Tuesday, January 31, 2006

The RANT: Pre-HSG

(Begin RANT)

Once again, I'm reminded by how much of an advocate for my own health I need to be.

You'd think I'd be used to this, being diabetic all these years, and knowing how to handle the condition.

And a few years back, when I was dealing with a potential cancer diagnosis, it was the same thing: tell EVERY doctor I was seeing EVERY different health issue I had (the 'betes, the thyroid, the eyes, the whatever-the-heck-it-is tumor thing growing in my stomach).

I can add potential fertility issues to the list.

Yesterday I had scheduled several tests at my hospital to help me figure out why I haven't been getting pregnant. Several docs said "you should schedule some follow-up CT scans to make sure your abdominal tumor hasn't returned, 1.5 years after it was removed." I'd been scheduling these CT scans every few months immediately after the removal, but had tapered them off last fall as the mister and I started trying to conceive. Once you're pregnant, you have to avoid all CT scans so you don't irradiate the kid growing within.

Fine with me.

But since I'm not getting pregnant, the docs figured now would be a good window for a tumor check. SO I go yesterday for the CT scans, which entail waking up super early so I can have the first appointment of the day, drinking two jugs of this nasty milkshake-like concoction that coats your insides so the docs can better read the CT scan, lying flat while they shoot the CT scan rays at you, and give you an IV of a dye so they can also see what's happening inside more clearly.

Because I don't like to spend my days out of work, hanging out at the hospital, I thought it would be a good idea to also schedule the HSG test on the same day. This is the test the IVF doc ordered to see if there's a blockage in my fallopian tubes. So I scheduled THAT test at the same hospital on the same day, just six hours later.

As I was having the IV put in for the abdominal CT scans in the morning, I asked the nurse about my afternoon test. She said that the dye from the CT scans might still be in my body that afternoon, and it might hinder the HSG tests, making it hard to see if there's a blockage in the tubes.

Great.

Why didn't anyone point this out to me when I was making my appointments? Why didn't anyone at the infertilty doc's office notice this when I said I planned to make both appointments on the same day so as to save time?

Since I'd already drank the milkshake goop, and the hospital didn't do the fallopian test in the mornings, just afternoons, there was no way to get the gyno test done first. And to top it off, I pointed out that since my insurance wasn't covering anything infertility-related, I did NOT want to waste my time and money having an HSG test that would turn out to be a bust because the tubes couldn't be seen.

The CT scan tests moved along and while I'm not expecting to hear that my insides have grown any new tumors, I've got to call the docs associated with those body parts (my cancer surgeon and another doc) to find out what those results are. Hopefully, everything looks fine inside, but if my tumor has returned or some other questionable nodules inside look odd, this whole pregnancy thing is off anyway. However, my ab tumor (again, a full story is better told another day, or perhaps on another blog), was some oddball growth that had apparently been inside me for years and didn't appear to be badly malignant, so I chalked it up to just another freaky health problem I've had. Because of its location and frankly, weirdness, I went to a major cancer center to have it removed, but since then, except for the periodical CT scans, I don't worry about it all that much. The diabetes and now the infertility issues far more affect my day-to-day experience.

I went to work after the CT scans and drank 1.5 liters of water in a few hours. It's a lot of liquid, and between that and the crappy milkshake, I didn't think to eat all day. My blood sugars were weird: woke up at 110, was 138 two hours later and corrected to 100, was 184 when I got to work (stress-related, I'm sure), corrected again to 100, but was 243 when I tested before leaving work around 6pm. Again, I hadn't eaten all day, but was annoyed and on the phone with docs all afternoon, so there you go, folks: stress affects blood sugar levels.

At 1:30, I downed 800 milligrams of Advil, as directed, for the pending (potentially painful) vaginal test. At 2:30, I was back at the hospital for the HSG. At 2:40, the radiologists told me they would do a quick abdominal scan to see if the dye from this morning's procedure was out of my system. Remember, I'd drank a ton of water and made several bathroom visits to flush this stuff out, as I was directed to do. For the record, I'd also asked the infertility doc more than once before the test if it was OK to do this test on the same day and was told, more than once, that it'd be fine.

But no.

The radiologists showed me there was still dye in my system, and that it would affect their readings of the HSG test. I pointed out that my IVF doc said it wouldn't be a problem, and they pointed out that since they were the ones reading the scans, their opinion counted more. No test.

Adding to this is that I was told this test could be done on days 7-10 of your menstrual cycle, and this was day 9 for me. I rescheduled the test for today, day 10, but was told I might still have the dye inside me.

I then went to the hospital lobby and sat down in a private area on the floor and called several people on the cell.

One was Mr. Lyrehca, to tell him the test had been a bust.

Two was the IVF center, to ask "What the fuck?" The doc's assistant, who has only known me a week but is probably already sick my calls, listened to me bitch about the scheduling. I told her that I'd only been going there a week, but frankly, I already felt like things weren't working smoothly and I didn't want to fuck around if I'm trying to have a child and I'm not told beforehand the issues around scheduling tests and whatnot. I feel like now I have to always ask WHEN a specific test should be scheduled, both WITHIN my cycle (This appears to be a key thing. I would have scheduled the HSG test on day 7, last Friday, if I'd known I could) and IN TANDEM with my other health concerns (the diabetes, the tumor, the thyroid, ad nauseum).

She got the doc on the phone for me, and he did say he didn't realize that there would be a problem with scheduling both tests on the same day. I felt a bit better about that--at least someone was taking the fall for my runaround.

