Take Action: Oppose SB 169

I received an email from the American Fertility Association today about legislation that could impact fertility treatments. This particular legislation is in Georgia, so please ask your Georgia friends to take action this week! If made into law, the bill will limit fertility treatment for many couples along with taking away the right for parents to choose what to do with any frozen embryos after they are done building their family. Full details at the link below.

http://www.resolve.org/site/PageServer?pagename=ta_stleg_home

A year since IVF

Happy Valentines Day!

It suddenly occurred to me today that it's been a year ago today since my retrieval for IVF. I remember the anesthetologist making some comment about a Valentines baby. If that procedure would have worked, our baby would have come home around November. As much as we wanted each treatment to work & to be the last, I'm glad our baby will be born in the spring instead of right before the holidays!

Video Parade

Almost there.. just a few more days til HPT...

Here a lady gives herself antagon. These are easy b/c they are prefilled & in a nice glass syringe. But the meds sting. And I just noticed she didn't push the air out first. You're supposed to hold it up and push out the air bubbles. This one comes with a giant airbubble at the top and it's easy in this glass syringe to accidently push it too far. I've squirted a little of the medicine out before when I did it too fast. I've taken this in both IUI & IVF cycles. This cycle I took this the two nights before trigger shot.

Shooting up

Here's a chic giving herself a Follistim injection using a Follistim pen. This is the drug I used in both IUI & IVF. I never could hold the pen the way she is (which is how they taught us to). Just seemed too much like a jabbing motion, I hold the pen closer to the needle. I love how excited she is at the end that she did it. Superquick.



Ok so I really want to show two videos today. But this lady in the second one has a pretty foul mouth on her so I'm only going to link to it, instead of embeding, and it's up to you if you want to watch it or not. The reason I like it though is because she gets herself all 'siked out'. I've done this so many times! Over the last year I've taken dozens of these little shots, but every now & then you freak yourself out. Karla shoots up!

Big box of meds

It's odd getting a big box of medicine delivered to the door (yes I just ordered yesterday after my appt, but these specialist pharmacies understand the urgency & schedules of IUI/IVF). And it was over a 100 degrees today again so I'm glad I was here to bring it in right away. (Most of mine has to be refrigerated). They pack it pretty good with icepacks & special bags, but at these temps it's better not to take the chance.

Up through today, I'd been using leftover meds from IVF (besides a few Rxs I had to fill here & there). But when RE said to up the dose, I knew I didn't have enough left to get through this round. I had to order more from the IVF pharmacy and man is it expensive. After insurance, it was still $200. I was glad to see when I opened it that it was way more than I'd need for this one cycle. So that helped a little with the 'sticker shock'. It's more than enough to get me through at least one more cycle if need be. (Hopefully not necessary though!). I was disappointed I didn't get a sharps container like with my last shipment. Mine is full, so next time I'll have to remember to ask them about that.

Here we go again... (aka IUI #5)

Yep it's already time for another go. Thats one thing with infertility, you barely get time to let the last negative test (hpt or beta) sink in before it's time to move on (unless it's IVF, they make you wait after that).

This morning, after my scan, Dr Meyer suggested we change my protocol for this cycle. So, no more Femara. Instead, I'll start the Follistim earlier (day 3 instead of 7) and up the dose. Taking 75IUs tonight and then 50 until I go back next Wed (15th). I had been taking only 37.5IUs. This is a more agreesive schedule, but not too much. After 2 previous cycles with the same doses, he didn't think it made any sense to try another without making changes. He said I could try another if I wanted to, but I'm in agreement we shouldn't keep trying the exact same thing over & over.

Reproductive Immunology

Today a friend in the UK (whom I "met" via fertility message boards), posted a link to an article in a UK newspaper about a treatment she is starting. I wanted to pass this article along, because I plan to pursue immune testing as a possibility if we have to resort to IVF again.

