Medical Stuff · Multiple Sclerosis

A Bunch of Fertility Stuff and Some Whining About MS

Priming with Omnitrope (human growth hormone) and LDN officially began Wednesday night. I spent that afternoon engaging in some mild hand wringing, hoping that the snow “storm” in my area (aka, 1″ or less of snowfall) wouldn’t delay the delivery. After a small snafu with getting the Omnitrope mixed up since the pharmacy sent no instructions *whatsoever* I was able to do my first injection.

Sub Q injections are old hat for me. I had to do them daily for over 2 years when I took Copaxone to manage my MS. I’ve taken a couple of sub Q shots since starting TTC, Ovidrel and now Omnitrope and each time I reflect on how horrible the Copaxone shots were in comparison. I know for many people the fertility shots are very difficult and I do not mean to minimize very valid feelings about doing shots.

I know I’m on a tangent here but if you can imagine a shot that has a long needle, that is filled with at least 2cc’s of fluid and that literally burns going in, that’s what a Copaxone shot is like. Then, after the shot is done the site starts to swell and turn red. It feels like a bee sting. After that goes away (20 mins to a few hours), then comes the bruising. Imagine doing that every night for years. Considering that is my experience with sub Q shots I was almost giddy after taking the Omnitrope. And it also really validated how awful Copaxone is and how there is no way in hell I am doing those shots again. Even though it’s the only MS medication that is safe for pregnancy. Still not doing it.

Anywho, I am also taking LDN and I’m really hoping that this medication will help me get pregnant and also help manage the fatigue I have from MS. Lately it’s been substantial. I’ve had the mildest of colds you can imagine but any drain on my energy stores is enough to have a major impact on me. Getting out of bed is stupidly hard and I get so frustrated with myself. Ugh. LDN is sometimes used by MS patients to help with their symptoms so I’m hoping that I am going to get a two-fer with this one.

Which brings me to my TSH labs. My number was 3.8 which is technically still in range but high. For fertility they want it under a 2. Lower is better. So I am now also taking a thyroid medication for subclinical hypothyroidism. Also hoping that this will perk me up some and give me some energy as well as get me pregnant. Another two-fer, perhaps 🙂

Thanks for reading my stream of consciousness post. Mostly I’m just passing the time waiting for CD1 to show up so I can truly start the IVF cycle. I’m on CD 10 as of today, so I’ve got a little over 2 weeks to go. 😀   I’ve got an update about our known donor as well but this is long so I’ll save that for another time.

Stay warm in this weather, y’all. My city is basically shut down right now because a small bit of snow fell last night. Most places would scoff at our overreaction, but this is what happens when people drive in the snow in my city:  raleigh snow storm

Be safe out there!

 

Catch Up Post

Makingaybies: a Year in Review

It’s been one year since I created this blog and began trying to get pregnant. I don’t really know where I thought I would be at this point way back then, but it does feel like I spent most of the year stressing out about one thing or another without much to show for it in the end. I think that’s one thing that is hard about trying for a baby– the options are truly binary. You can’t be half pregnant. You are or you aren’t. It worked or it didn’t. For us it has been the latter.

To recap the year, I made a total of 5 attempts– February, May, August, September and October. Of the 5, only May and August were well timed home inseminations however, May was a shipped cycle which puts it’s effectiveness in question. October was an IUI with sperm from a cryobank (not our known donor) that did not take. Altogether, that gives me 2 truly well timed cycles– August and October– where I can assume that sperm quality was not an issue.

Those numbers are abysmal and upsetting to me but I have to remember that I also underwent too many ultrasounds and labs to count, corrected my luteal phase defect with letrozole, had the dreaded HSG, and had a thumb-sized polyp removed from my fist-sized uterus. I didn’t know that having a baby would involve so much prep but it did. For me anyways. So I am reframing my disappointment into acknowledging that 2017 was about laying the groundwork so that we can be successful in 2018.

So far this year there is plenty to look forward to. I start my priming cycle of human growth hormone (Omnitrope) and Low Dose Naltrexone (LDN) on Wednesday, 1/3. And then as soon as I start my next period I will begin the stimming meds for IVF. I am projecting that the retrieval will be sometime in early/mid February, which seemed like forever before but now seems like no time at all. I’m such a bundle of emotions about the whole thing. Last year was so frustrating because it feels like I spent most of it waiting. Waiting for a procedure, waiting for the donor to get back from a trip or vacation, waiting for my cycle to start after the meds stopped it. This year it almost feels like things are moving too fast now which is scary, yet exciting.

