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North Carolina, United States
I'm a 36yr old, wife, wannabe mom, horticulturalist, halfass knitter, and sometimes runner, searching for my grace

Friday, November 20, 2009

Advice Needed

I just finished another phone consult with SIRM. My blood test results from the immune study showed a high level of activated Natural Killer Cells. The recommendation for treatment was Interlipid treatment with IVF.

IVF? This has floored me. We never talked about IVF before. I am reeling just from the prospect of this. No offense to my IF sisters who have gone to IVF, but I have RPL, I am a fertile infertile.

His reasoning for IVF was that they could control the timing and transfer the best embryo. He said they don't have data on interlipid treatment with natural cycles or IUI.

There is a lot to consider here. The SIRM clinic is NJ, and I live in NC. My clinic here does IVF but not interlipid therapy. The cost is a factor b/c insurance is not going to cover any ART and won't cover the interlipids b/c there are still considered experimental. Please any assvice will be heard, what do you think?


Grad3 said...

Hey there, I have been wondering about how you have been doing.

I am a fertile RPL'er as well. While my immune issues was LAD, it's still treated the same way NK is- Intralipid treatment. But I can't remember if they recommended IVF...

We did a natural cycle with Intralipid and I am safely pregnant at 32 weeks. We had a home health care service come out to the house to do the administration of the treatment. It was about $550 per treatment for 20ish weeks.

My thought is/was- I can get pg but I can't seem to stay that way. So to me it was an indication that our eggs/ sperm were healthy- if they weren't healthy I wouldn't get pg so easily. If we had attempted the treatment and it didn't work then it would be time to re-evaluate.

I was pretty anal about watching for pg signs so I could catch it early and start the blood work. If it went up appropriately after 3 consecutive 48-hour draws then we were going to start treatment.

We spoke to Dr. Sher in Vegas. He sent the protocol to me as soon as I told him I was pg, which I then sent on to my ob who ordered the meds through the home health care that we chose.

Emotionally and financially this is what worked for us- we knew what our reality was and thought we should go for it. IVF was the last option for us financially.

My 9th pregnancy is proof that doing a natural cycle with Intralipid can work. My son was our 6th pregnancy, a natural cycle, and he was with IVIg treatment (used before Intralipid came along.)

I know that it can be a scary choice- so just evaluate what you think is best for you and your husband. You two are the only ones who know that you are capable of emotionally, and sadly, financially.

Sorry this is so long!! Please don't hesitate to ask if you have more questions! Let us know what you decide... ~Hugs~

Willow said...

I used to go to SIRM in CA and they really push the intralipid treatment for NKCs, which I did have done, but when I switched REs was told was unnecessary (in my case at least) and potentially dangerous (which I wasn't told at all). You might want to get a second opinion--I had a really bad experience with SIRM (my dr was fired mid-IVF cycle, among other issues), so I am wary of them.

Also re: jumping to IVF--unfortunately that's pretty much the go-to for most REs. I was shocked by it too when I first went in for a consult and was told, at 27, that it was pretty much our only option. Scary stuff! My new RE actually wants to pursue IUI and other treatments with us though, so they aren't all like that...

Anyway, good luck with whatever you decide! All best wishes!

Grad3 said...

They did want me to do a treatment at o but it just didn't work out that way. It was the same with LP as well. I started taking pg tests when I thought I was was 11-12 dpo every 2-3 days(I was never sure exactly when I o'ed but I could typically narrow it down to a 4 day window.)

With both earth bound babies I received treatments by the time I was 6 weeks. We were comfortable with that because it seemed that our babies could live until 7 weeks w/ o help but not beyond (we lost heartbeats in the past). Does that make sense?

I think that SIRM did recommend IVF but I also believe that was partly due to Dr. Sher's concern about my mental well-being. I really liked Dr. Sher- he didn't sugar coat anything and just told me what he thought would work best w/o judgment. It's hard to remember that you are a major player in the decision making process and you don't have to do everything the dr says.

Again, don't hesitate to ask me any other questions- I will gladly help if I can. ~Sending warm hugs~

KuKd Chick said...

I wish I had some Assvice for you, but hardly feel qualified to give it (not that Assvice is, by definition, something one needs to be uber-qualified to provide). Looks like you've got some good feedback from other commenters with solid insight! I think you'll ultimately make the right choice that's the best thing for you.

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Andie said...

HI Amylynn,

Just stopping by and I am so sorry for all your losses.

I had the same reaction as you when being advised to do IVF for RPL. I don't necessarily agree with it. But I have been told by two different docs that it is about being able to know for certain there is an embryo there, and control the timing, environment etc. I really understand where you are coming from with this. I did do one cycle and I am not keen to do another.

For what it's worth, I have heard/read good things about SIRM and intralipids are the treatment of choice these days. IVIG is not used as much anymore. I read two blogs who have had success with intralipids. (I also know of one that has the infusion by the home care service that Grad3 is talking about, so that might be an option for you).

I am very intrigued and interested to read Grad3's comment, I would be very interested in doing natural cycles with intralipids!

HTH and look forward to reading more of your blog.