Dr. Beer was a pioneer in the field of Reproductive Immunology and I talked a little about his book (Is your Body Baby Friendly?) in a previous post. His book is very new, actually published after I started my fertility journey. This was one of the first books on IVF that I found to provide real explanations for couples who continue to have infertility & IVF failures. (You should see all the post-it notes & highlighting in my copy). Most of the patients who go to Dr. Beer's facility (Dr Beer has passed away but the center he founded still provides these treatments) have usually already had 3 or more IVF failures or miscarriages. The article explains in fairly simple terms what the theories & treatments are to prevent another failure so I won't try to explain it myself. I hope to have the testing done before we make another IVF attempt (if IUI does not work within the next two tries, then we will have to move on to IVF again). Unfortunately, Dr. Beers ideas are not accepted by the entire medical community.. so I do not know how feasible it will be. But in my opinion, it would be better to have the tests done than keep trying if something is wrong. Even if all the tests come back all negative, at least you know that is not the cause of your failed attempts. One of the biggest frustrations with infertility is not knowing (at least for me anyway).

The woman in this article wrote about an 8 page introduction in Dr. Beer's book..
Daily Mail - My body tried to kill my baby

I also listed a few quotes from the book.

"Pregnancy risk assessment is advocated in many areas of medicine. We must now add 'immune risk assessment' to find the unfortunate people who end up spending a fortune in money, time and emotion, and get nothing in return. I strongly believe that we can identify these couples even before a first IVF failure."

"Unfortunately, if you mention these ideas to your doctor you must still be prepared for them to laugh at you and not take you seriously. Yet these same doctors would take autoimmunity seriously if it affected your thyroid gland, insulin-producing cells and joints. It's only infertility and recurrent losses that they consider have no biological causes outside of those that can be treated with fertility drugs."

"Studies have reported that many couples consider infertility to be at least as, or more stressful than divorce or the death of a loved one, with up to half of infertile women feeling depressed and anxious" (I've also heard it compared to the stress of dealing with cancer).

Tatooine

May the force be with you.

I'm not really going to write about Star Wars on my fertilty blog, but thought Tatooine was a good title for this entry. Tatooine is the home planet of Anakin & Luke Skywalker (and Princess Leia) and I've always thought it was a funny name for a planet. You'd think everyone on the planet would be covered in tattoos. (Yes I'm a dork, and I'm ok with that).

Which brings me to my subject, my new tattoo. Yep, for those of you that didn't know, I got a tattoo. I've had a lot of people ask me why. Why now (at 28 years old)? Why that? Why there? (Esp. family) I don't promise to answer all of those questions now (maybe not ever), but I will talk about it a little.

It is my first & only. It's a small tattoo but readily visible. It's about an inch wide decorative eternity symbol in all black. (And I'm going to go back to get it touched up a little). I got it on June 16th at Monkey Ink in Garner and Jack went with me. Yes, it hurt, but not that bad. After all the needles & pain with IUI/IVF, this was not a big deal plus it only took about 2 minutes.

Some may think that both the timing & the design are random. But they'd be wrong. I've wanted a tattoo for many years but various things stopped me (money, design, not wanting it to show in my wedding dress one day, etc). I saw this design several months ago and thought it would make a good tattoo so I kept it in mind. The cysts that I had on my ovaries made this month a good time (can't get a tattoo while you are pregnant or think you are). The more I thought about the design, the more I thought the symbol could mean a lot to me. (Plus it looks cool). I'm not going to go into what it means to me, but I will say it's related to where I am in my life and in my illness (yes infertility is an illness). So it very much is not random.

I don't expect everyone to understand, approve, or like it. And that's ok. I got the tattoo for me. And I put it on my wrist because that is where I liked it.

my new doc

Carolina Conceptions is a new clinic in our area that I mentioned in an earlier post. Before I even left my apppointment, I'd pretty much made up my mind that Dr. Meyer was my new doctor and that I was not going back to see Dr. Toma! It is in Raleigh so it's a slightly longer drive but well worth it. The facility is brand new (still have all sorts of construction in the building and the parking lots not even finished) but the drs have plenty of experience.

After just a short wait, the nurse ushered me back into Dr. Meyers office (brownie points for him already being in the room instead of sending me to a empty room to wait more). Dr. Meyer is a very pleasant person and is happy to work with you on a treatment plan. Since I didn't have my medical records from NCCRM (see previous post for that rant), I had typed up all my IUI & IVF results (thankfully I had all that info here on my blog). That info plus the treatment chart (that was my 'treatment bible' through IVF) was enough information for him to determine what steps to take next.

