Bull in the China Shop

I have once again let that bull in my china shop. IVF #3 has started. Eeeep! 

I willingly have begun this process again. The bull (our ivf cycle) is full of unknowns and comes blundering into my shop, taking over my attention/energy in this all encompassing force to be reckoned with. And at any moment... something might break. The shop is me... my body, spirit, heart and life. And frankly... I am fragile. Just like china in a shop. After all the ups and downs associated with IF and the years of trying/cycling, I am fragile. Letting that bull back into my shop is unnerving, scary and bound for destruction. One way or another. 

I am hoping this cycle... the bull brings me destruction of my current barren status. That would be fabulous. 

This is my current favorite metaphor I am relating to IVF and cycling. Represents so perfectly how I feel. 

Outside of having an aggressive, domineering and potentially harmful bovine in my fragile, been hurt before and scared self... I am excited about the cycle. Things just seem fresh and new. New cycle, new doctor, different protocol, new drugs, new diagnosis all falling in a new year. That has got to be lucky, no? 

Had my suppression check yesterday, after a week on Lupron, and all looked great! Started stims last night! I am on Follistim (250 units), Luveris (1 ampule), Lupron (10 units), Lovenox (for MTHFR), MetaNx (Pill-for MTHFR), Dexamethasone (pill) and my normal other supplements/vitamins daily. The Follistim and Luveris dosages stay as listed till my first monitoring appointment on Thursday. Shots went great last night but I really woke up with a headache today. Not sure which of the drugs to blame (if any) but we shall see if it persists. 

Looking forward to the process that will be unfolding over the next few weeks. Thanks for listening and being a special part of my journey. 

Medications and MTHFR

IVF Cycle #3 Drugs

Awwww the familiar and comforting sight of injectables! 

As you can see... my medications have arrived! This means we are very close. Within weeks actually (hopefully). 

Crazy to think it has been almost exactly 3 months since I have had to give myself a shot (since IVF #2 ended)! Seemed like some fuzzy memory that happened ages ago to someone else... And yet... opening the box... it all came flooding back. The shots, the medicine "mixing", the schedule, the worrying about where I would be when it was time to give myself a shot, the appointments, the "wand", the blood draws and waiting for the phone to ring. These are just the exterior/safe flashbacks, the emotional flashbacks I am saving for another post. Regardless, ready to start all of the above all over again. For the most part. 

I do feel a bit out of touch with this cycle already since I am on a brand new protocol (not that I have actually seen my protocol on paper yet) with all new drugs! I have never taken Follistim or Luverius before and what the heck do I even do with this pen? Hehe. I have previously been a Gonal F and Menopur girl, so these are all new to me.

From what I understand... I will be on a Long Lupron Protocol. 

My drugs of choice(?) this cycle include but are not limited to: 

Lupron

Follistim

Luveris

Novarel

Progesterone in Oil (PIO) 

Vivelle Patches

Doxycycline (oral)

Dexamethasone (oral)

Medrol (oral)

Norethindrone/Aygestin (oral)

Baby Aspirin

Those are in addition to my normal daily drug cocktail of: 

Metformin (2000mg)

MetanX

Prenatal 

Inositol (vitamin supplement)

CoQ10 (vitamin supplement)

L-Arginine (vitamin supplement)

Wow. Listing that all out makes me feel like a junkie.  :) 

I started my first oral pill for the upcoming cycle on Monday. Norethindrone (Aygestin) twice a day for 9 days. 

I start my Lupron injections this coming Monday (1/16). 10 units a night. 

My next appointment and suppression check is on 1/23 and from there I am in the dark. I suppose I will get a calendar at that point? Not really sure, since we are dealing with a new office and unfamiliar protocol, what comes next. The paperwork I have ends with “If tests show adequate suppression, you will be ready to start the stimulation phase”. Like immediately? So starting stims that night? or the next night? Who knows. I am trying to not over-obsess about the absence of a detailed and beautiful calendar (of the next month of my life). I, of course, already have a made-up retrieval date, transfer date, beta date and due date in my head. How this is possible for a cycle I have no concept of at this point... I have no clue. It’s a sickness. Thus the life of a control freak infertile.   

Also wanted to delve further into the MTHFR mutation I had mentioned in my last post. Looks like there are a bunch of us out there with it. I did find some more information. Seems like there are many different ways of managing this diagnosis based on your particular doctor... treatment is also based on your specific variation of the mutation. There are 5 different variations of the mutation. I think it is important for you to know your specific mutation and implications for your particular version (I have #2 listed below - Compound Heterozygous) I found a well written MTHFR Tutorial on a fellow bloggers site and will paste the info here. 

Link to the original post.

MTHFR Gene Mutation

What is it?
The gene MTHFR (Methylenetetrahydofolate Reductase) encodes the protein MTHFR. Its job is to convert one form of folate (5,10-Methylenetetrahydofolate) to another form of folate (5-Methyltetrahydrofolate). 5-Methyltetrahydrofolate is used to convert Homocysteine (a “bad” amino acid) to Methionine (a “good” amino acid). Therefore, if MTHFR is not doing its job as well, homocysteine will not be converted to Methionine and will be elevated in plasma. Elevated Homocysteine has been associated with a variety of multi-factorial diseases.