I wish you all a happy new year and hope it’s the best year yet for us all. 🙂

IVF

IVF Consult

This morning at 6am we had a consult with a fertility clinic doc that is in New York. They offer very affordable IVF rounds and work with out of state patients frequently. The consult went well and now K and I have a decision to make– stay with our current clinic or try this one. I think if we continue with our clinic we will end up paying slightly more. The NY clinic is much more affordable but when you add in travel costs and dog sitting then it’s not much less expensive. Plus we would need about 7- 10 days off of work. K could basically work remotely for most of that but for my job it would be very hard to be gone for that amount of time.

We discussed IVF protocols and he seemed to think that the agonist medications won’t be a problem for me since I have MS. He recommended something called low dose naltrexone (LDN) which is a medication that many people with MS take. He said that he has all of his patients take it because it’s great for immune modulation, and for some patients with infertility this can help if there is an underlying autoimmune issue. It’s a medication that I did quite a lot of research on when I was dx’d with MS and ultimately I felt like most of the claims of efficacy seemed to be anecdotal rather than evidence-based. Plus because it’s not a standard treatment it’s very hard to get a prescription for it from a neuro. However, it certainly wouldn’t hurt my situation to try it and if it helps with fertility at all I’m game. If I’m lucky it will be the magic bullet I’ve been looking for to help with fatigue (one can certainly hope!).

He discussed the protocol with us some and I think I need some additional questions answered regarding his recommendation before proceeding. The biggest thing that sticks out for me is that the RE recommended that I do an entire cycle of human growth hormone prior to starting the IVF cycle and meds. He felt since I am 37 that this would give me the best egg quality. I don’t have any known issue with egg quality so this would be a proactive measure. Of course, you can’t really know about egg quality until you start extracting them and trying to turn them into embryos.

What that would look like is I would wait to start my period (projecting around the 1st but I don’t really know because I haven’t been tracking) then I would start with HGH. When I started my next period I would begin the monitoring, labs, and meds in preparation for retrieval. That would put us at transferring around mid February or early March. I feel so ungrateful for saying this but I don’t want to wait an extra cycle! And even more bratty I really feel strongly that I don’t want to have a baby in December. I know that’s silly but for whatever reason I’m hung up on it. Plus I’m just so tired of waiting. Anywho, if doing HGH means we have a better chance I’ll do it.

The rest of what he said was pretty standard. I will need to do a saline ultrasound or something. He said he wanted to do a recheck of my uterus since I have a history of a polyp and he wants to be sure that everything looks good before proceeding. More tests, but it does make a lot of sense and I am on board with that too.

All in all, things felt really good and I liked how up-front and honest he was about things. For instance we discussed INVOcell which is something that my current RE was pushing on us heavily. He said he thought it was “hogwash.” While I know it’s worked for some, his clinic did not have any pregnancies from it and neither has mine. That all just really validated how we were feeling about INVO and I’m glad to close the door on that discussion.

I’ve felt like my current RE has sort of trickled out information to us and it has been really frustrating to feel like we aren’t getting all of the information we need. For instance, when we started monitored medicated cycles I didn’t even know that’s what we were doing. She never said to us “I am going to start you on medicated cycles and we will monitor you with ultrasounds on day 3 and day 10.” So I was completely surprised when I needed an ultrasound and it was a mad scramble. In response to my request for better communication from her she wrote that I had an informational print out in my portal (somewhere that I also didn’t know about) that I should have read.  :/ So ya, having a doctor who tells me upfront what we are working on and what needs to happen when will be really nice.

Now K and I need to sit down and look at things like stats on the clinics and crunch the numbers to see which place we would like to work with. Both have plusses and minuses. Our current clinic is local so that’s a plus– no travel costs, plus they already know us and we know them. On the downside, we haven’t really enjoyed working with them and their IVF is pretty expensive. The NY clinic has much more affordable IVF and they are comfortable working with patients who travel. They also seem at this point to be better communicators overall and it feels like they are proactively addressing things like poor egg quality due to my age. I’m unsure if we want to pursue more consults locally because I think the costs will all be pretty similar. But not traveling would be a big benefit.

