Wednesday, December 30, 2009
Our embryos are going to have to be put through a lot with the PGD test and chromosomal testing, so they need to be as robust and healthy as possible. How do we get healthy embryos? Chris and I need to RELAX so that we create the highest quality material for their experts to work with. That means we go to work, come home and put PJ’s on and put our feet up. No hassle. Go to bed early. Do a whole lot of nothing. I have had some valuable time in December to get ready for this:
1. I have blocked off our calendars. We are not accepting any social engagements of any kind. I even put great big fluorescent pink stickers in my calendar that say “Schedule Nothing!” so as I bump into interesting sounding things to do, and reach for my calendar thinking “I can probably make that work!” that there is a great big reminder that I need to be home with my feet up and doing nothing else! Forgive us for being anti-social next month, but as much effort, money and energy as we are putting into this whole thing, we can’t afford to do anything that would put our chances at risk!
2. I am off work this week and I spent a day doing nothing but cooking. I have filled my freezer with lots of healthy yummy things so that my responsibilities are as minimal as possible. I am also definitely going to have my cleaning lady keep coming so that really, the only household thing I have to do is laundry and light grocery shopping.
3. As everyone was winding down for the holidays at work, I kept soldiering on, and churned through a crazy amount of stuff on my to do list. January is a tough time at my office. It is usually the most stressful month of the year. I did as much as I possibly could to prepare, and work ahead.
4. I have gotten completely sucked into a new tween vampire series of novels that are incredibly addicting and are just complete mind candy. (They are the House of Night books if anyone is interested!) They require no real thought, and I can feel my blood pressure come down as I settle in with one of those. I plan to keep reading stuff like that through January. I’ll save the thought-provoking award winning novels for another time in life. Right now, I just need trash that is fun to blow through! Got any fun things like this you think I should try? Send me a note and let me know!
So now with getting started! Today, I had my baseline appointment at the clinic. We started off by doing the initial ultrasound to check how things are doing. All looks perfect with my uterus and they feel comfortable moving me onto the big hormones.
We did injection training, as I will have to give myself a bunch of different shots throughout this whole thing. The first two weeks of the month, they are putting me on a hormone that will essentially make me go through menopause in a way. It will shut my reproductive system down. The reason why is that later in the month they will kick it back up and send it on overdrive so that I will release multiple eggs when I am getting ready to ovulate. Most women only drop one egg a month. We clearly need more than that to be successful with in vitro, so they have to trick my body into dropping several eggs. There were several hormones they will give me at different times in the coming month (about 4-5 different ones) so I will be a pin cushion!
I start this whole injection thing on Friday (ohmygoodness!!!). I feel pretty comfortable with doing this first round. The needle is small and I do it in my stomach. On a similar note, I have been getting allergy shots for the last two years, so I am pretty well used to that procedure (I feel like I could give them to myself by now, I know it so well!). The needles are very similar so I feel confident I can do this. I will get a package of my remaining medications on Tuesday of next week. I will take a picture and post it so you guys can see what a subterraneous drug user I have become!
We signed all the paperwork and paid the big check for the whole procedure. Signing the paperwork was like signing for a house or a car. We signed many documents in several different places. It was quite a contract! We signed indicating that we were aware of the procedure and risks, that we were able and willing to pay the hefty fees, and the trickier parts of this were the parts on our advance directives on what we want done with our leftover viable embryos.
The odds are that we will end up with leftover embryos that are MCADD free that are strong and could yield a pregnancy. We plan to keep any leftovers and save them for a few years until we know for certain we are done having babies. But what then? And what if one or both of us die? What happens to them then? This has been a tough ethical decision to weigh out. Chris and I are usually right on the same page when it comes to things like this. It is part of what makes us a good match for one another. On this issue we are somewhat split, which surprised me greatly! I am in favor of donating them to research, while Chris wants to donate them to an infertile couple. I was absolutely amazed by my husband’s kindness and generosity! My big concern is that we are not like teenagers that plan to give a baby up for adoption that can maintain some kind of separation throughout their existence until it is time to give it to someone else. I will always feel like they are my children, and I care a great deal about the environment in which they are raised. Just because you have the money to do this sort of thing does not mean that you will be a good parent. I am ok with donating if the parents can be screened in some way. Then, what if the child tries to find us later in life? How would we feel about that? Fortunately, we have a few years before we have to make that decision and can weigh it out.
As for the “what if we die” question, as morbid as it sounds, we are going to meet with a lawyer to get a will drafted as soon as possible. We have to have this in place before we have leftover embryos to freeze. Again, we are not quite sure how we feel about it, so we are going to appoint a family member as the legal guardian of them who will make the decision for us if something happens. That will hopefully give us some time to figure this out.
