ChezPerky

I’m writing this on the plane home from Florida. S, J, and I had a lovely visit with my folks. We took J to Disney World for the first time. Ugh, what a mess. It took an hour to get from the car to the entrance of Magic Kingdom. That is assinine. I despise huge crowds and this was one enormous crowd. I’d like to say it was all worth it to see Julian having a great time, but to be honest, it was a bit much for him too. We rode on two rides (teacups and racecars). While he loved the rides, he was so anxious and upset about the lines and waiting and the fact that the rides didn’t last nearly as long as the waits. It was very frustrating for him. It’s hard to be three, you know? Anyway, we’d planned on half a day there, figuring we might stretch it to a full day if J wanted to, but after lunch, we asked him what he’d like to do next and he said he wanted to go home. We even offered another ride on the racecars, but he was determined to go home. I think he had the most fun on the monorail from the Magic Kingdom entrance back to the “ticketing and transportation area” than anywhere else. Definitely an expensive half a day, also. I’m not entirely convinced that it’s worth the money for Magic Kingdom, but I’m willing to try going back when J gets a little older. I think we would have been better off going to Seaworld. I think he might have gotten more out of that. Ah well. At least my father paid for the Disney tickets.

Anywhozit, before we left for Orlando, I had my IVF Consult with Dr. Amazing. The appointment was at 9:30 on Friday, which meant S was able to come with me, which is an unusual occurrence. S had never met Dr. Amazing before, so this was as good an opportunity as any other. The appointment started late (after 10am) because Dr. Amazing had an unusually puzzling retrieval that pushed his schedule behind. In fact, he had to go back to complete the retrieval in the middle of our appointment, but I did appreciate that he took the time to squeeze in what he could in the middle. We met with him for about 20 minutes, then the nurse came in to deal with some paperwork, then Dr. Amazing returned, and then back with the nurse to finish the paperwork.

This was our second IVF Consult. After the first IVF consult (with Dr. T), I got pregnant with the IUI cycle I’d been in the middle of when I had that consult. I doubt it will be a trend. I’m in the 2ww for my last IUI cycle and it was such a weird, ridiculous cycle that even Dr. Amazing isn’t terribly optimistic about it. He started our appointment by saying “I share your impatience. It’s time to move on.”

He talked about the decision factors that doctors consider when deciding about what course of treatment to use. He said the four factors that are most important to him are:

1. Quckly: how quickly will you attain a positive result?
   • With my history and Ovulation Induction/IUI, he would expect a 20-25% success rate per cycle.
   • With my history and IVF, he would expect about a 50% success rate per cycle.
2. Simplicity: What is the simplest route?
   Dr. Amazing admitted that there’s some question about whether ovulation induction with injectable gonadotropins is really significantly more simple than an IVF protocol. Certainly, it’s fewer drugs, and lower doses, but sometimes it’s just as complicated to control follicle stimulation to one or two follicles for IUI as it is to hyperstimulate for IVF. I’m still willing to admit that IVF is less simple than IUI, given the invasiveness of IVF.
3. Safely: What is the safest treatment to pursue?
   • Dr. Amazing sort of skipped over this one and addressed it later at some length by talking about the risks associated with IVF (he didn’t really compare and contrast, nor did he really need to).
   • Specifically, he noted that about 1 in 50 patients experiences OHSS (Ovarian Hyper Stimulation Syndrome). He said that with PCOS patients, that risk increases to approximately 1 in 25, which is much higher odds than I would have expected. He said that once or twice per year the clinic has to admit someone to the hospital to drain the fluid that accumulates in the abdominal cavity due to OHSS (in other words, it’s very rare… this clinic initiates approximately 2000 IVF cycles per year). The clinic has never had a patient die from complications of OHSS, though in very rare cases, OHSS can be fatal.
   • More importantly, the biggest risk of IVF is multiple births. I can’t remember the percentages that he gave, but they were still pretty small, given that at my age they wouldn’t recommend transferring more than 1 or 2 embryos at once. He talked a bit about this, in fact. He said he would recommend 1 or 2 embryos, depending on the quality of the embryos (unless we specifically want only one, in which case the clinic will honor that). He said that if I have very high quality embryos they would recommend only transferring one. He said that when they reviewed their internal data of patients who had only one embryo transferred, the pregnancy rate was a bit above 60%. Admittedly, this was a very favorable group for the most part. With low quality embryos, generally they try to transfer more than one, if available. He did warn, however, that with PCOS patients, they don’t tend to see many embryos of that quality. Fair enough.
4. Financial Considerations: While they prefer not to be driven solely by cost for deciding on treatment, it is something that realistically needs to be considered.
   • In my case, since I have insurance, it’s less of a consideration, but Dr. Amazing noted that since my insurance may be running out, this is still a legitimate concern. Also, since insurance coverage generally has a lifetime cap on treatment costs, you have to consider the overall financial impact of multiple less-expensive methods. So far, I’ve used up about $15-20K of my lifetime cap. I happen to have a very high cap on my coverage at $100K, but I know many people with a $20K cap. Certainly if I had no insurance, I’d have to be even more cognizant of the cost. As it is, I’m extremely grateful, and always completely aware of how the money’s being spent, even though it isn’t MY money all the time (though I do pay a hefty copay for the drugs, a small copay for each visit, and 10% of the cost of each cycle, so it’s not completely free, either).

