view on their website. Because we were opting for the CCS, we had to watch a poorly produced video on that procedure. She told us the estimated costs- we're coming in at about $40k including the testing and all of the trips. For some perspective- international adoption is about as much, depending on the country.
12-1:00: Lunch- there's a little strip mall right up the street from CCRM that has two decent restaurants for a quick lunch. We brought our consent forms from earlier in the day to read over and sign while we ate.
1:00: Blood tests: This is where we ran into some trouble with the FLC lab. When we got there, we had to check the labels and make sure that our name and birth date was correct. We appreciated them checking. However, when it came time for the blood draw, the flabotomist took three times to get my vein! Perhaps the worst part was her squirreling around once she got the needle in, not just a poke and thank you very much. Thank goodness there was another lab tech passing through, as she was the one that eventually got the needle where it needed to be. Then, came the rather large ~$3,000 bill for the various tests. We paid, but got a call the following Monday that the computer was off, so it didn't go through and had to pay again.
1:30: Business office: We paid our $1,000 deposit for IVF and off we went...
Fast forward to the end of the next week, when we are supposed to get our draft calendar...we emailed on Thursday, hoping to hear from someone because I had my family doc appointment and wanted to be sure that I had a list of further tests that I needed (annual physical, pap test, mammogram, vitamin d, etc.). I also wanted to know if they got our test results back, what they were, and if we would be getting our draft calendar. (We literally had no idea what the time line looks like, so anything would have been helpful here). I got a reply that our primary nurse was away but would reply tomorrow.
Then, we emailed on Friday and they said that our primary nurse was out again. I emailed back that I didn't necessarily need it from my primary nurse, we'd take a calendar and results from anyone. Then, when I didn't hear back by 4pm (their time), I called to follow up. (I thought the office closed at 4:30 on Fridays and didn't want to miss anyone.) Now, you might think I'm being freakish about this calendar thing, and maybe I am--a bit. But, we're planning a move and flights to get me to my sweetie to help him drive...so we kind of need some dates. Well, the nurse said that there was nothing in my chart about dates, that the primary nurse would be out until Monday and the doctor would be gone until Tuesday.
So, no calendar until next week. Which means more costs because the prices will go up now that We're less than a week away from the trip. This is definitely a challenge. If the doc hadn't told us that we could expect a calendar, if he'd said in two weeks, or even three- we'd know to plan for that. If they gave us a general guideline for when we might need to be available for various appointments, we could plan that. But now, we are stuck without a plan and increased costs for an already outrageously expensive procedure.
So far, mixed impressions.
Saturday, October 1, 2011
Dum Spiro Spero: While I breathe, I hope...
Welcome! My partner, B, and I have just started on our adventures in infertility with CCRM--from abroad! So, we thought it would be helpful to provide a place to share that experience for those who are considering embarking on this journey from afar.
As some background, we're in a subcategory of infertility (IF) called Recurrent Pregnancy Loss (RPL), which raises different issues that other kinds of IF. For example, we have been pregnant three times in the past two years, but have lost all three. I do ovulate regularly (but not such good eggs) and my partner has good swimmers. So, IF interventions alone aren't really helpful or going to solve our problem of not being able to have a viable birth.
Which is what brought us to Colorado Center for Reproductive Medicine (CCRM); they do Comprehensive Chromosome Screening (CCS), which is a genetic test that is conducted at day five, when there are more cells than previously available tests that test at day 2 or 3. Because there are more cells available, they can take a larger sample and get a better idea of the variation that is within just that one cell versus the entire embryo.
About us:
We got married in the summer of 2009 and didn't know it, but were almost five weeks pregnant then. We lost our little one at eight weeks, it was a natural miscarriage, two days after my 39th birthday (awesome!). We told lots of friends and family about being pregnant (consider that painful lesson #1- it's awful and awkward for everyone to have to answer questions after the loss). It took us a long time to recover, but we bounced back, ready as ever to have kiddos. We didn't do genetic testing, we had no idea we were RPL candidates at this time.
The following March, we got pregnant again and held our breath...we lost that baby at 8 weeks on May 1st--on the very day that we were moving (awesome again!). We didn't tell anyone we were pregnant (painful lesson #2- over correcting isn't the right answer- it's just as awful to be alone in your pain and loss). That's when I hit the wall, my heart grew harder, I grew bitter and angry after that loss and we grew scared to try again. We did genetic testing and found out she had a trisomy dislocation so she never would have lived, even if she had made it further along. Her name was Astrid, for the stars. Eventually, with some time, love, and a really wonderful rabbi's help, it got better...[Edit: we later found out this pregnancy was actually twins.]
In October, we got pregnant again...and again, we held our breath. We were so excited, we wanted to do everything as right as we could. When the doctor told us we shouldn't travel (to be with family) because we were high risk and there's a possible connection between flying and miscarriage, we canceled our flight plans and began planning a quiet holiday break alone. On December 23rd, we went in for our 6 week ultrasound (it was earlier than they would typically do a first ultrasound because I was diagnosed RPL and on early watch). It's interesting how you can read a complete stranger's face. I knew when I saw the radiologist's face what the fate of the heartbeat and our LO was...there was no heartbeat. We had yet another miscarriage.
But this time we were to learn about a new kind of trauma-- the missed miscarriage.
