Intralipid Hiccup and Other News

Gratitude
I wish need to begin this post by thanking each and every one of you who reads my blog and supports me in my journey to have another living child.  I am more deeply grateful than I have words to express.  My eyes smart as I write these heartfelt words of appreciation.  Your kindness, compassion, support and love mean so much to me.  Thank you.

On the subject of gratitude, I would like to offer special thanks to Jasmine at Journey in the Woods – an infant loss and writing blog that speaks from and to the heart in the most intimate voice of a fiercely passionate yet deeply grieving mother – for nominating me for a Sisterhood of the World Blogger Award.  You can see her post here. I will write a post on the award, hopefully soon. Please stay tuned for that.

The Intralipids Hiccup

I will start this wee rant by saying that in the past eighteen-ish months I have developed and find no shortage of sources to fuel a thriving contempt for the public health care system in my country. I have been let down one time too many.

I got a rather unpleasant surprise yesterday when I visited my doctor’s office. I had booked this appointment in August. It was the first available appointment (and this is my family doctor, not a specialist). Of course it lands at the start of the week in which I finally expect to start my next (and prayerfully last) FET cycle.

I assumed that since my doctor is sympathetic (having seen me through 7 of my 8 miscarriages and our one successful pregnancy), she would make magic happen for me. She did just that on one hand (she gave me requisitions for blood and ultrasound that are for fertility treatments, which normally would cost me about $450 combined per monitoring appointment). I was anxious about whether she would do this (or be able to do it).

It never occurred to me that my doctor would not be licensed to prescribe the IV mayonnaise (intralipids or IL) that Dr. Braverman has recommended I have piped into my system weekly. Its ostensible purpose is to neutralize my unbelievably high Natural Killer cell activity and calm some of my systemic inflammation, both of which are believed to be contributing to my recurrent miscarriages and implantation issues.

Not only am I fully on-board with this recommendation (even if it ultimately turns out to be a variation of snake oil), I am terrified of not doing it (and doing it weekly) given that my NK activity levels are in the 98th and 99th percentiles in the 50:1 and 25:1 tests. I do not dare fail or refuse to pump liquid fat into my body to neutralize those NK cells given what has happened with my previous pregnancies. I will do whatever it takes to make this happen.

Which, as it turns out, means making weekly flights from the northwestern Canada to New York’s eastern seaboard (along with the related travel expenses and arrangements that invariably will include planes, trains, automobiles and possibly buses). Welcome to Plan B, version 37.0. I will have my first IL IV at Dr. Braverman’s Long Island clinic this Friday. He was gracious enough to walk through some alternatives for a Plan C on the phone and via e-mail yesterday but so far nothing is confirmed beyond me heading to his clinic every week for the next several weeks.

I should have bought shares in some of the U.S. airlines. Oh yeah, with what money?

Holiday season and winter are coming. I cannot continue Plan B through an entire trimester of pregnancy if I am blessed enough to get and stay pregnant during this cycle. So there will need to be a Plan C and I will need to implement it in October, after we figure out whether (a) our embryos or at least one of them survives the thaw; and (b) the transfer is successful. I should know that by roughly the third week of October (this is happening so fast all of a sudden. EEP!).

At the moment, Plan C options include:

1. Camping out in an Emergency Room at a nearby hospital and begging for mercy from a prescribing ER physician who will agree with Dr. Braverman’s recommendation for IL and approve me having them administered at said hospital’s IV Therapy Clinic. There are a few such clinics in my city, all seem to require a referral from a doctor with admitting privileges at the hospitals. My GP does not have those privileges, of course. My ObGyn has privileges at a hospital (the women’s hospital) at which there is no IV Therapy Clinic, of course.

2. A variation on item 1: Asking my GP to refer me to a doctor with admitting privileges at a hospital with a IV Therapy Clinic. I do not know if this is actually possible and the RN I spoke with yesterday at our healthcare referral service yesterday (who was remarkably sympathetic and put in 100% effort to try to help me) had no idea either and was unable to determine that from the records and databases available to her.