Dr. Amazing also confirmed that my thrombophilia panel came back negative, though one test was borderline. And then he outlined the protocol that I’d be using for IVF. With IUI, he was looking for 1-2 follicles per cycle, but with IVF, he’ll be looking for 10-30 mature follicles per cycle. He said about 15% of their cases are cancelled due to under- or over-stimulation. He does not anticipate that under-stimulation will be a problem for me (but also noted that you can convert an IVF cycle to an IUI cycle if necessary). Compared to IUI cycles, that’s a low cancellation rate. Cancellation for IUI (usually for over-stimulation) is more like 30%. Apparently, I had come a lot closer than I realized to having cancelled cycles. Three were close calls, including this last one. So I am grateful that at least I made it to trigger day.

Since I have PCOS, the main difference in my protocol is that once I start FSH injections, I will remain on 20 IUs of Lupron, while usually they reduce the Lupron dosage to 5IUs at that point. So here’s what I’ll be doing:

1. On March 1st I’ll have my beta hCG. Presumably, it will come back negative*, which means I can probably expect my period by March 4th or so. Three days later, I will start taking birth control pills. I fully expect my migraine level to increase significantly about a week after that.
2. I will start taking Lupron, 20 IUs, during Passover (yes, my Rav approved this) so that I can go in for my Lupron evaluation immediately after Passover.
3. Assuming I am appropriately suppressed (likely, since I’ll have been on BCPs longer than necessary), I will start FSH injections. This time I’ll be taking Gonal-f, only so I can avoid the Follistim Pen. I have a hard time reading the dosage window on the pen, because I see double (long story). But it’s all the same, and doesn’t really matter which one I use.
4. I will, of course, be monitored for progress. Then egg retrieval (if we make it that far) and transfer (if we make it that far)
5. Progesterone in Oil (PIO) for 18 days from retrieval to beta. If beta is negative, stop PIO shots. If beta is positive, I can switch to crinone… I think I might prefer the PIO shots, to be honest!
6. Lather rinse, repeat until positive beta.

So, my friends, let the fun begin! Yippee.

P.S. I’m kind of embarrassed that this post is so long. But fortunately I am lazier than I am embarrrassed and I’m not willing to go back and edit out the useless stuff. Also I’m tired, having only just arrived home from Orlando. Here’s a tip: Do not ever take Air Tran. Ever. They lost my car seat. I’m not kidding.
_____________________
* If the test is positive, well, that will be cool and yet, somehow, annoying. Something in me says “if the test is positive, then I’ll have to wait another 4-6 months before I have to start this crap all over again and they might make me revert back to IUI, and oh-my-god-why-on-earth-doesn’t-it-even-occur-to-me-that-it-could-be-a-NINE-month-break????”