I was thrilled when he said that he thought I could get pregnant without doing IVF. There's about a zillion reasons why that made me happy, but primarily money, time & pain in that order. So he wanted to try something he called sequential therapy IUI. Basically it's just a combo of the type of IUI that I did before, plus the same injectable fertility drug I took during IVF.

He also said I do not have to take metformin (glucophage) anymore! This was the best news I could have gotten. I had been complaining since Sept. about the awful side effects of this drug but my old RE basically said 'get used to it'. Dr. Meyer said we could try Avandia instead and that it had little side effects.

So the waiting game begins... wait for a period to start. He actually said I could take prometrium (that I have left over from IVF.. thats one really great thing about this doc, he's trying to maximize the leftover drugs that I've already paid for!). The prometrium will start my cycle but I'm waiting until I get back from an upcoming business trip (to Minnesota) to make sure that we have no conflicts with the travel.

it shouldnt be so hard

Get a copy of your medical records before your appointment.

Sounds easy right? Wrong! Now I'm not a novice at medical run-around, but this is just ridiculous.

After our less than thrilling appointment with our RE on Monday, DH & I debated various options. Since I'm the one enduring the daily hardships during treatment, DH is pretty much leaving the final say to me. So, I decided that we needed a second opinion. I already had an RE in mind since I've done plenty of research on the topic since our initial IVF education back in December. Dr. Meyer is in Raleigh at a new clinic that just opened last year (yea I know, it's new.. are they good enough, can we trust them... I'm not going into all that right now, maybe another post, you can read all about their clinic & make that call for yourselves. I will say the co-founders used to be directors of both the Duke & UNC IVF programs). I was thrilled to find that Carolina Conceptions could get me in to see Dr. Meyer in less than a week!

Okay so that all seems good so far. Here's where it got frustrating. I need to take my medical records to CC in order for the RE to give a second opinion. So I call NCCRM yesterday trying to get the process started (only 3 days after the appt that led to our decision to try another clinic). Finally today I get instructions on how to get my records. First I need to fill out a release form. Done. Then, NCCRM contracts out their copy service to a company that comes only once a week (Wednesdays of course, so the day before I called). So I have to wait until next Wed. Oh and by the way, then you call the contracted company on Friday to find out when you can get the copies. So that would put us at 7 business days later & still no copies. Then, you finally get the copies the next week around Wednesday. So I called the contract company hoping I could get some sort of expedited service (and expecting an extra fee, thats okay). Nope, they don't have anything like that and they wouldn't even commit to the Wed date that the dr office gave me. So I made the initial request on 3/22, and by sometime around maybe possibly 4/4, I might have my records for a doctor appt that is on 3/30.

And what really gets me - my file is sitting in a filing cabinet right now. No one is using it. And they have a copier.. I've seen it. I'd even make the copies myself & still pay the copy fee.. I just want the information they are holding hostage.

IVF consult

DH & I showed up at the dr for our 4PM appt. 45 mins later we finally got to see the RE. Then he rushed me with all my questions. He kept checking his cell phone & once said 'you about done with all those questions?'. UGH... what a jerk. We were only in there maybe 10-15 minutes tops.

Most of my questions were shrugged off, indicating that there is nothing we could have done different & there are no other tests we should do to look for any other problems. Just try again. He said that I stimulated like their 21-yr old egg donors (I guess that was supposed to make me feel better?). Of course stimming that way did us no good since my levels went too high (as you know already if you've been following along on this blog). The only explanation he would give as to the failure of this cycle was the possibility that 'coasting' (no ovulation induction meds) for so long prior to retrieval and/or that I had not been taking my full dose of glucophage could have reduced the quality of the eggs. I have several issues with this statement. First, we had no idea until today that there had been anything wrong with the eggs. All he could tell us was that we had 'slow embryonic development' (though even that confuses me since 2 got to blastocyst stage on day 5 which is typical.. did they start slow & then catch up?). Second & third, I had informed the nurses of my difficulty in taking the glucophage as it made me sick & he never tested me for insulin resistance (not all PCOS patients are insulin resistant & only need glucophage if insulin resistant).

