The Cost of IVF and potential funding
When I found out I was going to go the IVF route, a friend sent me a link to to Conceive Online. But I was too overwhelmed to look into it at the time. It was enough for me to focus on doctor appointments and the twice daily injections. When you are in the midst of IVF, it’s hard to raise your head up and look around you. Hey, being 10 weeks pregnant, it’s hard to raise your head up, etc.
I came across the site today and found some information I had been looking for about IVF funding. They state that the average cost per cycle runs about $12,500 and this was the case for us in New York City. But everything costs about 30% more than it should in Manhattan. It makes me wonder if other states might be less expensive. Somehow, I think not. The site also notes that 14 states require at least partial funding for IVF treatment (Arkansas, California, Connecticut, Hawaii, Illinois, Maryland, Massachusetts, Montana, New Jersey, New York, Ohio, Rhode Island, Texas and West Virginia). I found this information hopeful, but also disheartening. What about the other 36 states? Columbia-Presbyterian (where we went for cycles 1 and 2) participated in the statewide program and encouraged us to apply. We were lucky enough to have full coverage for that facility (they were in our insurance network). but ended up going out of network to the doctor who eventually created the cocktail that got us knocked up.
Here’s a link to Conceive’s article entitled “How Much Does It Cost.” There you will also find a link to the International Council on Infertility Information Dissemination where you can find out more information on funding by state.
9 1/2 weeks
A couple of weeks ago, I heard a women read an essay on being 9 1/2 weeks pregnant. It was beautiful and funny (with wry references to the movie), and poignant in noting such things as the fetus being the size of a grape. I was very envious, not only of her lovely writing but for her sentimentality with being pregnant, with valuing this new life and the life around her.
I, on the other hand, am a bit of a crank at 9 1/2 weeks. I’m not feeling very sentimental, and R. gets visibly upset when I make a dour comment about being inhabited or wonder about whether or not things are still ticking away down there. Didn’t that writer have any anxiety? I didn’t detect it in her words. Only love and hope and joy, some gentle caressing of her belly, a rueful wish for a homeless person. I don’t caress my belly. If I recall, that writer looked rather slim. I stare at my distended stomach in horror and wonder if it is this large now what will it be like in two months? Six? Eight? Friends, my mother, my sister try not to laugh at me. What did you think being pregnant was going to be like? they say. My sister seemed quite bothered by the fact I wasn’t “excited.” I was cheered when she told me her two boys (10 and 13) were guessing what name we’d choose. Why can’t I have that optimism? Believe me, I’m not complaining. I just had no idea what I was in for. As Dr. M. told me yesterday as I was splayed on the examining table: “You are possessed!” She said it with glee, with urging that I accept my condition and get on with it.
“You are possessed!” These words hit home when she turned the ultrasound towards me and showed me this:
My, how it had grown. Up to 2 cm. Dr. M. was thrilled. “Look at that growth! Look at that heartbeat!” She chided me when I asked where the head was. “You know where the head is,” she said, pointing at the larger end of the bulbous kidney bean. This was a beautiful site, and put my fears to rest that the screen would appear blank that morning. “That’s what is possessing you,” she said. At this moment, I loved Dr. M. because she was expressing more happiness that I could. Of course I’m happy! But I’m overwhelmed by what is happening. Maybe if this process hadn’t been so closely monitored and documented, it would feel more natural, more spontaneous. It’s easier for me to think of this life growing inside me as a visitor, one who is taking over for a while (and who will continue to for the next lifetime?). And since I’m not one who likes to be put out of my way, I’m having some issues dealing with it. I truly believe if I wasn’t so sick half the time I’d be embracing this with more grace, like the essayist who so eloquently put into words her joy and wonder, the words that I seem to be lacking.