I'm writing this on the plane home from Florida. S, J, and I had a lovely visit with my folks. We took J to Disney World for the first time. Ugh, what a mess. It took an hour to get from the car to the entrance of Magic Kingdom. That is assinine. I despise huge crowds and this was one enormous crowd. I'd like to say it was all worth it to see Julian having a great time, but to be honest, it was a bit much for him too. We rode on two rides (teacups and racecars). While he loved the rides, he was so anxious and upset about the lines and waiting and the fact that the rides didn't last nearly as long as the waits. It was very frustrating for him. It's hard to be three, you know? Anyway, we'd planned on half a day there, figuring we might stretch it to a full day if J wanted to, but after lunch, we asked him what he'd like to do next and he said he wanted to go home. We even offered another ride on the racecars, but he was determined to go home. I think he had the most fun on the monorail from the Magic Kingdom entrance back to the "ticketing and transportation area" than anywhere else. Definitely an expensive half a day, also. I'm not entirely convinced that it's worth the money for Magic Kingdom, but I'm willing to try going back when J gets a little older. I think we would have been better off going to Seaworld. I think he might have gotten more out of that. Ah well. At least my father paid for the Disney tickets.

Anywhozit, before we left for Orlando, I had my IVF Consult with Dr. Amazing. The appointment was at 9:30 on Friday, which meant S was able to come with me, which is an unusual occurrence. S had never met Dr. Amazing before, so this was as good an opportunity as any other. The appointment started late (after 10am) because Dr. Amazing had an unusually puzzling retrieval that pushed his schedule behind. In fact, he had to go back to complete the retrieval in the middle of our appointment, but I did appreciate that he took the time to squeeze in what he could in the middle. We met with him for about 20 minutes, then the nurse came in to deal with some paperwork, then Dr. Amazing returned, and then back with the nurse to finish the paperwork.

This was our second IVF Consult. After the first IVF consult (with Dr. T), I got pregnant with the IUI cycle I'd been in the middle of when I had that consult. I doubt it will be a trend. I'm in the 2ww for my last IUI cycle and it was such a weird, ridiculous cycle that even Dr. Amazing isn't terribly optimistic about it. He started our appointment by saying "I share your impatience. It's time to move on."

He talked about the decision factors that doctors consider when deciding about what course of treatment to use. He said the four factors that are most important to him are:

1. Quckly: how quickly will you attain a positive result?
   • With my history and Ovulation Induction/IUI, he would expect a 20-25% success rate per cycle.
   • With my history and IVF, he would expect about a 50% success rate per cycle.
2. Simplicity: What is the simplest route?
   Dr. Amazing admitted that there's some question about whether ovulation induction with injectable gonadotropins is really significantly more simple than an IVF protocol. Certainly, it's fewer drugs, and lower doses, but sometimes it's just as complicated to control follicle stimulation to one or two follicles for IUI as it is to hyperstimulate for IVF. I'm still willing to admit that IVF is less simple than IUI, given the invasiveness of IVF.
3. Safely: What is the safest treatment to pursue?
   • Dr. Amazing sort of skipped over this one and addressed it later at some length by talking about the risks associated with IVF (he didn't really compare and contrast, nor did he really need to).
   • Specifically, he noted that about 1 in 50 patients experiences OHSS (Ovarian Hyper Stimulation Syndrome). He said that with PCOS patients, that risk increases to approximately 1 in 25, which is much higher odds than I would have expected. He said that once or twice per year the clinic has to admit someone to the hospital to drain the fluid that accumulates in the abdominal cavity due to OHSS (in other words, it's very rare… this clinic initiates approximately 2000 IVF cycles per year). The clinic has never had a patient die from complications of OHSS, though in very rare cases, OHSS can be fatal.
   • More importantly, the biggest risk of IVF is multiple births. I can't remember the percentages that he gave, but they were still pretty small, given that at my age they wouldn't recommend transferring more than 1 or 2 embryos at once. He talked a bit about this, in fact. He said he would recommend 1 or 2 embryos, depending on the quality of the embryos (unless we specifically want only one, in which case the clinic will honor that). He said that if I have very high quality embryos they would recommend only transferring one. He said that when they reviewed their internal data of patients who had only one embryo transferred, the pregnancy rate was a bit above 60%. Admittedly, this was a very favorable group for the most part. With low quality embryos, generally they try to transfer more than one, if available. He did warn, however, that with PCOS patients, they don't tend to see many embryos of that quality. Fair enough.
4. Financial Considerations: While they prefer not to be driven solely by cost for deciding on treatment, it is something that realistically needs to be considered.
   • In my case, since I have insurance, it's less of a consideration, but Dr. Amazing noted that since my insurance may be running out, this is still a legitimate concern. Also, since insurance coverage generally has a lifetime cap on treatment costs, you have to consider the overall financial impact of multiple less-expensive methods. So far, I've used up about $15-20K of my lifetime cap. I happen to have a very high cap on my coverage at $100K, but I know many people with a $20K cap. Certainly if I had no insurance, I'd have to be even more cognizant of the cost. As it is, I'm extremely grateful, and always completely aware of how the money's being spent, even though it isn't MY money all the time (though I do pay a hefty copay for the drugs, a small copay for each visit, and 10% of the cost of each cycle, so it's not completely free, either).