For the next try, he had only a few changes to make. Take birth control longer (20-25 days instead of the 15 or so I did last time). He is also going to start me off with FSH of 100 (started at 150 last time) and Lupron of 5 (10 b4) and just try again. He also said to make sure to take the full dose, at least during the stim phase if I can't manage it the rest of the time. (Glucophage gives me GI issues at full dose, or even at smaller doses sometimes).

So, just try again. Now that he's seen how my body reacts, he says he knows what doses to use next time. What if these doses are not enough? Plus, the problem with that mentality is that we only have one more try that our insurance will cover. And we don't have $10-15k to pay for another try ourselves. So I'm very interested in doing all we can to increase our chance of success at this try. I'm not in a hurry to do it right away.. if time is what we need to be better prepared then fine by us.

lots of questions

Man is my RE in for a surprise on Monday! Usually when I see him, I listen to everything that he has to say but I don't really have many (if any) questions. Now that I've had some time to think about the previous IVF cycle, plus read all these books lately... I've got a nice list of questions. I'm up to about 25 questions so far on my list!

Is Your Body Baby-Friendly?

This week I received my Amazon order with several IVF books. I'll review them here as I read them. But I wanted to make a note on this book now.

Is Your Body Baby-Friendly? By Alan Beer

I was surprised at the size of this book. It is nearly 500 pages! Skimming through it, I found that nearly 1/2 of the book consists of notes. The notes provide supporting documentation for the many statements through the first half of the book. Most of us non-medical types will have no interest in referring back to that section. From the few other parts I've skimmed so far, I see that this is not going to be an easy read. Though many of the medical terms are explained as simply as possible, it is still rather in-depth and highly technical.

For any of my friends concerned about miscarriage or IVF failure, you can borrow this book. If I had skimmed the book at a bookstore/library, I would not have purchased one for myself.

more books

Below are a couple other books I've ordered but know very little about. These were not recommended to me, I found them on Amazon while searching. I purchased these based on the summary & reviews on Amazon. Hopefully these will prove as helpful as the others have been.

1 of: The Couple's Guide to In Vitro Fertilization: Everything You Need to Know to Maximize Your Chances of Success [Paperback] By: Liza Charlesworth (Author)


1 of: Infertility Survival Handbook [Paperback] By: Elizabeth Swire-Falker (Author)

infertility books

warning - long post
----
I've started reading a lot on infertility though recently I've been focusing on the emotional/mental side. Intially most of my personal research was online (faster, easier, free!) though I've read a few books too. I'm pretty much through all the basics of fertility treatments, so I've skipped to the more in-depth IVF books. For anyone going through fertility issues or close to someone going through it.. I recommend the following books. I have also ordered a few others. I'll update later once I've read those. (These link to Amazon just b/c I copied the titles from there to speed up writing).

1 - Conquering Infertility: Dr. Alice Domar's Mind/Body Guide to Enhancing... By: Alice D. Domar, Alice Lesch Kelly
This one was recommended to me by my therapist. I started seeing her b/c infertility is one of her specialties and around last fall I started having a harder time dealing with my feelings about this process. She recommended this book in one of our first sessions. I skipped around a lot as I read this.. depending on where we were in our cycles. There are a lot of coping skills that are mind/body techniques (google mind body medicine if you want to learn more) plus it shares a lot of stories from other women. I suggest reading sections as they apply to you (I think it would be very stressful and upsetting to read the chapter "When Miracles Don't Happen:Coping when Treatment Fails" in the midst of treatment. But I flipped straight to that chapter the day after finding out our IVF cycle did not work). I also have found this book to be the kind of book that you want to reread, specifically if you are having trouble in certain areas. The chapter titles are very helpful in directing you to sections you need most. The day I got the book, I skipped ahead to 2 chapters.. first "Coping When Everyone But You Has a Baby" and then "Infertility and your Career". At that time, those were the two areas I was struggling with most. I definitely recommend this one regardless of where you are in your fertility struggles. It is not IVF specific.