So I will continue to mention to R. that I hope the paddles that have formed will indeed turn into limbs, and the head will continue to grow at a faster rate that the rest of the body (but not too big). In fact, the fuzzy little guy is kind of cute, in an ET sort of way, balled up in it’s signature fetal position, all cozy in that deep dark space that is me.
IVF Costs and Financial Assistance
This past Sunday, I had lunch with a friend who I haven’t seen in a while. We were with another friend who was “in the know”, so it was hard to not break my rule of telling any more people than necessary. It was nice to talk about the pregnancy in a positive way. I tried not to make too many disclaimers regarding the eight week mark. I mentioned the IVF, not really wanting to go into that part of it, and she said her sister-in-law had just completed her first cycle with negative results. I felt a little ill thinking of someone going through that same disappointment. It’s hard, isn’t it? she asked. God, I said. It’s so hard. I wouldn’t wish it on anyone.
Now, we know I’m more of a wimp than most people, and that many women go through IVF with varying degrees of bloating and discomfort and cramping. But it’s the emotional part that can be so devastating. Having to deal with filling syringes with god-knows-what hormones, sucking it up and saying you can get through it, that it’s not for so long, that it will all be worth it. And it isn’t so bad when there is a payoff. It’s easy to say it will be worth it. But the hard part is dealing with those failed attempts.
My friend said, “I don’t know how they are doing it. It’s very expensive.” Yes, indeed. R. and I were lucky. Our insurance covers four cycles of IVF in a lifetime. How’s that for pressure? This cycle we went to a doctor who didn’t take insurance. We paid for everything upfront and are now waiting (anxiously) to see how we will be reimbursed. R. and I push the insurance statements back and forth between us with a “you deal with it” shrug — this particular insurance company is quite skillful at confusion. But it is the rare insurance plan that covers IVF. I suppose there is the question of medical necessity. And there are age limits involved. Our plan doesn’t cover it if the patient is over 44. And I think that is generous, because I kick myself for waiting so long to try to get pregnant. At times I wondered who I thought I was to even try, to defy nature and my body.
Cycles run anywhere from 10K to 15K, depending on the length of treatment and extra procedures. I’m sure in some practices it is even more. The medications themselves cost hundreds WITH insurance. Without, they cost upwards of $3000. We are very lucky to have good insurance. But not everyone does, which makes all of this even more frustrating.
My friend said, “People don’t talk about this.” I recognized the awe of the uninitiated. It reminded me of why I even started this blog. I had one too many conversations where someone said, “People don’t talk about this.” I went online and found that people were certainly talking about it, but in their own circles. I am lucky enough to have friends who have dealt with this and who offered excellent recommendations (not to mention moral support).
But there are financial options. One friend told me about Columbia Presbyterian’s (Center for Reproductive Care) financial assistance program. We didn’t quality because we had coverage, but Columbia participates in the New York State Department of Health Infertility Demonstration Program, which provides assistance to insured patients without fertility coverage. I’m sure other states have these programs. They must. I told my friend about it, so she could tell her sister-in-law, who sounds like she could qualify. Columbia also offered a loan assitance program. A nice thought, but it’s hard to think about going into debt to just try to get pregnant. When I looked at those forms, I shot ahead seventeen years to when I might be filling out college loan applications. At the time I thought, wouldn’t that be nice?
Protein 8, what are you?
This week started out promising. On Sunday, I stopped all hormonal treatments (progesterone and estrogen). On Monday, I had bloodwork done to see if my levels were good and if I could stay off the junk. When I woke up on Monday morning, I felt more clear-headed than I had in a while. The opposite of waking up with a hangover, I suppose. The nurse called to tell me my levels were good, so no more shots and patches! It felt great. But she also told me she forgot to give me a requisition for more bloodwork. What? Dr. M. wants me to have additional bloodwork. Can I come back to pick up the form? No, I said. I was pissed that they forgot to give it to me, and with my new queasy way of life making the trip cross and up town is like climbing Everest. The nurse said she would mail me the form, so I didn’t think much of it.