3. Travel to the U.S. or possibly a fertility clinic on the west coast in my own country where the owner/RE does IL treatments for his patients (which I am not). The travel cost of doing this is roughly equivalent and in some cases greater than me flying to the U.S. Dr. Braverman said his scripts/recommendations are “sometimes” followed by doctors at the Beer Center in northern California. There is also the possibilty of asking my former southern California RE to help out with this since he was willing to have me do one or two IL treatments during the FET cycle he proposed we do before I insisted I have immune testing completed before doing any more embryo transfers.

Yesterday I was stunned, scared and overwhelmed but relieved after Plan B fell into place. Today I am angry, bitter and resentful of the bureaucracy and delay and Kafka-esque absurdity that is navigating the Canadian public health care system for something as innocuous as intralipid infusions. I want to throat punch the public health care gods right now. You guys truly suck. If I were in control of your oxygen buttons, I’d be turning them off right about now.

On that positive note, let’s move on to item 3 on the agenda, shall we?

Hypnotherapy

Ah, zen. I cannot tell you what happened during my hypno appointment last night because I don’t remember anything after seeing the bright flashes of light and colour that mean Azulito (our spirit baby) had arrived. I will get the recording today sometime.

Apparently I did not speak this time although I was very animated and made a lot of facial expressions that convinced my hypnotherapist that I was in a good place and communicating with some one or ones. I believe that is true although I was a little disappointed to not remember this time, unlike last time. And because I did not speak aloud, the recording may not tell me much more about the communications I was having. I do feel quite certain I was communicating at least in part with Azulito and I am grateful that the feeling I was left with afterward was one of deep calm and reassurance.

I believe I have made the right choice. If I waver (and I will, because equivocation in this area is ingrained in me), I will remind myself of the Falcon’s guidance and I will listen to the hypno recording to soothe and reassure me. That way, I can befriend my fear rather than let it run the show.

Despite the IL hiccup and my general worry that this will not work, I am starting to get the tiniest bit excited about this FET cycle. EEP!

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29 thoughts on “Intralipid Hiccup and Other News

  1. Ohhh what a wonderful experience with hypnotherapy. Sometimes I feel like the moments I can’t remember are because my conscious self is too overwhelmed and needs the relaxation. Your subconscious will remember the entire session. Just trust in that. I truly hope you get something figured with the IL. Doesn’t any infertility blogger out there have a doctor husband, wife, relative or friend to help? (I wish I did)

    • Thank you, I’m sure you’re right about the subconscious. I felt very strongly as I was leaving for work this morning that our little spirit baby is with me, very close, right now. I’m so glad I had my appointment last night. Yesterday was more stress than anyone needs this close to a IVF cycle.

      That’s a good question about the doctor connection. I wish I had one myself… I think my childhood doctor still has hospital privileges somewhere and he’s still my brother’s doctor. I’m considering even calling him up though there’s no guarantee he’d even see me.

  2. Our RE in Ontario does IL treatment, so there must be someone in your area that does too. To be honest, I think he even has the nurses administer it, since he has the facilities for it. I would ask the fertility clinics in your area if they can recommend someone? I have faith that somehow this will work for you.

    • Thank you. Your RE may well be the one in ON I was thinking of when I said to someone yesterday that there are only 2-3 in Canada who do it (one in QC, one in ON, one in BC). My GP works with all 3 RE clinics in Alberta (her focus is prenatal/perinatal care, that’s why I went to her almost 5 years ago when we first embarked on this journey) and she said she’s never had a patient who did IL here. I think the clinic in my city has prescribed them but the wait list to even consult a RE there is 14-18 months right now (in the past it’s been closer to 2 years so this is ‘progress’ or a realization by others like me that it’s pointless).

  3. I’m glad Dr. B is being supportive and trying to help you navigate this cycle. But man, I’m sorry IL infusions are so difficult to obtain in CA–this surprises me. I’m impressed with your resourcefulness, as most people couldn’t or wouldn’t be able to pull this off–so much respect for your prowess and tenacity. I wouldn’t want to be your opponent in court! XOXO

    • Thank you, MLACS. Linda at Dr. B’s office just told me the IL infusions there will cost me $300; I hope to heaven these are covered by my insurance. He told me they are cheaper at his office than at Walgreens or the like but I’m not sure that’s true. I’m going to have to look around for the following week’s adventure. This is so absurd I can’t get over it, really.