2 - Nurturing Yourself Through IVF: Improve Your Experience, Maximize Your Odds of Success [Paperback] By: Lynn Daley (Author)
I found this one on Amazon as I searched for books that were more focused on IVF. Many of the other books I had found were too basic. IVF is one of the more advanced infertility treatments and as such, it can be more difficult to deal with both the physical & emotional aspects. I wasn't sure what to expect from this one but was pleased with it. Don't be disappointed when you see it, as I was initially, it is very short but worthwhile. Daley expands on (and references frequently) Domar's concepts from Conquering Infertility. Though this one does focus on IVF, I would say most of the advice can be used at any stage of infertility. I wish I'd found this one just before starting IVF instead of after one full cycle. In this case, the author is neither a doctor or psychologist, but just a regular person who went through IVF several times. She talks a lot about both her own experiences and those of other women she met along the way. Not everything in the book will apply to all people (I found I did not relate one iota to the section on superstition, but apparently some women do become superstitious during this process) but you should find that the majority of it is very helpful. She focuses on putting yourself first, 'editing your world' (such as avoiding baby showers if they make you uncomfortable), and the mind-body connection. This is again one that is good to read once, but more useful to reread & reference as needed. She also references lots of other resources along the way.

3 - Is Your Body Baby-Friendly?: Unexplained Infertility, Miscarriage & IVF Failure - Explained and Treated [Paperback] By: Alan E. Beer (Author)

I found out about this book from my online friends, specifically from the leader of a bulletin board that I frequent. [Sidebar: I've read lots of other message boards in the past but found they became an obsession, not only for me, but for the other women. When I was going through the last 3 or 4 rounds of Clomid, I joined a board focusing on Clomid. Though I thought having other women in the same boat to talk to would be helpful (and it usually is), this was not! These women posted to the board at least daily, but often more than that. During a Clomid cycle, you must take medicine for several days (for me it was days 3-7) and then you 'try' at home during a certain timeframe. Then you wait. And wait. If you are reading and posting daily, you will go crazy during a Clomid cycle. Though you can never truly forget about trying to conceive, I found during Clomid I had to distract myself. Reading & responding to those posts so frequently actually made me feel worse instead of better. Point of the story is that online message/bulletin boards are useful, but find one that is helpful for you, if you feel worse after visiting your board, then maybe you should move on.] Anyway, the leader of this board has had several (about 5 I think) failed IVF cycles and is a few years younger than me (this is not the norm with the women I meet.. usually they are older than me). She has reached a point where they cannot figure out why IVF will not work. She's going to a specialist in IVF failures now and one of his colleagues, Alan Beer, wrote this book and was founder of Alan E Beer Center of Reproductive Immunology and Genetics. She caught my attention when she mentioned a family history of Rheumatoid Arthritis as my DF was diagnosed with RA in his early forties. I've not received this one yet (should be here any day now) and I'm anxiously awaiting it. Beer focuses on the 5 types of immune system responses that can cause reproductive failure (including IVF failure & miscarriage). This link was also mentioned in "Nurturing Yourself Through IVF" (previous review). I'm hoping to get through this one before our next consult with the RE. At the very least, I will be asking him about this type of testing. I don't want to go another IVF cycle without at least testing for this immune problem in case it could help us with treatment.

moving on..

We've made an appt. with the RE to see what our next steps will be. When we had our first consult with Dr Toma, we came up with a treatment plan that included 2 IUI cycles, 2 'fresh' IVF cycles and then 2 'frozen' IVF cycles (sometimes called FET). Since we've done 2 IUIs, and 1 IVF, we expect to give IVF another try. Unless there is some medical reason why he changes his recommendation. So, we meet with him on 3/19.

last acupuncture

I had my last IVF related acupuncture appt today. This was to help with implantation. So we've done about everything we can do to make sure this first IVF round works! Funny thing was this time he put a needle right between by eyebrows, that was a little odd.