Last night Dr. M. called to give me some OB recommendations.Bboth generalists and high-risk were on the list because she didn’t know if I needed to go high-risk. My latest labs had not come back yet, and they would determine whether I was high risk or not. What? I told her I hadn’t had the tests yet. I was led to believe they weren’t critical. She said I tested inconclusive on the Protein 8 test (I have no idea what this is, but apparently it indicates a clotting issue). I need to retest to see what range I’m in, as a poor result (or deficiency?) will put me at high-risk. High risk for what? I ask. Miscarriage, pre-term, she tells me, and I detect a bit of exasperation in her voice. What the heck do I think “high risk” means?? If the results are low, I may need to be on heparin, a blood thinner, for the duration of my pregnancy. More shots. More worry.
Now, what I love about Dr. M. is that she is so thorough. She leaves no stone unturned. But this just blows. She told me to have the test done immediately because at eight weeks she’d like to treat this condition if I indeed have it. Shit. Just as I was feeling happy and confident about the pregnancy, I suddenly feel fragile again.
Last night, for the first time in weeks, I didn’t drop off to sleep two minutes after picking up a book. I worried, with my new worry of the week, and prayed the test would be conclusive this time, to my benefit.
I’ll go to the lab this morning, but it might be a few days before I get the results. This may be one extra long weekend.
Week 6: ultrasound
I saw the kidney bean shaped yolk sac. I even saw the heart beat – a black and white rapid flash in my uterus. Dr. M. kept asking me to believe her, as if I don’t hang on to every word she says. I was fairly confident we’d find our yolk sac because I felt nauseas and generally crappy all day. I wasn’t prepared for the other revelations that included the discovery of my arcuate uterus. Arcuate means “heart shaped.” The uterus is generally triangular, an upside down triangle. The top of my upside down triangle dips, creating the heart, and this puts me at higher risk for pre-term. Dr. M. tried to point out the shape on the ultrasound (again, “believe me”) but my civilian eye could not decipher the web of black and white tissue or faint edges of the uterus. I believed. But what does that mean? I can’t comprehend half the things Dr. M. tells me. Granted, it doesn’t help that I’m splayed out on my back, legs in the air, while she stands at the counter scribbling on my file. It’s not like I can take notes. So I ask again and again, what does this mean, and she says, we’ll have to keep an eye on it. She gives me a sympathetic look, which I hate, and says I will, after all, need to see a high risk OB. I thought I would because of my age, but before the exam she didn’t think so. Because she didn’t do my HSG (about a year ago) she doesn’t know if it was always this shape, or if it is a result from the treatments. Does this means it might correct itself? I won’t be graduating from the fertility office next week. She wants me to come back two more weeks to keep an eye on me.
She also points out several large ovarian cysts that have formed since the transfer. This is normal, she says, but they are large and numerous enough for her to tell me to stop exercising. But I’ve only been walking and doing gentle yoga. No long walks, she says. You need to be more specific, I say. No 20 block walks. That’s a mile. I can’t walk a mile? I don’t point out that I probably walk at least a mile a day between home and subway and work and even getting to this appointment. Walking has saved me these past few weeks. The no long walks instruction depresses me more than anything. I feel shallow, for thinking of myself, my sanity, my need to stretch my legs, my need to get the blood flowing in my body. How about yoga, I ask? No inversions, she says.
More research to come on the arcuate uterus. Anyone out there have one?
Fears
Only the truly diligent know they are even pregnant at this stage. It is too early to think about it, talk about, plan for anything. I may not even be pregnant right now. That is the horror of it. You are only as good as your last pregnancy test. I’ve learned to be comforted by exhaustion, by cramps, by painful bowel movements. These are all signs that something is going on down there. I even like the fleeting moments of nausea I experienced last week, that vague carsick wooziness. A loosening in the jaws, the need to eat a cracker to calm my stomach.