      • From what I was told, it would be circa $300 at Walgreens and I think that’s the average price. But another blogger (F*ck Infertility?) posted today that she’s getting hers for $150, so I’d ask her where she’s going & see if they have an office on Long Island. XO

        • I know! You can get the IL from Freedom for $29. So $300 is highway robbery. But it’s way less than I’ll be paying in airfare, for poop’s sake.

          On the topic of tenacity, you reminded me that someone once told me that if I were a dog I’d be a terrier because they’re tenacious. I wonder if they really meant “yappy and annoying”?

    • Thank you! It sucks to get excited and then receive some really terrifying informed consent forms (that’s going to need a post unto itself I think) and a FYI that each of these IL infusions at Dr. B’s office is going to cost me $300 (which I’m not sure is insured, my meds are but I don’t know if the IV administration is or not). It’s like getting smashed in the mouth after beaming with excitement.

      Looking forward to more good news from you tomorrow!

  4. I am so happy that it seems like you have a plan! As for the IL in our province, I’m pretty sure my immunologist said they are incredibly difficult to get here. But, I’ll ask him next week when I see him, just because I’m curious and I suspect if we go to Dr. B we may run into the exact same situation.

    • Wasn’t your immunologist talking to you about IVIg, not intralipids? IVIg is highly restricted in Canada to my understanding. Rats, if he said that I could be in for a huge expense here if we are successful. I may as well take up residence in the US for the next 3 months. Dr. B doesn’t Rx the IL for everyone, I know several other patients who are not on them, including ones who have some (but not all) of the same diagnoses as I do. I think this is mostly for my very bad NKa levels. Those critters are going cracy and coupled with me lacking the genes to create a protective preganncy response, I think that’s kind of a big deal. Of course, I don’t have my certification in reproductive immunology (yet) so I could be mistating what the almighty Oz told me.

      • I’m pretty sure at this point you should be a certified RI! And i’m a year or two behind you in my residency!
        We definitly talked about IVIg, which is nearly impossible to get. But, I think he mentioned IL’s as well, but more in passing which is why I didn’t write about it more. It’s a bit foggy now that a few months have passed, but I’ll definitely ask him. Sorry I cannot be more useful right now.

        • That is totally fine, I appreciate you asking next week. I am sure they gave IL to my mom when she had her cancer surgery. It even looked like mayo in an IV bag. Honestly, why does this have to be such a headache?

        • Why is it such a headache, because evidently in Canada, there is not a single doctor (RE or RI) who specializes in RPL (which is rather fascinating that in our entire country there isn’t one doctor, at least not one I can find). I would think the 1% would add up to enough for there to be one doctor.

  5. Ugh! I’m so sorry for this latest hiccup! I never understood just how bad the public health system is there until I moved to the US and didn’t have to wait to see a specialist or even for basic diagnostic services. I just accepted this as the norm before, but I definitely don’t anymore. In fact, I sometimes wonder if I would even be alive today if I had been pregnant with my first pregnancy in Canada, where most women only get a couple ultrasounds during their entire pregnancy. Back then, I was 32 and was classified as a textbook pregnancy until I so suddenly wasn’t. And it was only after discovering that Holdon was so severely growth restricted at a routine check up/ultrasound that my doctor realized I was so sick and ran additional tests to confirm. If I hadn’t been getting ultrasounds at every appointment and monitored as closely as I was here, I’m not sure I would have survived HELLP. Of course we pay a lot for it here, but what good is publicly funded health care if you can’t get the care you need and are forced to travel elsewhere and pay out of pocket anyway. It just doesn’t seem right! And it seems like you have to fight with nurses and administrative staff constantly there to make anything happen. On the positive, I’m so glad you are able to make it work to be in NY for your pre transfer infusions, but I’m so sorry for the added stress and expense! Praying you can find a better long term solution for after your transfer.

    On a much happier note, I’m so glad your hypno appointment went well and you left feeling a sense of calm and peace. I agree with Awaiting Autumn, I’m sure your subconscious will reveal the entire session to you in time, but feel certain Azulito must have been with you because of the feelings of gratitude and reassurance you had afterward. Big hug to you my friend. Sending you so many prayers for your upcoming FET and with everything to come before and afterward to make it happen!