Please pray for us this coming month! I will be very hormonal throughout the coming weeks (granted, I am still doing acupuncture which is supposed to help with that quite a lot, More on that in another post!), and then will have the actual egg retrieval and implantation in the week of January 25th! Woo hoo!!
Sunday, December 13, 2009
In that same vein, I started seeing an acupuncturist because I have heard that they can help get hormones back in order. They can help with weight loss. They can provide some help with emotional things. They can get your body systems in great shape for infertility treatments. I needed all of the above and I was willing to try anything. I was scared to death because I saw an acupuncturist when I was pregnant, and it did not go well. I don’t know what that guy did, but within 24 hours of treatment, I was an emotional nightmare, sobbing for no good reason. It always went away within the 24 hour period, but it scared me. I went a few times, and decided it wasn’t worth it. Acupuncture is not a very well regulated trade, and people can pick up degrees in it from anywhere. You have to do some homework and find a good one. The lady I chose to see this time is one I heard about from all of the moms in my prenatal yoga class. They all sung her praises and swore by her for an assortment of issues. I have to say that from my own experience, she is quite amazing, and has eased a lot of the stress and physical issues I was facing off of my life. She has gotten my hormones in order again. She has helped me lose weight. On the emotional things, when I have had a bad week, she has a protocol for how to help give me a break from the heightened emotions I feel. It gives me room to use the tools I have learned in counseling and grief groups.
For example, I had a really bad few weeks, and every week, she would look at my tongue and tell me that I was “yin deficient” or “blood deficient.” She would tell me that I needed to eat more red meat. I would walk away thinking “whatever, witch doctor…” and not really put any effort or energy into it. Finally, I got sick of her telling me this, so I went home and I ate red meat every day. Oh my goodness what a difference it made! My energy was better. My emotions were better. I now eat red meat every day and it helps me tremendously! Another week when I was really in a bad spot emotionally, and couldn’t seem to get out of my funk, she put me on a herbal regimen, taking a couple of different supplements, and I felt like a new woman by the time the week was over. I no longer question her judgment and just go with the flow with what she prescribes.
The jury is still out on the impact it has on infertility treatments. They say that if you do it for a series of treatments before you do your IVF cycle, it helps your body respond better to the drugs, and gives you a better success rate of it working the first time. This acupuncturist is about to be published in some big hoopla fertility journal for a study she did on a few hundred women in the area. One in four did not have to go back for subsequent rounds of IVF treatments. For those one in four women, it worked first time (the average is that it takes most women 2.5 times of doing IVF before it takes). It is also supposed to help minimize the side effects of all the hormones and other drugs they put you on. I hope that is true!
I am not going to say that she is the sole source of my healing thus far. I have been in tons of counseling and support groups. I have done some old fashioned hard work with diet and exercise. I am merely stating that this doctor is in my repertoire of things out there that I have used that is a part of my overall health and well-being. I can wholeheartedly say that I gotten some very good results from it. Getting the physical me in shape has definitely helped to make the emotional side much easier to handle. Acupuncturists are into whole self healing – physically, emotionally, spiritually. It is great to have someone being a caretaker of me in such an all-encompassing way!
For my post on my first experience with acupuncture when I was pregnant, go here:
Thursday, December 3, 2009
Modern science is really quite amazing. Just as a refresher, PGD stands for “Pre-implantation Genetic Diagnosis.” This is the science where they can test an embryo before it is implanted to see if it is sick or not. The first step in all of this getting pregnant again stuff centers around getting this test built, so that as soon as we have embryos created, they can be tested right away and we will know very quickly which ones have MCADD, and which ones do not. The timing of this is very sensitive so we have to work very hard to have all of our ducks in a row from the start.
Step 1: Toothbrushes
Last post, I talked about the toothbrushes that the lab was sending us to collect our DNA samples. We were on pins and needles the day they were supposed to arrive. We were just so excited to physically do something towards this goal. I sent my parents by my house mid-afternoon when the mail arrived to see if it was in there. Nothing. They weren’t there. Bummer. We went on about the rest of the day. That evening, at about 9pm, Chris and I took Maggie for an evening walk, and wedged in the door was a FedEx package! It was addressed to us from the lab. This is it! We thought it was coming regular snail mail and didn’t expect this. We hurried up and got Maggie around the block, and then hopped into the car to go up to Woodland Park to my parent’s house. They wanted our parent’s DNA samples as well, so they sent toothbrushes for my parents in our package. They sent some out to Kansas City to Chris’s parents as well, so Chris called them on the way up the mountain. That evening, we all scrubbed our cheeks as the instructions directed, and the next day, all packages were back out on their way back to the lab through FedEx.
You swab with the brush for 30 seconds, and then stick it in the tube thing.
Just before the swabbing began. In the picture is Chris, Dad and Me.
