Needles and Bruises

Have I ever mentioned how much I hate shots? At least for stims, I use an empty syringe to draw up the mixed medication and the needle is super sharp and slides in like butter. Ganirelix (to prevent me from ovulating) was a pre-filled syringe and that is probably the worst needle. You get to your skin and the needle just stops and you have to literally jab it through. Lovenox (daily blood thinner) isn't quite as bad as Ganirelix but it also has a pretty dull needle that has to really be jabbed into the skin, which of course causes more pain than a sharp needle. Why do pre-filled syringes have such dull needles? I seriously have no idea.

Then we get to the bruising. Last time I was pg and did the blood thinner injections the full 39 wks and my belly was all black, blue, purple and green. This time a nurse told me that I can prevent bruising by not applying any pressure after the injection. I was so excited! I've been doing that every time. I have gauze to wipe up the blood but I don't apply any pressure. Yeah, doesn't work. The left side is lovely shades of blue, green and yellow showing healing and fresh bruises. The right side has some yellow healing bruises along with some bright purple ones. Considering it's a relatively small area of real estate that the injections can go into (about 2 inches on either side of the belly button), the space available becomes even more limited due to the bruising.

But alas, I'm just venting. I know the injections are necessary and I just hope that it's a positive outcome. I'll continue to grin and bear it...with a little side venting every now and then :)

Insurance Companies and IF Etiquette

This one is purely a vent.

Insurance Companies

I pre-registered at the hospital and then got the call that insurance has denied this retrieval and it will cost $2,800 out of pocket. First off, you don't spend $3,800 on Rx and then not do the retrieval, so I'm pretty stuck. I called insurance and they said I already had 4 oocyte (egg) retrievals, which is not true, only 3. Apparently one of the claims in 2008 went through twice and everything has to go to the medical review board. In the meantime, I have to shell out the $2,800 upfront to have the retrieval done. Small glimmer of hope is that since the retrieval will be on a holiday, I have to go the surgery center rather than the usual hospital. Since the surgery center is partially owned by my doc and they know the situation, there's a chance I won't have to pay upfront and can wait for this to all get sorted out. We'll see.

My policy also states that I am allowed 4 oocyte retrievals, then with a live birth up to 2 more. When I asked about this, stating that since I had a live birth even if your records say I had 4 already, I should still be allowed 2 more regardless. Then they started analyzing the actual policy and stated that it's 4 total so this would be my last one covered by insurance. That is clearly not how the policy is written. If this IVF fails, I'm going to need to file an appeal with insurance before we move forward with the next one. The other part is that they asked if I ever submitted paperwork of a live birth. Hmm, didn't you pay for a c-section, newborn screenings and my DS is on the policy? Apparently my RE has to submit stating that the live birth is a direct result of the oocyte retrieval (and I didn't have a surprise pg). Did I mention that as a part of IVF it really helps if you remain stress free, yeah right.

IF Etiquette

I'm a member of RESOLVE the national infertility association and active on their chat boards. One discussion that I recall from the first time I went through infertility treatment was etiquette in the waiting room. Meaning, if you happen to have a child, don't bring them to the waiting room of an IF clinic. That's just rubbing salt into the wound. The first time around, it rarely happened and when it did I just tried to ignore the child. It was too painful. We all understand that going to the OB/GYN for the annual exam will be traumatic. Swollen bellies just staring at you, excited talk about ultrasounds and fetal growth, babies crying, kids all over the place. That's to be expected and you steel your nerves and forge ahead. But at an IF clinic, that's your safe place. The one place that you shouldn't have to look at another child while you mentally spiral downwards in the "what if" game should you never get pregnant.

This time around, I don't think I've ever been in the waiting room without another child there. How did times change this much in 2 years? Why are there so many kids in the waiting room? From the previous discussion, I understand that SAHMs might need to bring their kids since they have no alternative care. But today, a mother, child and grandma show up. And the grandma is talking loud playing with the child. If you look around the room, most eyes are averted and looking at the floor, very actively trying not to look at the reminder of what they might never have.