I'll post my beta results Saturday evening. I'm going to find out the results right as I leave for a girlfriends wedding shower, so I won't post right away.

more medicines

Today I had more bw done & found my progesterone level is 33. I'm guessing that's not where they wanted it b/c they added Prometrium (another form of progesterone, though this one is not in a shot) to my already confusing medicine schedule. This one they've got me using 3x/day. Though at least I'm not wasting any of my money, I had been wondering when that big bottle of Prometrium would be used or if I should not have gotten it. (The way the IVF meds work, you have all of the meds delivered at the beginning of the cycle. So you open this giant box full of medicines, applicators, syringes, needles and then you wonder what the heck you got yourself into!)

They want me back for bw next Sat 3/3. This is the one we've been working towards. They are going to check my progesterone level again, but more importantly they are going to do my first beta! They'll do three betas and that'll let us know if we are pregnant!

Retrieval & transfer

I've been away from my computer for roughly a week & a half, I think that's some kind of record for me. I've been trying to rest just like the doctors expect so that everything will go right with this first round of IVF!

~ RETRIEVAL 2/14/07~

We had our retrieval on Valentine's Day in the early AM. I got a little nervous just as a I was in the back room waiting for my turn (someone else had to be there even earlier than us for their retrieval). But it was no big deal, just a little prick to numb me up for the IV. Then once the IV was in and they were ready, I was out like a light. The last thing I said (or remember saying anyway) is 'that was fast'. I had started to feeel the anesthesia as soon as he said he'd started it. The procedure takes about 10 mins itself, it's all the other hoopla that takes awhile. I got a little nauseated from the anesthesia but was sent on my way pretty soon. Jack got me home & made sure I was all comfy & following dr orders. They had gotten 20 eggs from me which is really good!

DM came by shortly after we got home and she helped DH to take care of me. I was surprised to find the worst part was the bloating & gas. It was miserable! It went away very very slowly & really was uncomfortable through Friday.

~ TRANSFER 2/19/07 ~

Our transfer had been tentatively scheduled for Saturday morning. However, we heard from the embryologist on Fri that he wanted to wait until Monday. Of the 20 eggs, 18 were usuable (1 not viable & 1 was immature). They performed ICSI on all 18 and 16 of them fertilized normally. As of Fri, they were ranging from 2-5 cells (that was Day 2) and he felt they would benefit from being cultured thru the weekend. Sat he called us again saying that we'd transfer at 2:30 on Monday and that 9-10 of our embies were looking 'really good' (Day 3).

I felt a lot better through the weekend, having finally been able to get rid of the majority of the bloating and get around better. DM had stayed thru Fri AM and then was just me & DH for the weekend. By then I really didn't need much, was just anxious for Monday to come.

We started off at the acupuncture clinic a few buildings down. My acupuncturist did some needling to prepare my body for the transfer. Then we headed over to NCCRM.

Compared to the retrieval (and its afteraffects), the transfer was a cakewalk. First they showed us the embryos in the incubator (thru a microscope), said they wanted to transfer THREE embryos! and then got me ready for transfer. They got the US ready so the dr could see what he was doing, then they transferred our babies thru a cathedar into my uterus. There was no pain (all I had was a valium) and it was over quick. Then DH & I just chatted while I laid there for 15 minutes.

2 of the 3 embies were blastocysts which is supposed to be a good thing. So we really are excited and hoping to find that I'm pregnant! In the picture they gave us, only one (lower middle) was actually a blastocyst at the time. I think he said they had taken this picture Monday morning and that the one on the right became a blastocyst during the day before the transfer.

Afterward, we went back over for more acupuncture & then on home. I was on bedrest through Thursday and then still resting today though I've been up & about. I go back tomorrow to have my progesterone levels checked & then on 3/5 have the first beta test. (That's when we find out if I'm preggo or not). Though they do 3 tests and want to see the numbers rising, so I'm not sure if they consider us pregnant for sure until the 3rd beta.

IVF schedule

I got my IVF schedule today. :) It's still likely to change a little depending on the various tests, but it looks like the retrieval (getting the eggs) will be around mid-Feb and then the transfer (putting 'em back) would be 3 days later. I might be a bit of an emotional roller-coaster the next two months.. be afraid, be very afraid. LOL!