Step 2: DVD
After the tests were sent back to the lab, in our packet of things that came (aside from the toothbrushes) was a DVD that we had to watch before we met the doctor. It walked us through the whole process. We had a pretty good handle on what was involved having researched it pretty thoroughly already. The thing that struck me was all of the parents that they talked about and interviewed all had pretty much the same story as us. They were either caring for a very sick child, or had lost one like us. It was both comforting and sad.
Step #3: Phone Consult with the Doctor
After we watched the DVD, we had a phone consultation with the doctor that runs the PGD lab we are using. In the DVD we learned that this guy was one of the ones working on the human genome project. He is also the guy who developed the PGD test. There are only three places in the country that can do this testing. He trained the other two how to do it. He is the head honcho, and his clinic does more than the other two. It was amazing to have access to him like this. He was really open and friendly, and eager to teach us as much as he could on what they were going to do. It is highly unusual for a lab to talk to patients like this. If you think about it, when you go to labs for most things, you give them your sample, and then the results are shipped to your doctor, who interprets them and tells you what you need to know. This doctor is very passionate about what he does and the people he helps and likes to be the one to teach you about what he is going to do, and answer any dumb question you may have so that your stress and anxiety over the whole thing is minimized as much as possible. He was super caring and open, and it really reinforced what a great decision we have made.
Here’s what we learned:
For our genetic issue, they have to build a probe unique to us. As he described it, genetic code is made up of four letters,that are used over and over again in various sequences. One person’s genetic code is thousands of characters long. Think of a several volume set of encyclopedias. They tell what eye color you will have, how tall you will be, your gender, etc. He equates a genetic mutation as a “molecular misspelling” of a person’s genetic code in one particular spot. The probes they build are, in a sense, genetic spell checkers that look for those misspellings. They know that MCADD is in chromosome 1 (or book 1 of the set of encyclopedias), chapter 31 of the book, in paragraph 6. The spell checker they are building for us will look for a misspelling in paragraph 6. The typo can happen anywhere within that segment of characters. Depending on what the mutation looks like in the mom and in the dad, it can vary where in that paragraph the misspelling will be. So, we can not use anyone else’s already created test. It is unique to each couple.
In addition, the timing of being able to locate the issue and report back on the health of an embryo is crucial. An embryo can only live outside of a uterus for 6 days. They have to be able to turn results around overnight. He said that they will have three PhD scientists working on our case, and they will work 17-18 hours straight through the night to get it done in time. So, having a very specific test that can find the issue quickly is key. On a fun note, our team that we have been assigned to is called the Blue Team, and they are designing and building our test, and will test our embryos as well.
Once the test is built, it will be stored at their lab for as long as we need it. This can be years and years down the road if need be. We do not have to pay storage fees. If we do more in vitro in the future, and have to test more embryos, they will have it ready for us.
They have a 2% error rate. This basically breaks down to in the last 18 years since they have been doing this, they have had 16 cases where they found an embryo to not be sick when it actually was. They have, however, never mis-diagnosed MCADD. The fact is that it is not a perfect science, and they insist on either an amniocentesis or a CVS test once I am pregnant to make sure that everything is ok.
We are going to go ahead and have them do the additional chromosomal test that looks for down syndrome, spina bifida, cystic fibroses, and a whole host of other issues. They can do all of that plus the MCADD test off of the one cell we will be sending them, and within 24 hours. That is so amazing! A year ago they couldn’t do both tests at once off of one cell, but they have within the last year figured out how to do it.
We also are going to get set up to donate our MCADD positive embryos to them for research purposes. We had initially hoped to donate them to the Children’s Hospital in Denver for their research, but they do not have the proper certifications to accept stem cells. Giving them to the PGD lab is, as we have learned, probably a better way to go anyhow. They have a really wonderful program set up that is fully funded by a grant. They have partnered with Stanford University, which is where most of the work will take place. Chris and I will sign some papers stating our intentions with our sick embryos. Stanford will then send our IVF clinic a mini-incubator that they can package our embryos in, and send them with expedited shipping via FedEx to their lab. Once they are there, they will insert a pipette into each embryo (which at this point would be maybe a dozen or so cells, and remember that an embryo can only live outside of the uterus for 6 days, so they would not survive anyways without being frozen) and extract out as many cells as they can. At this point, the embryo is no longer an embryo. It is now a collection of stem cells. They will put these stem cells into a petri dish, and be allowed to grow and divide. They grow across the dish in a 2-dimensional fashion. As they do this, the stem cells tell a story about MCADD. Scientists can study them, and use what they learn to develop a cure and/or treatment plan. At Stanford, their whole thing is getting the stem cells set up so that they can be tested. Other labs across the world can contact Stanford and request samples that they can research. For example, I know that in Paris, doctors are studying fatty acid oxidation disorders like MCADD and are testing the use of cholesterol reducing drugs to help treat the illness with great success. They could request that Stanford send them some stem cells that are affected with this illness to further their research. Our donation could be sent to them to help them along. Having been through losing Noah to this illness, I will do whatever I can to help prevent this from happening to other families. This is a “must do” in our books. Best part is that thanks to this grant, all of this will be free, and taken care of behind the scenes. Chris and I just sign a form, and transportation of our embryos to Stanford, the stem cell extraction, the shipping to laboratories and other expenses involved are all covered. Pretty awesome.