For me, I will try my hardest to never take my DS to the clinic or the hospital. I just cannot do that to my fellow IF women in pain and anguish. It can take a huge physical and mental toll to be in a situation like that and not feel increased anxiety and stress.

The Cost of Drugs

For my initial set of drugs, I ordered them from IVFMeds in Europe and it's ridiculous how much cheaper they are there than in the US. 1 vial ranges from $30-$40 and I was planning on using 5 vials a day. In the US, 1 vial is $90. While I still spent $2,335 on the initial order, I actually saved about $3,400 by ordering overseas.

Now that I'm on a higher dose (8 vials/day), I need to get refills and can't wait for the overseas delivery time so I have to order in the US. I ran out of Rx insurance coverage in 2007 when I hit my $10,000 lifetime limit, so everything is out of pocket. The US pharmacy I normally use was at $90/vial. My doc's office said they use a different one now and it is actually a bit cheaper. I had to pay a $10 membership fee to get the the reduced rates (whatever) but it was $68/vial of Bravelle and $54.90/vial of Menopur. It's still another $1,236.50 to pay for 14 more vials, but overall I saved another $1,400. I like to focus on the savings and not the money I'm actually paying. I won't calculate the savings I would have had getting it all from Europe.

Bottom line is that these drugs cost a whole lot of money and so far I'm only talking about a few of the injectables. Not even the pills, patches and creams. Dang US pharmaceutical industry overcharging as much as they can on all the drugs!

Waiting until November

Based on my last consult, we realized that since the lab closes for 2-3 weeks each year in December, we can only get in one IVF. Rushing to get it done before we go to Jamaica and either getting a BFN, having a low Beta, or stressing about it wasn't going to do any good. So I'll remain on BCP, have my next hysteroscopy on 10/28, go on vacation and plan to start stims as soon as we get back.

The last day for stims based on the lab closing is 11/29. We should have 8 days of wiggle room in there to make sure we get done. Since I'm always a day 3 transfer, I probably have even 2 more days of wiggle room that they allow for day 5 transfers. What this means is I might be on bedrest during Thanksgiving and we're hosting some of DH's family. Oh well.

Now I need to get moving on working through all the additional drugs I need to order. The Bravelle, Menopur and Antagon are in the house. But I need Lovenox, Prednisone, HCG, Estrogen, antibiotics, valium, and the list goes on and on. I need to pull out my old notes on which pharmacy's had the best rates and get that ready to have all my Rx's called in. Be prepared for some additional venting on how I hate Rx companies over the next few weeks.

While we are definitely not pleased with the waiting game, it has been out of our control based on all the hysteroscopies. Even without the planned vacation, at this point we would only be able to do one IVF this year (I always need a month off after treatment due to ovarian cysts). Mentally, this helps us to feel better about where we are, as we were both frustrated with the fact that we've been trying to get started since May, always planning around this vacation, and the timing has hit this vacation right on the head.

4 lbs - Seriously?

On Thursday I was happily still just below my pre-pg weight. As of Friday post surgery, I had gained 4lbs and my clothes felt tight. I'm hoping some of it is the IV fluids still in my body, and not just the fact that I started high doses of estrogen again.

I'm expecting the usual weight gain from steriods and injections, but that's not until I'm actually starting my IVF cycle. This pre-cycle weight gain is annoying. Ah, welcome back to the world of fertility treatments...this blows.

I'm also still feeling extremely weak and get tired very easily. Sounds like time to lie on the couch and watch a movie.

Not the news I wanted to hear...more surgery

We aren't moving forward very quickly. I just had a consult with the RE today to review my hysteroscopy and MRI results. Apparently if you think of my uterine cavity as a triangle, 1/3 of it is blocked off. He assumes it's with scar tissue, which is bad. Scar tissue doesn't have any blood supply and it's blocking an entire wall of my uterus. This poses a number of problems.

1) I have bad eggs, I'm making the numbers up but it means only about 1 in 50 of my eggs is any good.
2) I don't stim well (I don't respond to the drugs). Typically, people doing IVF will have anywhere between 5 - 15 eggs retrieved which can then be fertilized into embryos. On my 3 previous IVFs, I had 1 egg, 3 eggs and 4 eggs that fertilized, although most were crappy eggs.
3) If there is no blood supply, there is nowhere for the embryo to implant. With my limited chances from #1 and #2 above, I don't want to decrease it by another 50% if the embryo decides to implant on the scar tissue side instead of the clean side.