We then talked about the results of my day 3 bloodwork. He confirmed that yes, because my thyroid levels were inexplicably out of wack, we should not try to conceive this month until my adjusted synthroid dose kicks in... right around the time of my next cycle. My estradiol levels are more of a concern. They fluctuate month-to-month, but mine are higher than they should be, which means I'm in perimenopause at 35. This is the time before your body goes into menopause, and there's no way to know how long it'll last. So while THAT didn't thrill me, the doc said it was the most common reason he sees infertility patients, and that getting pregnant would be more difficult. When I asked about having a second child, he said that too would be more difficult, but that he's had patients get pregnant when they had higher estradiol and worse FSH levels than me.

He said he'd be fine with me having this HSG test on day 11 of my cycle, and that the dye would surely be out of my system by then, and the test would still be effective. OK. News to me, since I'd been told by the radiologist that it was days 7-10 when the test could happen, but whatever. I'm scheduled for another HSG test for Wednesday.

I asked him if the husband and I should start looking into adoption agencies, and he said since he'd just met me, he would have to get to know me a bit better and know what the mister's and my goals were in this process. I thought that was a good point.

After finishing with him, I called the clinic back and asked to speak to the financial person in the office. Apparently, they have a person who wades through insurance issues to find out exactly how one can pay for all this. The person I'd spoken to a week ago was only a part-timer, while I wanted to speak to the head person.

Based on Kassie's advice on yesterday's post, I emailed my insurance rep from work and asked specifically about getting anything infertility covered, since I live in a state that mandates it (although my insurance is based in another state). The rep wrote back and said that anything diagnostic, tests and the like, could be covered, but that the actual infertility treatment was not. This is actually different than what my insurance paperwork says, so I emailed her back a few times just to make sure, and then talked to the head financial person at the clinic and pointed out what I'd been told. The head person said having this in email was great, and that I should forward this information to her so that when my bills are submitted to my insurance, they will code whatever they can as diagnostic and we'll see how that plays out.

She also told me about some finance plan for infertility treatments, and when I asked if I could pay for the infertility bills monthly, after the fact, she told me that all infertility treatments need to be paid in full, in advance. Great. It's not like the Mister and I *wanted* to deplete our savings for this.

She then asked me if I did consulting work, which I do. She told me I could qualify for a secondary insurance plan for my freelance work that would cover infertility treatments on the plan. In essence, I would pay the monthly rates and a certain deductible, and even though it's still thousands out of pocket, as the finance woman told me, "it's a drop in the bucket compared to paying for even one IVF cycle out of pocket." And that's just counting one IVF cycle. Suppose I need three or four? Now the thousands are in the double digits without this secondary insurance.

I feel like this secondary insurance plan might be the answer for me and called the broker to have information sent to me.

I then called the hubby and told him, briefly, about my day, then went back to work for a few hours and barely did any work, instead emailing the details of both my failed HSG test and all the conversations I'd had with the doc and the financial woman.

On my drive home, I thought about how this will all play out.

And when I got home, the hubby was supportive, but told me that he thinks I'm getting overly agitated about things that just happen because that's life. He also said that I think too far ahead of the game, and that we don't need to sign up with adoption agencies now if we haven't even tried any kind of assisted reproductive technology yet. He also said he does a lot of things for our house that don't always go the way he wants them to, and he's waited in line for stamps only to be told the post office is sold out of 2 cent stamps, and he doesn't get as pissed as I do about it. I pointed out that we're talking about our potential family here, and my health, and our children, and I think those are more important than trying to buy some stamps.

I *know* he's not trying to be thick-headed, but I just don't think he knows how to respond when I get wild-eyed and loud about yet another health issue or problem or setback. For the most part, he's generally a great guy, so rather than scream and yell at him about how his answers to my health problems make him sound like a Neanderthal, I calmly listened when he suggested I go (back) into therapy as we sort through this next health chapter, and calmly, I agreed that might be a good idea. At least a shrink would let me talk all about myself and not come back with some dumb anecdote about stamps, for fuck's sakes.

"Go rant on your blog," he also said.

And here it is, people. Thanks for sticking with me if you've actually read this all the way through.

(/RANT complete.)

6 comments:

Penny said...

I read it all the way through. I'm sorry for all the things you've been through and are yet to go through. You are in my thoughts and prayers.

Kassie said...

Excellent rant. Boys just don't get us. Stamps, that slayed me.

Glad to hear there's hope on the financial horizon. Here's hoping that the other horizons look bright very soon!

Meredith said...

You need chocolate and a LONG bath. Perhaps with bubbles. But that depends on your "girliness."

Kassie's post on insurance was due to an experience I had. I'm in MA and my company is in WA. They had a limit on DME that would have prevented me from getting a pump, and they also had a clause in the policy that said they would comply with the laws of the state in which the subscriber lives. Based on MA law regarding diabetes coverage, I was able to get them to lift the DME cap for diabetes-related items. Check your policy for a statement on out-of-state subscribers.

J said...

Thinking of you read all the way thru keeping my fingers crossed

Jenni Prokopy said...

girl, what a day. sounds like you handled it the best you could - i wouldn't even have gone back to work after what you went through. and i think my hubbie would have reacted similarly - best intentions, but not quite getting it. big hugs. -jenni

Erica said...

I'm so glad that there might be some financial relief.

What a rollercoaster...

Keeping my fingers x'd for you and the mister. You are one strong lady. I would have been a puddle of tears and self pity.

 

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