Finally, the doctor asked us to send him a picture of us for them to put in the lab where they will be working on our probe. He kindly explained that he went into medicine to help people, but in the line of work he chose, he rarely gets to meet his patients in person, and he and his colleagues really miss that part of it. They like to connect with the people they help where possible, and this is something that they do. We’re sending these two pictures…
He told us both, very emphatically I might add, that we need to watch our stress levels. It has a huge impact on our ability to create robust embryos that can withstand all that we have in store for them. That is hard considering that we are right smack in the middle of the holiday season. We are just sick for our boy, and how different this year should have been. Hearing the doctor talk about this, please forgive us if we are a little withdrawn and don’t show up to as many things as we ordinarily would. Please know that it is for the purposes of self-care, and trying to relax at home as much as possible.
They will have our test done and ready to go by mid-January. Oh my goodness! We are currently weighing out when we want to do IVF. On one hand, the most stressful time at my work is in January. On the other hand, if I can possibly avoid going through another holiday season without a child in hand my world would be a better place. If I get pregnant in January, I will have a baby by Halloween. But if I do it in January, then am I not giving us the best possible chance of being successful with my work stresses? Ugh…ruminating on that right now. None of this is easy, that is for sure!
Thanks for reading. This whole thing is information overload for sure, which is why I end up writing so darned much! We are grateful for your support.
Friday, November 20, 2009
Thursday, November 19, 2009
Now that we have settled on a doctor, it is time to get started doing all of the pre-screening work, and getting the PGD test set up. First off, we called the PGD lab and got the paperwork filled out to start building our test (or as they call it, “probe”) for detecting MCADD in embryos. They were super nice and very easy to work with. The forms were simple enough, and I have now sent them both Chris’s and my genetic test results along with Noah’s over to them. This part is pretty crazy. They collect DNA samples from us using toothbrushes. They are mailing them to us as we speak, and we will scrub the insides of our mouth with them and mail them back. I thought this was amazing. Everyone that I have told about it since learning this all seem to watch CSI and SVU and all those crime dramas, and are like “oh yeah…toothbrushes…” in a nonchalant way. Guess I am not up on the latest medical technologies! Anyhow, they also want our parents to do the toothbrush thing too so that they can be as detailed as possible in making our unique test for us.
Something we are strongly considering doing is we can have them do an extra leg of the test where they look for whole panel of things like down syndrome, spina bifida, cystic fibrosis, etc. It is a little bit more money, but after having been 1 in 15,000 for a disease, I think about the odds of cystic fibrosis being 1 in 2,000, and my stomach flops over. I would hate to spend all this time, effort, energy, and money preventing one disease and overlooking some more obvious ones. I am already going to be a bit of a paranoid mother having lost a child already. To have a sick one after this would just be the end of me. It’s the whole point of why we are doing in vitro to begin with. We can add that on at the last minute. There is nothing special to build for it. It is a canned test that they have ready to go.
So where we stand right now on the PDG test is, they have all of our records. They are sending us the toothbrushes, which will come in the mail early next week. Chris and I and our parents will swab with them and send them back. We will then have to watch a DVD on the whole PGD process that they are sending us and will do a phone consultation with their doctor after that, and get a final projected time it will take them to build our test. We hear it can be anywhere between 4 and 10 weeks. With the holiday season, it may be on the longer end of that, however, they are very familiar with MCADD in this lab and build these sorts of probes all the time, so it could be sooner. We just don’t know. We are fine to be patient though, because we want it done right.
Today we went to the fertility doctor to finish up the pre-screening tests they wanted us to do. Everything we do with them has to be planned around where I am in my menstrual cycles. It does make these visits somewhat inconvenient, because I don’t have much warning (maybe a few days) of when I need to go. There is lots of counting days and guesswork as to where I might be in my bodily processes, but they are pretty adept at guessing right.
I have been pounding the pavement, trying to get my medical records from the other clinics I have seen transferred over in anticipation of this. I must take a moment and say that, holy cow, did I choose the right doctor! I had done a pre-screening test with Doctor #1 (see post called “Breakthrough” below) and he was by far the worst in terms of getting things transferred over in a timely manner. Those of you that know me know that I am crazy organized and have the ability to be like Chinese water torture when something needs to get done, and let me tell you I was on them. I called multiple times, and if the person I needed wasn’t available, I insisted on waiting. I talked to their records person twice yesterday, and she swore to me she would get my records faxed over. Did she? No. Someone else over there mentioned that she is transferring a lot of patient’s records to other clinics right now (rats leaving a sinking ship?). My new doctor called over there today to see if they could fax my records this morning, and they hung up on her. We had no choice but to make do. As I mentioned earlier, everything is so timed as to when you can do stuff, and I don’t want to wait until next month, so we may have repeated a test or two thanks to them. Maybe that is just one more way of them trying to stick it to me for leaving. Who knows. Either way, not impressed, and really feeling even more glad I switched.