Essentially what this means is that the genes that instruct MTHFR to convert homocysteine to Methionine are mutated and may not be capable of doing this important function. MTHFR is an enzyme that converts Homocysteine to an essential amino acid (Methionine). When the genes are mutated you may be lacking this enzyme. Your Homocysteine levels can possibly climb making the blood clot. Some doctors don’t check for the MTHFR mutations and rely only on homocysteine levels. This isn’t as reliable as testing for the mutations, because Homocysteine levels fluctuate (if you catch your level on a normal day, you may go undiagnosed).

What Type Do I Have?
With MTHFR, there are two different genes identified for this mutation, and it’s possible to be “heterozygous,” “compound heterozygous,” or “homozygous.” The MTHFR gene mutation has varying degrees of possible implications. The order of potential severity from most to least is:
1. C677T & C677T (Two C Copies – C677T Homozygous)
2. C677T & A1298C (One Copy of Each The C & A – Compound Heterozygous)
3. C677T (One C Copy – C677T Heterozygous)
4. A1298C & A1298C (Two A Copies – A1298C Homozygous)
5. A1298C (One A Copy – A1298C Heterozygous)

The MTHFR mutation is fairly common in the general population. Approximately 44% of the population is heterozygous and another approximate 12% are homozygous for the MTHFR mutation. Compound heterozygous and homozygous MTHFR have the highest incidences of being linked to implantation failure, late term miscarriages, specific birth defects and overall vascular health. Whichever type of MTHFR you have, it should not be discounted, particularly if there is a personal or family history of any such incidences.

What Are the Implications?
Any and all of the mutations can affect homocysteine levels, but there is much dispute as to whether elevated homocysteine levels are actually needed in order for MTHFR to cause medical complications. Many other MTHFR patients have normal homocysteine levels; yet have had implantation problems, m/c(s), and/or stillbirth(s) due to clotting problems. So it is important to find out your Homocysteine levels (although again, normal doesn’t necessarily mean all is well). This is a serious field and MTHFR is a serious condition, so consulting an expert is wise.

Research shows that high homocysteine levels and/or those with the mutation show a higher propensity for thrombosis (blood clots), arteriosclerosis (hardening of arteries), Alzheimer’s, stroke, heart attack, Fibromyalgia, migraines (especially with “Aura” migraines), osteoporotic fractures, bone marrow disorders and for those of child bearing years, it has found to be connected to higher incidences of down’s syndrome, spina bifida, other neural tube defects, trisomy, miscarriage, stillbirth, implantation failure, placental abruption, preeclampsia, higher incidences of autism, amongst others. Additionally, if you test positive you may want to have your parents, siblings, and any children you may already have tested, as well. There are a few positives to this disorder. Because folate is necessary for cellular division, there is support that shows having this disorder can actually help keep certain types of cancer cells from multiplying as rapidly, so there are some benefits from having this mutation.

Treatment?
Many doctors prescribe Folgard (or MetanX), which is a prescription vitamin supplement containing high levels of folic acid, B12 and B6. These vitamins are what the body essentially needs to convert Homocysteine to Methionine. To put this into perspective, the average multivitamin contains 400 mcgs , most prenatals have 800mcgs of Folic Acid (200% of the normal daily value). Those that are compound heterozygous and those that are homozygous for the mutation are recommended taking 5 mgs. of Folic Acid/B vitamins (12 times the average multi-vitamin and 6 times more than prenatals). It is also recommended to begin taking a low dose (LD) aspirin (81 mgs) once a day, every day, for the rest of your life.

For those undergoing fertility treatments, often times the treatment includes Lovenox (low molecular weight heparin) or Heparin (both are anti-coagulants) during the cycle. If you have a history of implantation failure or early miscarriage, it is becoming more acceptable to use the protocol established by the well-respected Reproductive Immunologist Dr. Beers by beginning Lovenox (40mg/once a day) on cycle day 6 and continuing throughout the cycle. If pregnancy is confirmed, this dosage is likely increased (Typically up to 40mg/twice a day, but potentially higher doses are prescribed dependent upon blood work results since homocysteine levels tend to increase with pregnancy) and usage continues throughout your pregnancy. Approximately two to four weeks prior to birth, the patient is converted to Heparin and continues to take an anti-coagulant for another 6 weeks postpartum (typically switched back to Lovenox). During that time, you will typically be directed to take additional Calcium and Vitamin D, as anti-coagulants can cause bone loss (Heparin more so than Lovenox). Some doctors will recommend a bone scan after use is discontinued to ensure there are no bone density issues. While being treated with an anti-coagulant, you will typically be asked to discontinue taking the 81 mg. baby aspirin since the anti-coagulants will replace the need for the thinning property of the LD aspirin. The FDA has placed Lovenox in the pregnancy category B. Lovenox is not expected to be harmful to an unborn baby. It is not known whether Lovenox passes into breast milk or if it could harm a nursing baby. Do not use Lovenox without telling your doctor if you are breast-feeding a baby. However, many doctors believe it is fine to breastfeed for the 6 weeks postpartum while still receiving Lovenox.