All in all, this does not bode well. What to do? Apparently I need to have another HSG test (massive x-ray/ultrasound where they shoot dye up your hoo-ha) to see if there is any opening in my fallopian tube and to determine how massive the scar tissue is. Essentially, the RE is trying to figure out where/how he'll be able to cut the scar tissue out. Once that is decided...

I need to have another hysteroscopy, the same surgery I had three weeks ago. But this time, they'll be cutting the scar tissue out. My RE assured me that since scar tissue doesn't have any blood supply, I shouldn't have any issues with bleeding beyond a normal hysteroscopy. However, in order to prevent additional scar tissue from forming while my body recovers from surgery, they will insert a balloon into my uterus to keep the sides from touching each other. I'll keep it in for 3 days, then have it taken out at a normal office visit. It doesn't sound like any of this will be very pleasant.

Right after the surgery, I'll be put on massive doses of estrogen and progesterone for the next week or so. With the massive hormones and balloon shoved up me, don't be surprised if I complain of bloating. I don't quite recall the reason for all the estrogen and progesterone, but after that I should get another AF and be ready to start the IVF cycle.

On another venting side note about Rx issues, I had noted that my Bravelle finally shipped - yay! But that was a week ago and it has not arrived. It's coming via USPS Express International and requires a signature. I even paid the extra $89 for Speed Shipping which normally has it arrive in 3-4 days. I called about it last Friday, they said it was in the US. Tracking finally saw it in NY on Saturday. Sunday night it left Houston and was supposed to arrive today. I worked from home today in order to sign for it, but alas, it is still not here. I'm going to have to work from home again tomorrow to get the package, because going to the post office and waiting 30-45 minutes in line is probably worse, since they are only open during my work hours, or the time I have with my DS.

A regular theme throughout TTC#1 was...can I just catch a break? I'm starting to feel that way all over again. Why, oh why, doesn't *anything* just work smoothly?

My Rx Company Makes Me Cry

Yes, that's correct. I very strongly despise my Prescription Drug company, which we'll call OffMark. They constantly say they can't find the Rx that has been called in, or that they won't allow a drug, yet they offer no alternative. If they would just say, you can't have this one, but you could have that one which is the exact same thing as long as your doctor approves, my life would be easier.

Just the thought of calling OffMark and working with them on Rx makes me so angry I want to cry (and I often do). The timing of these medications is so critical that getting the runaround from OffMark completely raises my blood pressure and makes me very upset.

After my RE meeting, all I want is a simple Rx prenatal with mega folic acid. I took it in the past and OffMark provided it with no problem. I wonder how many phone calls it will take this time to get my vitamin - ugh.

Incompetent Medical Staff

I remember back to a time when I was naive and thought that doctors and nurses knew everything. I trusted what they said and unless it was something huge, never thought about getting a second opinion or researching something over and over again online. Sadly, I know better now and I've learned that the hard way.

As I've been thinking about when we're going to try again, I'm running through all the items that I have control of about my body, which are pretty few. Two years into my infertility journey I learned that I was hypothyroid and needed to be on thyroid medication. Having an underactive thyroid negatively impacts fertility, you may think, why wasn't this checked up front? The OB checked it but it fell "in range". The RE didn't check because he assumed the OB did. I went to an endocrinologist on my own to have a full panel run and found out that while I was "in range", for fertility it's best to have your TSH <2. Mine wasn't. I got all that fixed and we had our DS.

My Rx dosage changed during pregnancy as it normally does and I wan't to make sure everything was back on track. Enter my company's health clinic. I gave blood, they called with the results and said I was slightly elevated and they wanted me to take an extra pill on Saturdays. Since I don't implicitly trust doctors anymore and keep my own records of everything, I ask, what is slightly elevated? 4.79! Are you kidding me? I told them I needed it to be under 2 and they needed to increase my dose. But apparently they aren't authorized to do that. Whatever. My PCP increases my dose and I go back to my company's health clinic (because it's free) to have my blood tested 4 weeks later. They attempt to get blood out of both arms and can't get any. They tell me to come back another day after I've had a lot of water. Um, I just drank 34 oz of water, had a protein shake and oatmeal, I can't be any more prepared to give a blood sample.