When you work with one of these clinics, they all insist on doing some pre-screening work to make sure that everything looks ok. They look at my uterus to check for any abnormalities, along with my ovaries, using an ultrasound. They check my hormone levels through blood work. In vitro is a big deal, and they want to make sure that before they implant anything, that there is nothing weird that could cause problems. Chris got checked out too. As modest a person as he is, I won’t say any more than that! Both of us checked out to be perfectly healthy. There are no issues. We are both very fertile people. They were very pleased to see that, and said that their only concern will be the medications they put me on. Some women respond too well to the hormones they use and their ovaries can be over stimulated, and cause you to drop crazy amounts of eggs. I think the norm is anywhere between 10-24 eggs for a healthy woman. They mentioned that this happened to a patient once where she dropped 40. It won’t kill me, but it is unhealthy. They will be watching me like a hawk to try to avoid that.
They also did a mock implantation to make sure they could get a catheter up into my uterus with no problems. (When they do it for real, they will use the catheter to implant our embryos.) They injected some solution up there and watched to see what happened, making sure nothing fell out and such. It went beautifully with no problems. It was good to know what it felt like and what to expect. It was very quick. It only took about 5 minutes. Granted, when they are actually injecting the real thing into me, it might take longer. It didn’t hurt at all. They used other equipment that was pretty uncomfortable. (Think of a pap smear on steroids ladies.) I remembered my Bradley Method training, and Chris was right there next to me and helped me remember my breathing, and as soon as I relaxed a little bit, it was totally not a big deal. That will probably help with the actual implantation too – being as relaxed as possible, so it is easier for the doctors to do what they need to do. I am going to try to remember that. I have very mild cramps now that it is over. Hardly even worth mentioning, they are that mild. I feel perfectly normal otherwise.
There is maybe one more blood test they might do on me, but otherwise I am done until we are ready to get going with the injections and implantation. I wanted to do this – to get the pre-screening stuff done early so we can just relax and move forward with the real deal when we are ready for it. We won’t be in a position down the road where we are ready, but we have months of work to do before we can get started.
This is so exciting! We have both had big goofy smiles on our faces this morning. It is awesome when you hear you are good at something, and also, again the confirmation that this is not the end of our story is such a comfort. I wore the necklace that Chris and Noah got me for Mother’s Day last year through the whole thing. I wanted a little piece of him there with me, along with the burning hope that there will be Mother’s Days to come in the future. So, here we go! It is on its way.
Wednesday, November 11, 2009
In order to prevent our next children from having MCADD like Noah did, we have to do what is called a PGD test (a testing procedure called Pre-Implantation Genetic Diagnosis). After sperm and egg meet, cells start rapidly dividing until it becomes a fully fledged embryo. Specialists within the field of embryology have become adept at watching an embryo as it divides, and when it gets to about 8 cells big, they can suck one of the cells off, and test it to look for genetic disorders. They can test for a panel of things and can even tell the sex of the baby at that point (granted, unless you have a medical reason for knowing the sex – your genetic disorder is specific to either girls or boys for example – they won’t tell you). It is pretty amazing stuff. Most fertility clinics contract out to large labs to do this work rather than hire someone in house to do it. It is just too expensive to have someone work on site. So, Chris has done a good job of calling these labs and talk to them about their process. Doctor #3 uses the lab that pioneered the PGD test. Also, for some reason, doctor #4 has a policy where they freeze the embryo after doing the PGD test. Freezing and thawing an embryo decreases the success rate. It is, of course, our goal to be as successful as possible at getting pregnant. Doctor #3 doesn’t freeze the embryo after running the PGD test. They want to do a “fresh embryo transfer” (no freezing) because that gives the best odds. Another selling point is that Doctor #3’s main office in Denver (where egg retrieval and implantation will take place) is right next door to the Children’s Hospital. The two organizations talk to one another regularly, and it is our wish to donate the sick embryos to the genetics lab there to help further their research. So, without a doubt, in our situation Doctor #3 is the best choice for us.
I called and got us all set up today. They are going to start building the PGD test. They are going to build the probe (as they call it) specific to us and our genetic issue. Chris said that they do it via a cheek swab that we send off to them. It will take three months. This doctor will not do the egg retrieval/fertilization part until we have the probe built and done, so we have a few months to relax, knowing we are moving forward, but still giving plenty of time to continue all of the work we are doing on ourselves (counseling, grief groups, losing weight from my pregnancy with Noah, and getting my hormones back in order.) I am loving that plan.