But some time last week, I think Thursday, I stopped feeling so awful. The cramps stopped. The fatigue remained (thank god), but no more debilitating lower abdominal pain. And you know what? This makes me nervous. My acupuncturist told me she doesn’t have needles large enough for me. Am I really that bad? I’m sure most women are this anxious. The further along you are, the closer you are to something. But as more time passes, there is more to lose.
My ultrasound is on Tuesday. They will look for the yolk sac. At eight weeks, it is considered a fetus. Right now, it’s still in the prep stage. I think about my age and how lucky we are to be where we are. I think about my age and the things that can go wrong.
Yesterday, R. and I spent the day shopping in New Jersey. The malls and large department stores, especially Target, present a frightening cross section of all that can go wrong in the world. When I crossed paths with a child or adolescent with an obvious disability, my heart sank.
I refuse to look at statistics. I know they will be revealed later. For now I distract myself, which is probably why I haven’t posted as often this week. I’m trying to spare others of my craziness. I’m trying to hide all these fears.
hCG levels: week 5
Today I had my third blood test: hCG levels are at 1631. The nurse says this is very good. Next week (week 6) I have my first ultrasound to see how many there are. How many? I forgot about that part. And the week after that, we schedule a second ultrasound in order to see or hear the heartbeat. I think it will be too early to “hear” anything, and I can’t remember what the nurse told me because usually when I get the afternoon call my heart is in my throat and I am just so relieved to have good news that all the other information seems inconsequential. I carry a notepad and pen with me when I take the call, but my scribblings are illegible: random numbers etched in the corners of the page, dates and times with arrows pointing up and down. What the hell does this mean? I have to go on memory, and end up calling them back to confirm my next appointment.
So, yes, good news. But the up and down hopes and fears continue. Silly me. I thought I’d have some peace of mind when we reached this point. But there are still so many hurdles to clear. The cycle goes like this: mounting anxiety as a test day approaches; relief upon hearing good results; about an hour of happiness and optimism; then slowly the anxiety starts to build up as the thought of the next test looms ahead.
This whole week 5 status feels very nebulous. It’s an in-between state. The nurses are congratulatory and happy, but it’s not like I’m really pregnant yet. No formal instructions are given. “Don’t eat raw fish” is all they’ve told me. When I asked for more information on what I should or shouldn’t be eating, drinking, etc., the nurse looked at me slightly cock-eyed and said, “We don’t get into that here.” I took it partly to mean, honey, we knocked you up and our job is to lock it in and send you packing. “Your OB will give you a list,” she said. I suppose if I had one lined up, I could ask her or him, but I don’t. I wasn’t thinking that far ahead.
hCG levels are up!
This morning I went in for my second blood test. I would not have been too nervous about it if I hadn’t detected some sort of spotting last night. It wasn’t easily identifiable, and I wasn’t into examining it. Don’t worry about it, I told myself. My sister said it was normal but to tell the doctor anyway. The constant fatigue and crampy pressure in my abdomen does not help me feel equipped to deal with minor worries. But, I’ve learned to like the crampy pressure. I now trust that it is a good sign.
I tell the nurse about the spotting. Was it brown? she asks. No. Was it red? No. It was pink. Furrowed brow. Bright red concerns us, she said. But “pink” is just another fuzzy line in this mysterious business of procreation.
I tell myself not to be nervous, but I am alarmed when the office left a message at 3:30. Usually I call them. But it is fine. The hCG levels had increased to 148 (it was 56 on Monday). This is good. If pregnant, hCG levels double every 72 hours. With the increase in my levels, the doctor isn’t concerned about the spotting, and there is no more pink nor brown nor red. I know this is just the beginning of many foreign bodily ejections and many worrisome, unexplained physical quirks.