Hope that helps! Sorry for the wall o' text this post became! 

New Year, New Doctor

It’s official, we made the leap to a new RE (fertility doctor). 

So scary to try this with a whole new office, new nurses, etc. 

After our last cycle, we started feeling like it might be time to move on to a different doctor. Not that our old RE had done anything wrong... we just felt like maybe we should look around for someone with better percentages. After spending almost 40k out of pocket (our insurance doesn’t cover IVF) for our first 2 cycles it was time to give someone else a shot. My husband likes to use a gambling analogy... There comes a point when you have been gambling and losing your ass (money) at one table... when you need to pick up what’s left and move it to another table (this is of course because we aren’t done gambling yet). So we are onto a new table. 

This decision wasn’t an easy one. After much research and discussion we decided to get second opinions from two other REs. 

Second Opinion #1 was with a doctor from CCRM (Colorado Center for Reproductive Medicine). We had scheduled this phone interview with them a while ago and had it at the beginning of December. The phone consultation was $250. They had all of our medical records submitted in advance so they knew what they were working with. The doctor himself was informative, educated, funny and nice... that said... I didn’t get an overwhelming sense of “I feel good about my ability to get you a baby”. I don’t know. Maybe I just wanted some kind of hope from him. He mentioned donor eggs and that that should be a possible next step for us. He said he was willing to try with my own eggs since donor eggs will work the same for me today as they will in 5 years. That was hard to hear. I wasn’t prepared for the words donor eggs or for the feeling that using my own eggs was some kind of consolation till the inevitable. Maybe that is a reality for us in the future and if so... it is something I will need to process... but for now... I want to keep trying with my own eggs. Other than that... we love CCRM. They are a well oiled machine and highly successful with difficult cases. That was definitely appealing. What wasn’t appealing was the price. The cost to cycle there is so expensive. We would have to do PDG (since my egg quality is so bad) on the  embryos which means we couldn’t do a fresh transfer. We would have to cycle, retrieve the eggs, pgd biopsy on day 5 and come back a couple months later for a FET. Just seemed like a long process and did I mention expensive? One cycle cost was almost as expensive as the 3 cycle package available with RE #2 below. 

Second Opinion #2 was with a doctor in my Southern California area. Their success percentages were higher than my last RE but not as high as CCRM. The doctor himself was a bit cold, clinical, informative and definitely made a few jabs at my old RE (which wasn’t attractive). The lab is pretty new and state of the art which is something my hubby and I really wanted this time around knowing one of our issues has been embryo quality/health. They also offered a 3 cycle package which we were interested in to help diffuse the cost of future cycles. We of course didn’t buy any kind of package originally because we were going to get pregnant on the first one. Right? Lolz. Anyway, I actually left the consultation and flat out said... we weren’t going to be cycling there. Again... I wasn’t getting any hope from this guy either! All I wanted was for someone to say... “oh yes... I see this all the time... I can make this happen for you two”. I suppose that is not reality. But still. He was pretty cold and not really very like-able. Then... I slept on it... and woke up feeling like I wasn’t paying this guy to be my friend. I wanted a baby, not a new RE friend. If this guy has a better chance of making that happen for me... then I needed to rethink about cycling with him. A bunch of things we wanted in terms of our next cycle this guy had (new lab, good percentages, 3 cycle package, advanced methods for sperm selection, PGD biopsy at day 5 vs. day 3 and he was local).

In the end... we went with the Second Opinion #2 (we are going to call him Dr. Cold). We choose him basically out of convenience (no traveling) and the fact that we could afford multiple cycle with him (if that’s what it took). 

Interesting enough, at the consult with Dr. Cold he had recommended I go through a RPL (recurrent pregnancy loss) panel of blood work. I had really wanted this completed after my recent miscarriage but my old RE hadn’t felt it was necessary. When Dr. Cold suggested it... I jumped at the chance. Guess what... we found something in it. OMG. Could you imagine if we had just kept cycling with the old RE and never knew about this? I was found to be positive for the MTHFR gene mutation. Compound heterozygous - one copy of the C677T mutation and one copy of the A1298C mutation. I am still in the process of learning what all of that means but it is tied to recurrent miscarriage. I understand it has to do with the bodies ability to clot and also process folic acid, B6 and B12. The office immediately called and put me on a prescription for MetanX, which should help my body get the folic acid, B6 and B12 it needs. I imagine we will need to discuss blood thinners, etc when we do get pregnant but for now I am just pleased we know about it... and are doing something for it.  

Needless to say... even if my new doc is Dr. Cold... I am happy he saw a need for additional testing and now we can deal with this next cycle with even more information. 

Still trying to figure out how to let my old RE know we won’t be cycling with them in Feb, Eeeeeep! I love this office and doctor. The whole team is awesome. They have been through so much with me. They hugged me when I got pregnant, hugged me when we lost him/her and were there for me for everything in between. 

As much as I loved the connection with my old RE and his office. I feel good about our choice. Looking forward to my next cycle as it rapidly approaches!

Ready for IVF #3!