I have also decided to trust what everyone is telling me about how the finances of this really are going to be ok and taken care of (again, fundraising friends, thank you so much!) and so I have signed on with my insurance through my work rather that going on Chris’s. Doing the math on it, in order for me to be on Chris’s insurance, it would cost us $500 a month. After having the baby, it would cost $650 a month. And chances are, they wouldn’t cover a penny of the infertility. Frankly, I would rather have the cash. My insurance for me at my work is cheap, and the coverage (except for infertility stuff) is pretty awesome.
I am such a planner. Having everything up in the air for so long was really hard. Just knowing that there is a plan in place, and we are working towards something is comforting to me. I need that. The future is hopeful. This isn’t the end of my story. Just the beginning in fact.
Saturday, November 7, 2009
Then, the other day as I was getting ready for work, I realized that if I want an honest opinion of what this whole process should look like, I need to talk to other women who have been through it. They are not bound to honor their doctors. It is just their own opinions and experiences. Problem is, I don’t know anybody that has done this. Then, I remembered an old co-worker who did it successfully, so I reached out to her. I also talked to my minister to see if anyone in my church has done it that would talk to me. I found success on all ends. I have had some awesome conversations this week and have finally found the answers I was looking for.
Before I proceed with my findings and conclusions, let me just say that I really learned something from this. When facing a huge medical procedure, illness, whatever, I learned that part of doing your homework and getting second opinions from other doctors and such, is that you also need to talk to others going through it. We are the ones that actually take the drugs they prescribe. We are the ones that live through the recovery time. Those are the honest opinions that you need (in addition to what your doctors tell you). There are always people that have gone before you, researched their options like crazy, lived through the choices they made, and then have good feedback on things that would absolutely recommend or do differently next time. (This is as much a reminder to myself as it is preaching at all of you!!)
So, here’s what I know now after having talked to some really fabulous women:
The drugs they put you on are no picnic. I am referring to the injectable hormones you must have to do the egg retrieval and implantation. The consensus was that you pretty much feel like you have PMS, and that part of it isn’t so bad. The issue is the longer term effects it can have on you if you go with a doctor who is too cavalier about prescribing them. If you can avoid being on them for round after round, do it. Think about the women who go through menopause who take hormone replacement therapy and get breast cancer. This is kind of the same thing (I have some calls out to a couple of OB’s to get more official opinions on this). But, you do put yourself at risk for ovarian problems down the road the longer you subject yourself to this level of external hormones. A good fertility doctor will be incredibly anal about how much they put in you and for how long.
Also, another great piece of advice I got was that your overall success with getting pregnant has less to do with the doctor, and more to do with the embryologist. They need to be interviewed as well. Those are the guys who actually create your babies, for goodness sakes! Get a feel for their process. They are usually hidden in the lab, so they are not usually in on the introductions when you go screen doctors, but definitely ask to meet them and ask questions.
That said, those of us living in the Colorado Springs area have a few options to consider when choosing a doctor to do this (and, to prevent being sued for slander, I am omitting names. If you want to know who I am referring to here, shoot me an email or give me a call):
Doctor #1: Overwhelmingly negative feedback on this guy. There are plenty of women in the area that have used him and don’t like him. He is tricky because he does monthly free seminars on fertility in town and he does them well. He is extremely personable, and gives a good sales pitch. He very much runs his clinic like a business, and there are all sorts of incentives to save money (come to his seminar and he knocks $1,000 off the price of treatment for example), so it is easy to get sucked in. But, this is the guy that told me (a completely fertile woman) that I need to do three rounds of egg retrieval. That is 3 months of the hormone injections, which as I mentioned earlier is very dangerous to my long term health. The comment that I heard that I felt was very compelling was “he is not as medically cautious versus medically aggressive to get the result.” Enough said.
Doctor #2: Up until just recently, doctor #1 and this guy were the only two in town that do this sort of work. He was the golden boy between the two. I heard good and bad things about him. I hear that he has quite an ego on him. I haven’t seen him. I do have an appointment with him to check him out, and just from being on the phone with his staff – not so nice. One of the women I talked to used him and had a negative experience. I won’t go into details, but I will say the guy kind of screwed up on her. She left him and went to another doctor to complete her treatment. I am strongly considering cancelling my appointment because I think there is better than him here. Obviously, because he has been dethroned from being the top dog in town by doctor #3.
Doctor #3: This is actually a collection of doctors. These guys are new in town. They are a satellite office of a huge group up in Denver that is very well respected. They had a large group of people from Colorado Springs going up to their clinic, so they decided to open an office down here to serve that population. They are not a full service shop down here. They will do all of the exams and monitoring down here, but when you do egg retrieval or your implantation, you have to go up to Denver to the main office. They are the other doctor we have seen, and they were very strict on only doing one round of egg retrieval on me. They are very conservative, and I think they wholeheartedly agree with limiting the exposure to the hormones where possible.