    P.s. I suspected before, but now feel certain you live in my home city. We will have to get in touch the next time I’m home visiting family. It should hopefully be sometime in the spring when little man is old enough to travel 🙂 I still regret having not arranged meeting up with you when you were here in SoCal!

    • Azulito is definately with me right now. I know he/she wants this to work as much as I do.

      About the P.S. – That is too funny! This isn’t my hometown – I was born in Ottawa. And I *hated* it here when my parents made us move here for my brother’s health when I was younger. I bolted at 18 and only returned when my mom needed help because of her health. She has been gone almost 10 years and in the meantime I moved back to Ottawa but back here again… because I’m CRAZY!!! And maybe because I was meant to meet the LP, my soul mate, and have the Miracle Toddler together.

      Did I tell you Dr. J. has agreed to some sort of refund? Such an odd duck, he never responded to my request but then Jackie emailed me and said “the accountant will be processing your refund”. I don’t even know how much he refunded but I’m glad he did. You can stop hating on him now. 😉

      Okay, that’s really unrelated, isn’t it? I just felt badly that you were so mad at him (I would have been if I wasn’t hurt at being dumped instead). I was also going to say however that the only two doctors that Dr. B has had help from with IL in the past are both in CA – one in Stanford, the other nearer SF. So maybe I’ll be seeing you if I can’t get something local happening. I’d rather fly to CA than NY! We will definately meet up one day, I am confident of it.

      • Wow, that’s interesting that they’re going to give you a refund! I’m so glad! I’ll have to let go of my anger now I guess 🙂 I was actually going to email Dr. J this week and tell him I’m pregnant and let him now how disappointment I was with how they basically just dumped me too and didn’t bother to even followup with me after my CP in Feb. I also still have my sharps containers and some left over meds that I don’t know what to do with with and figure they should be disposed of properly at their clinic. After I send that email, I will be able to let it go. I think 🙂 There’s just too much good going on now to spoil it with anger and bad energy.

        It’s funny, I still love Northern Alberta and my home city because it’s where I grew up, but I totally get it. Going back there in the winter is downright depressing now, and I’m so happy when I step off the plan to sunshine when I return to CA 🙂 It is funny where we end up though isn’t it? I never thought in a million years that I would end up down here. Who knows if we’ll stay here, but I’m sure loving it while we’re here! That sounds great! I’m not sure I’ll be able to swing going up to SF with all the visitors I have coming in the upcoming weeks, but yes! We will definitely meet up one day!

  6. Oh man, I am sorry about this hiccup. I can’t believe you have to go to Long Island weekly. You really need to catch a freaking break! I know that it will be worth it once you have your babe safely in your arms, but jeez, it’s a lot to ask of one person.

    On another note, that is so cool about the hypnotherapy. I haven’t had the chance to look into the links you sent me yet, but now I am all fired up about it! Is Azulito a name from one of your baby’s past lives, or just how it refers to itself in the spirit world? I can’t believe you have a name and everything from your spirit baby. So awesome.

    • Azulito is a nickname I gave him/her because whenever I sense our spirit baby is nearby or wants to communicate I see wave after wave of intense blues and purples. Sometimes that is all I receive other than a sense of baby’s presence. Other times I’ve heard words and music or seen images. I once saw a little boy and thought I was his mother, we were at a barbecue. I don’t know if that was another time in the past or an image of what is to come. I’m just fumbling along here, I’m no expert or real intuitive. 🙂

  7. That’s a heavy load to bear and I’m so sorry your plans went awry. I, too, worry about my embryos not surviving the thaw and the overall process of the IV mayo madness not working. I wish I had some sage words of advice but I don’t. I do however know you have a lot of people in your corner sending you hope and support (these comments are so uplifting). I loved reading about the calmness and assurance post hypnotherapy. Working to befriend fear vs letting it run the show is a message I desperately needed to hear so thank you for sharing.

  8. Wow. This is insane! I am glad you have some alternate plans and I am hoping that you get this all worked out so you don’t have to be so stressed out. I enjoyed hearing about your hypnotherapy and look forward to hearing more about it. Hugs to you! ❤

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