Since my body wasn't showing any signs of wanting to let him go, we needed to make plans to intervene. But, because it was 1 day before the Christmas eve, all of the clinics were closed until January 3rd. As an alternative, the doctor told us we could go to the hospital and wait (starving and nearly naked on a gurney in the hallway), until they could get to us. Then she told us about a patient who waited for two days, not eating, to get a simple d&c. (Yes, we live in a developed country.) Not a real option. When the clinics reopened on January 3rd, they had a week's worth of emergency and back up appointments to address, so we didn't get any medical services until January 10th, nearly three weeks after we found out that he didn't have a heartbeat. We decided on a vacuum aspiration because we were concerned about potential scarring from a D&C. Adding insult to injury, what we didn't know going into the procedure was that a resident would be doing it--she was inexperienced, didn't tell us what was going on, and was generally just awful! We did have a pathology exam done on the embryo and found out that he also had a trisomy disorder. We didn't have the heart to name him, it was just too much to bear, especially at that time of year. I just kept thinking, "Now, this is the stuff of Job here, folks. I mean, come on!" It was surreal. Disassociation with the pain and my feelings was the only way I could find to deal with the despair.
Since that time, we've been trying and I've been burying myself in research about adoption, IVF, embryo adoption, and egg adoption. So, it's been about 9 months that we've been trying this time around, but I have to admit to being scared to get pregnant without any interventions to give us our best chances for a healthy kiddo...which is why we've decided to go to CCRM.
Throughout this experience, I've often thought of my friend Elena and her eight (now adult) children and four miscarriages that she openly shared with me in my youth. In tough times, she used to say Dum Spiro Spero- while I breathe, I hope...
Hey, we're still breathing!
As some background, we're in a subcategory of infertility (IF) called Recurrent Pregnancy Loss (RPL), which raises different issues that other kinds of IF. For example, we have been pregnant three times in the past two years, but have lost all three. I do ovulate regularly (but not such good eggs) and my partner has good swimmers. So, IF interventions alone aren't really helpful or going to solve our problem of not being able to have a viable birth.
Which is what brought us to Colorado Center for Reproductive Medicine (CCRM); they do Comprehensive Chromosome Screening (CCS), which is a genetic test that is conducted at day five, when there are more cells than previously available tests that test at day 2 or 3. Because there are more cells available, they can take a larger sample and get a better idea of the variation that is within just that one cell versus the entire embryo.
About us:
We got married in the summer of 2009 and didn't know it, but were almost five weeks pregnant then. We lost our little one at eight weeks, it was a natural miscarriage, two days after my 39th birthday (awesome!). We told lots of friends and family about being pregnant (consider that painful lesson #1- it's awful and awkward for everyone to have to answer questions after the loss). It took us a long time to recover, but we bounced back, ready as ever to have kiddos. We didn't do genetic testing, we had no idea we were RPL candidates at this time.
The following March, we got pregnant again and held our breath...we lost that baby at 8 weeks on May 1st--on the very day that we were moving (awesome again!). We didn't tell anyone we were pregnant (painful lesson #2- over correcting isn't the right answer- it's just as awful to be alone in your pain and loss). That's when I hit the wall, my heart grew harder, I grew bitter and angry after that loss and we grew scared to try again. We did genetic testing and found out she had a trisomy dislocation so she never would have lived, even if she had made it further along. Her name was Astrid, for the stars. Eventually, with some time, love, and a really wonderful rabbi's help, it got better...[Edit: we later found out this pregnancy was actually twins.]
In October, we got pregnant again...and again, we held our breath. We were so excited, we wanted to do everything as right as we could. When the doctor told us we shouldn't travel (to be with family) because we were high risk and there's a possible connection between flying and miscarriage, we canceled our flight plans and began planning a quiet holiday break alone. On December 23rd, we went in for our 6 week ultrasound (it was earlier than they would typically do a first ultrasound because I was diagnosed RPL and on early watch). It's interesting how you can read a complete stranger's face. I knew when I saw the radiologist's face what the fate of the heartbeat and our LO was...there was no heartbeat. We had yet another miscarriage.
But this time we were to learn about a new kind of trauma-- the missed miscarriage.
Since my body wasn't showing any signs of wanting to let him go, we needed to make plans to intervene. But, because it was 1 day before the Christmas eve, all of the clinics were closed until January 3rd. As an alternative, the doctor told us we could go to the hospital and wait (starving and nearly naked on a gurney in the hallway), until they could get to us. Then she told us about a patient who waited for two days, not eating, to get a simple d&c. (Yes, we live in a developed country.) Not a real option. When the clinics reopened on January 3rd, they had a week's worth of emergency and back up appointments to address, so we didn't get any medical services until January 10th, nearly three weeks after we found out that he didn't have a heartbeat. We decided on a vacuum aspiration because we were concerned about potential scarring from a D&C. Adding insult to injury, what we didn't know going into the procedure was that a resident would be doing it--she was inexperienced, didn't tell us what was going on, and was generally just awful! We did have a pathology exam done on the embryo and found out that he also had a trisomy disorder. We didn't have the heart to name him, it was just too much to bear, especially at that time of year. I just kept thinking, "Now, this is the stuff of Job here, folks. I mean, come on!" It was surreal. Disassociation with the pain and my feelings was the only way I could find to deal with the despair.
Since that time, we've been trying and I've been burying myself in research about adoption, IVF, embryo adoption, and egg adoption. So, it's been about 9 months that we've been trying this time around, but I have to admit to being scared to get pregnant without any interventions to give us our best chances for a healthy kiddo...which is why we've decided to go to CCRM.
Throughout this experience, I've often thought of my friend Elena and her eight (now adult) children and four miscarriages that she openly shared with me in my youth. In tough times, she used to say Dum Spiro Spero- while I breathe, I hope...
Hey, we're still breathing!
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