Doctor #4: This guy is up in Denver, but must be considered. He is the best in the country. People fly from all over the world to see this man. His two big things are that he is extremely meticulous and anal about the medications and dosages, and that he is the guy that has pioneered the art of single embryo implantation. Most doctors have told me that they will implant two embryos to give me the best possible odds. This guy would likely implant one and be successful. The only down side that I have heard about him is that his bedside manner is terrible, but he is the best. This man will get me pregnant for sure. The problem is that when you are on the drugs, you have to be monitored pretty heavily. They want you in their office for blood work and ultrasounds every other day for just under two weeks. Again, the guy is an hour away in Denver. If you have a full-time job, how on earth do you make that work?! On the financial side, he may be the best, but he costs the same as everybody else which is great.
So there you have it! I have a few more people I want to talk to, so I will likely learn more. The decisions I am facing now at the moment are:
1. I am between Doctor #3 and Doctor #4. Two great options. I need to decide soon because it will take 3 months to build the specific test we need to screen our embryos for MCADD. I can’t begin the treatment until that is done. I am not in a huge rush, but I don’t want for us to decide we are ready, and then we have months to wait before we can start. The test can be built and just sit there until we are ready. Might as well get that going now if possible. Just need to decide on a doctor!
2. I want to hear more about the long term effect of the hormones. I will have some of it in me, and I want to fully understand the risk I am taking. I am sure cancer is one of the things I would be at risk for. What else?
3. I am debating on going on Chris’s insurance next year. There is a slim chance it might pick up some of the costs of this, which are considerable. There is, of course, all kinds of language around his policy where you have to be officially infertile before they will cover anything. They define being infertile as either trying for a year, and not getting pregnant, or suffering multiple miscarriages. Neither situation is true for us. We have called and talked to tons of people who all just say “well, you can submit your bills and see what they say.” Right. You know how that will go. Is it worth the effort? We have friends raising money for us (we love you if you are reading this!!! THANK YOU!!) so we will be ok no matter what. Just another thing to consider and maybe try. Chris’s insurance is EXPENSIVE, so there is that too.
Thanks for reading, and this is an open invitation for thoughts and advice if you have any.
Sunday, November 1, 2009
You know, it’s funny. Back in the day when I would hear about others going through this sort of tragedy, and I would try it on for size and think about what I would or wouldn’t do, I had definite ideas on how life would be. Now that I am actually living it, none of the things that I thought I would do actually sound good. The opposite is really what I want. I thought I would pretty much give up on having kids. I thought people that went ahead so soon were callous and trying to replace the child that was lost. That couldn’t be further from the truth. The fact is that being a parent was so unbelievably awesome, that I can’t imagine not doing it again. Noah was an amazing person. We love him deeply. There will never be another child quite like him. What we learned is that having a child and the love you feel for them is the greatest of all the human experiences. How can we miss out on that?
Furthermore, there are two needs in this situation that must be kept separate. One is our love for Noah. Second is our desire to grow our family. Those are two very different feelings and needs. Also, for those of you out there that have multiple children, when you decided to have your next child, it wasn’t to replace the one you already had. It was for the love of your family.
I am and have always been pretty in tune with myself both physically and emotionally, and I can promise you that I am not going to do anything that we are not ready for. I have had a pretty rotten last few weeks, so I can’t imagine pumping myself full of hormones right now. I can, however, do research so that when I am ready I know what we are doing. I can get the lab we choose going on building the probe that will test our embryos for MCADD. It takes three months to complete and can just sit there until we are ready to use it. All of this is far more comfortable taking baby steps. The doctors we have talked to so far have been pretty amazed at us and how slow and methodical we are being. Most of their patients want to get pregnant as soon as possible thank-you-very-much. We are one of the rare ones that are going one small step at a time.
So, the timing isn’t set, but it helps tremendously as we plug along and get reaffirmed over and over again that this tragedy is not the end of the road for us. At first that was the initial slam right in the face 1. we LOVED being parents and our son is gone, and 2. we don’t know that we can have healthy children. To hear over and over again that #2 is not true in the slightest is just the best thing in the world.
Chris and I are in the process of researching doctors, methods, embryologists and a whole assortment of issues concerning how you do this. Some things we have learned so far:
1. This is a profit driven part of the medical community. These are elective medical procedures so some of these guys tend to be used car salesmen of sorts in how they manage their offices. That is a little bit tough to wrap your brain around. I know this is a business to them, but this is my family. My children. I am trying to get into the flow of it, and learn to play the game. Man, I wish I paid better attention in high school biology. It would certainly make this whole thing easier in terms of learning what is involved quicker which helps lead to knowing what questions to ask, and what I should be fighting for.