Pregnancy Test Results
I wake up this morning at 6am with a full bladder. I lie in bed a full hour, in no small amount of pain, putting off the inevitable, because the First Response is still poised on the magazine caddy. Finally I get up. I piss, I dip, I look. One dark line appears. My hands shake. One dark line where I needed to see two. I brush my teeth and pick up the wand to see the bad news again. But wait. A faint pink line has formed. Shit! A faint pink line! I read the instructions again. Yes, that’s what we want to see.
R. and I stand in the bathroom like a couple of idiots, not trusting anything. “Do you think it is right?” “I don’t know. It says two lines.” I bet most couples would be jumping up and down. But we doubt everything now. We drive to the doctor’s office for my blood test, making small talk, not willing to jinx anything. We will not acknowledge that faint pink line until someone official sanctions it. At 3pm, I’m to call for the results. All day I’m hopped up on nerves, hands shaking, eyes wide, feeling like I drank a quart of coffee. Holy shit. Holy shit. The nurse confirms the test is positive. My hCG and progesterone are at good levels. She sounds cheerful and optimistic. No doom and gloom! I guess I’m pregnant. I guess I learned how to read an early pregnancy test. (Can you tell I don’t have much experience with these?)
We are happy. Relieved. But strangely, I feel a bit shocked. So much hoping and praying and complaining, and now this — the results we wanted. I thought I’d be jumping up and down shouting screaming rejoicing. This is huge. And I am truly happy. But in a quiet, peaceful way. I think I’m on to the next phase, relieved, for sure, that the first step is over. That first horrible step. Another test on Wednesday, then next Monday, then two ultrasounds. After that, we are packed off and sent to an OB/GYN.
After I talked to the nurse, and called my husband, I sat in the small conference room at work (the only place I have privacy) and found I didn’t want to call anyone else just yet. It’s too early. It’s only been two weeks. You don’t announce these things right away. Later, a friend asked if I was going to tell people. I said, well, I have a blog. But people who read it understand. This is a journey. This isn’t your typical road to family planning.
Thanks, everyone. Thanks for the good thoughts and energy and prayers and cheers and for reading and listening. But stay tuned. There’s more. There’s much, much more. I think this is only beginning.
Numbers
I thought I’d write a little about numbers.
Dr. C., my first fert doc, gave us a 10% chance with IVF. Ten percent! That’s a tough number to swallow with such an invasive (and expensive) treatment. She tried to put a positive spin on it by telling me that is the percentage a couple without fertility problems has each month. Yeah, but… Dr. M. didn’t mention numbers and I didn’t ask until the day of the transfer. I figured I was going to do it regardless of the numbers. And not thinking about them makes it slightly easier. But they are there. They are always there.
SART, the Society for Assisted Reproductive Technology, an organization that helps set and maintain standards for ART clinics, posts statistics on their website. It lists national IVF success rates, as well as those of individual clinics – there is a handy online chart that notes type of diagnosis, age and treatment.
I try not to think too much about numbers because it makes me depressed. The charts confirm our 10% from Columbia, and NYU shows the promised 19%. But friends say not to pay attention to those numbers: they are only numbers. Friends say the doctors give those numbers because they don’t want you to be disappointed, that they want to be the heroes when it does work out.
I’m hoping they get to be heroes.
After two unsuccessful attempts at Columbia-Presbyterian, Dr. C. suggested an egg donor which would increase our chances to 75%. Quite impressive. Whenever she mentioned “donor” her face lit up. It made me want to lunge across the desk and shake her. But I did listen to her and started researching the process and we decided not yet. Instead we switched to Dr. M., who is in private practice and works with New York University. Dr. M. hasn’t suggested donor eggs yet, which leaves me optimistic. But she also may not know my IVF threshhold. I suppose if I kept trying it would eventually happen, but I’m not one of those women who can do this eight or nine times. We won’t be dealing with this for years because we don’t have time. Unless, of course, we go the donor route. I’m told time is not an issue with a donor egg. I could be 55 and still do it. Is that supposed to cheer me up?