Dr. Amazing also confirmed that my thrombophilia panel came back negative, though one test was borderline. And then he outlined the protocol that I'd be using for IVF. With IUI, he was looking for 1-2 follicles per cycle, but with IVF, he'll be looking for 10-30 mature follicles per cycle. He said about 15% of their cases are cancelled due to under- or over-stimulation. He does not anticipate that under-stimulation will be a problem for me (but also noted that you can convert an IVF cycle to an IUI cycle if necessary). Compared to IUI cycles, that's a low cancellation rate. Cancellation for IUI (usually for over-stimulation) is more like 30%. Apparently, I had come a lot closer than I realized to having cancelled cycles. Three were close calls, including this last one. So I am grateful that at least I made it to trigger day.

Since I have PCOS, the main difference in my protocol is that once I start FSH injections, I will remain on 20 IUs of Lupron, while usually they reduce the Lupron dosage to 5IUs at that point. So here's what I'll be doing:

1. On March 1st I'll have my beta hCG. Presumably, it will come back negative*, which means I can probably expect my period by March 4th or so. Three days later, I will start taking birth control pills. I fully expect my migraine level to increase significantly about a week after that.
2. I will start taking Lupron, 20 IUs, during Passover (yes, my Rav approved this) so that I can go in for my Lupron evaluation immediately after Passover.
3. Assuming I am appropriately suppressed (likely, since I'll have been on BCPs longer than necessary), I will start FSH injections. This time I'll be taking Gonal-f, only so I can avoid the Follistim Pen. I have a hard time reading the dosage window on the pen, because I see double (long story). But it's all the same, and doesn't really matter which one I use.
4. I will, of course, be monitored for progress. Then egg retrieval (if we make it that far) and transfer (if we make it that far)
5. Progesterone in Oil (PIO) for 18 days from retrieval to beta. If beta is negative, stop PIO shots. If beta is positive, I can switch to crinone… I think I might prefer the PIO shots, to be honest!
6. Lather rinse, repeat until positive beta.

So, my friends, let the fun begin! Yippee.

P.S. I'm kind of embarrassed that this post is so long. But fortunately I am lazier than I am embarrrassed and I'm not willing to go back and edit out the useless stuff. Also I'm tired, having only just arrived home from Orlando. Here's a tip: Do not ever take Air Tran. Ever. They lost my car seat. I'm not kidding.
_____________________
* If the test is positive, well, that will be cool and yet, somehow, annoying. Something in me says "if the test is positive, then I'll have to wait another 4-6 months before I have to start this crap all over again and they might make me revert back to IUI, and oh-my-god-why-on-earth-doesn't-it-even-occur-to-me-that-it-could-be-a-NINE-month-break????"