I do have tiny veins and always require a butterfly needle. Some people can't get blood out of one arm, but I've never had it where they can't get it out of both. I am tired of incompetence and of being a pin cushion. So today I'm headed to an actual medical lab where I'll have to pay to have a blood sample taken in order to work with my PCP to get my dose adjusted to have a TSH <2. I'm so glad I thought about starting this process now before I waste any money doing an IVF just to find out my TSH is out of whack.

On that same note, I've been headed to the chiropractor a lot lately to make sure my lower back is inline. When I did acupuncture on and off for a year during my last 2 IUIs and my first 2 IVFs, he thought that I had "sticky blood" and needed more flow to my reproductive organs. Testing revealed that I do have a MTHFR genetic mutation causing blood clots and I took injectible blood thinners my entire pg. Again, this wasn't found until about 2 years into TTC. It was only found because I insisted on having what my RE called a miscarriage panel run on me. They didn't want to do it because I hadn't ever had a miscarriage. So let's think about that. Never having a miscarriage means I've never been pg. If I've never been pg, then nothing has ever implanted. Think I might have an implantation issue? Alas the MTHFR which means I don't absorb folic acid and don't get enough blood to my uterus to allow an embryo to implant and grow. During my pg I went to the chiropractor every 3 weeks to make sure my back was properly adjusted to allow as much blood as possible to flow where it needed to go.

I am tired of incompetent medical staff that don't go above and beyond to find the issue. But this time around I am much wiser, much more educated, and I really do not take no for an answer. When the health clinic said they couldn't increase my dose, my brain immediately started scanning my list of doctors to see which one I could talk into writing an Rx for me. My life, my body, my money, I need to get what I want.

Where to begin?

Hmm, how can you sum up 2.5 years of hell? While I did have success with my DS, that doesn't change the emotional, physical and financial toll that infertility has taken...and will take again.

I hadn't quite figured out how to do this first post, but I think it will just be a vent of the things I hate about IF. For the fertiles who might be reading this, IF stands for infertilty. I've added a little dictionary of terms on the side in case anyone gets lost in the lingo.

Things I hate about IF:
* Getting my blood drawn every other day by an incompentent med. tech.
* Not being able to plan vacations in advance because you never know if you'll have a doc appt that day, be on bedrest, or in surgery
* Progesterone injections that cause big ol' knots in the booty - oh, and that my DH looks at my butt like a meat map from a steak restaurant finding the best place for an injection
* Swollen ovaries that make you bend over and walk funny
* Lying to friends about why you can't drink, or worse telling them why and then having them ask if it worked this time
* People who think they know what they are talking about and say that since I had one LO, my IF must be cured. Ignorant.
* Baby showers
* Insurance companies - don't even get me started, just thinking about Caremark can honestly make me cry. How complicated is it to fill my order correctly? As if I don't have enough to stress about - oh wait, I'm supposed to reduce my stress to get pregnant, yeah right
* Stim fat. That's where all the hormones being injected cause your body to get fat, mainly around the belly. Because there's nothing worse than shelling out thousands of dollars for just a mere chance at getting pregnant, getting a negative test, and then not being able to button your jeans. To quote another friends blog: "Insult, mean injury"
* The cost of it all. A friend complained about a $200 hospital copay for her kid. Really? Each injection into my tummy is $300 and I do that 4 times a day. Don't talk to me about money.
* Cysts are my enemy. For some reason my body hates all the hormones and I get a huge ol' cyst causing me to sit out every other cycle.
* Working while dealing with IF. It's this secret you keep and it's hard to explain why you show up late every other day, take 3 days off but can't predict when those 3 days will be, or start crying at your desk.
* Phone calls from the REs office. Could I be any more anxious every time the cell phone rings knowing it's my life and happiness they hold in my hands?

There are so many more things I hate about IF, but I would never leave my computer if I tried to list them all out.