2. They are not necessarily the happiest of places. These miracle workers are making couple’s dreams come true, yes, but at the same time, no one really comes here joyfully. There is an air of desperation and defeat. The typical clientele has come here because either they have been trying to get pregnant for a very long time and can’t, and meanwhile has watched all of their friends and relatives get pregnant around them. Or there are others like us that have suffered devastating losses through either multiple miscarriages, or loss of actual children, again, while watching their friends and relatives do it so easily. I don’t envy these guys and the work they do. It is incredible what modern science can accomplish, but holy cow, the emotional side of this is pretty profound.
3. Everyone has a different philosophy on how it should be done. We are currently stuck in analysis paralysis. We have no idea what’s the best way to go. We have talked to two different doctors, and both have completely different viewpoints on what we should be doing:
Doctor #1 – He takes into consideration our long term goals as a family, and is aggressive about taking out enough eggs to create enough embryos so that we have enough to account for at least 25% of them being sick, others that would be immature and not be suitable for implantation, others that would die off when subjected to the genetic testing, etc, so that we end up with enough to get me pregnant this time, and another time in the future if we so choose. I would be subjected to about 3 rounds of egg retrieval, or 3 months of treatment. That means 3 months of the hormone injections, 3 outpatient surgical procedures to collect the eggs, lots of monitoring and being in and out of their office and such. The most expensive part of this is the collection of eggs, fertilizing them, turning them into embryos. If we go this route, then we would bear all of the worst of the cost up front, and be set up for the long haul, whatever we want for our family.
Doctor #2 – She says that she strongly suggests only doing one round of egg retrieval. She says that being on these hormone injections along with the outpatient procedure to collect the eggs is no small thing, and that it can have a severe impact on my overall mental health. Given the fact that I am grieving the loss of my son, this is something we should consider strongly. Another reason they do it this way with only one round of retrieval is that when you freeze and thaw out embryos, you lose some of the success rate. It is just hard on them to weather it. Some will not survive it, and some will not be as good when implanted. The best way is if you can avoid that whole process entirely and implant them when they are fresh. If there are any leftover, then they will freeze them, but with the understanding that they will not be as good after having been frozen. There are, to date, no tests showing that it causes any problems with the children later down the road. It is just during implantation that you see problems with survival.
There is a third doctor in town that we have yet to consult. He is by far the most expensive (from what we have heard). We need to make an appointment to go talk to him and see what his thing is. I am scared he will have a completely different viewpoint that the other two doctors, which would make this whole thing even more confusing.
4. No doctor is willing to say any disparaging comments towards another doctor. So, crap. Now what do we do? We have made connections with some really great doctors throughout the course of having Noah, but no one will say anything about who is good or, more importantly, who is bad in this whole thing.
The learning process is ongoing. I will feel a lot better about life in general when we have a plan. This not knowing stuff is really eating at me. I have been told by these doctors that we can’t implant an embryo until it has been a full six months since Noah was born to give my uterus enough time to recover, and to get my hormones back on track, which will be January, so we do have some time. Any thoughts on this? I’d love to hear it.
On June 26, 2009, after a wonderful pregnancy, I gave birth to a beautiful baby boy whom we named Noah. He was a joy. He was beautiful and perfect and we were just beside ourselves with how amazing parenthood was. We had waited seven years to have a baby. Why? Because we wanted to. We enjoyed having life be all about us for a very long while. Once baby fever hit, and Noah arrived, we just couldn't believe we had denied ourselves this kind of love for so long.
Suddenly and unexpectedly, on the evening of Noah's fourth day of life, he passed away. We had no idea what had just happened. The day after he passed, we learned that he suffered from a very rare genetic metabolic disorder called MCADD. The symptoms were very subtle - he had been seen by at least four doctors, and countless other nurses, lactation experts, and others within the medical community during his four days of life and no one saw a thing. From everyone's examinations, we had a perfectly healthy and normal baby boy.
We have since been through genetic counseling, and have learned that both Chris and I are carriers of genetic defect, and therefore have a 25% chance of creating another sick child. We have a 50% chance of creating a child that is a carrier of the illness, and a 25% chance that we end up with a child that has no incidence of MCADD whatsoever. To help guarantee that we do not suffer this agony again, we are pursuing in vitro fertilization. They can test the embryos before they are implanted to tell which ones are the healthy ones and which ones are not. This whole journey learning about the world of infertility is stressful, confusing, invasive, expensive, exciting, scary, and overwhelming, but worth it. I am learning a lot and have a lot of thoughts and emotions to process through the whole thing. This blog serves as an outlet for all of the above.
At the end of the day, it all started with Noah, and how he showed Chris and I a new kind of love that we never even knew existed. We are carrying it forward to his future siblings. Come join in this amazing journey with us.