Has anyone reading used HGH as part of their IVF cycle? What sort of protocol did you do? Was it a cycle before you started stimming meds or did you do it in tandem?

Fertility Center

Things Have Gotten a Little Wild

K and I have run into what I can only describe as a clinic guided by the principles of religious fanaticism. We have been told by a local-ish fertility clinic that science does not support the safety or efficacy of reciprocal IVF and therefore this clinic does not offer it. Oh, but they do of course offer IVF with donor eggs (just not my SO’s, apparently). I am trying really hard to wrap my head around this discriminatory fuckery and not feel completely gaslighted. Also, I should mention that at no point did I actually request information about RIVF because SO and I haven’t been interested in pursuing it. She just felt the need to tell me all about their stance on it because I am a lesbian. Also, known donor sperm is out. I wonder how the straight couples feel about having to use anonymous donor sperm? Or did she just mean that known donor IVF just wasn’t available to me, as a lesbian??

 

I spent all day trying to decide if I was making more out of this than I should. So today I did some Google searching and K found the FB page for their clinic. Turns out this is not the first time that they have tried to turn a lesbian couple away from treatment. Coincidentally, there was a reporter’s number on their page so I took the liberty of calling the reporter and leaving a message (don’t mind if I do!).

 

The woman I spoke with at this clinic, while she didn’t outright say that she didn’t want to work with us as a gay couple, she was very quick to suggest we seek treatment somewhere else and she made a point at the end of the call to let us know about their cancellation policy. Part of me wants to keep the appointment and demand that they provide us treatment. But the other part of me doesn’t want their bigoted, hateful hands touching me or any of my embryos.

 

I just have no fucking words. Unbelieveable.

Catch Up Post · IVF

New Things and More Waiting

I haven’t really had anything much to post as K and I consider our options. It’s been pretty quiet and super nice to not have to think about fertility stuff all the time. We have been slowly working our way toward a plan for IVF. I upped my short term disability plan for next year hoping that I will be pregnant then and actually need to use it. We are both taking on some side work to bring in some cash. K has a pretty lucrative freelance job lined up so that’s exciting.

Last week was our anniversary so I surprised K with a fun day trip to an island where wild horses live and you can collect large beautiful seashells. It was a wonderful day. We both enjoyed it tremendously. It rekindled our passion for travel and adventure. Since moving to the East Coast we really haven’t had much opportunity to travel. Last summer we had hoped to do a 3 week trip in Southeast Asia but it just didn’t work out. K was crushed. We took a fun trip to the Florida Keys instead. That sort of made up for it… sort of.

We’ve both been thinking for some time now that where we are living now is not at all where we want to be. We are longing to move from here, either back to the West Coast or to Hawaii. Of course that complicates the baby plans. K and I were chatting tonight about that and there are just so many directions we could go it’s hard to know which to choose. But as with any big decision in life, I’ve found it’s more about putting one foot in front of the other and being present in the process that gets you there. Plans are great but they can be crippling too because there is no way to control all of the variables and it’s easy to get paralyzed worrying about a potential barrier far down the line instead of focusing on making the decision that lies just in front of you.

All that said, which direction we choose will be heavily dependent on the baby timeline. There are a few things that we are working through in order to make that happen. The first is that our current fertility clinic for whatever reason is exorbitantly expensive. We live in a metro area but it is by no means cutting edge or a huge city. We do have a very prestigious university near us with sizeable medical and research facilities. However the university is not directly affiliated with the fertility clinic that we use.

I have looked around a bit at prices to see how our place stacks up. One thing I have learned is that the only consistent price for any of this is the medications. Those seem to be running in the $4-6K range no matter the clinic. Aside from that it’s wildly different from place to place. For example, we paid $1700 for our recent IUI. That price does not include the sperm. That was an additional $900ish plus shipping. Altogether, it was a stupidly expensive IUI cycle. For IVF at my clinic with a discount for being a “public servant” the IVF quote we got was $18K. I can’t remember if that included meds or not. Either way, that’s damn expensive. And that quote was for a retrieval and one fresh transfer. Additional transfers were $4K. They do not offer shared risk programs or package deals.

Knowing how different the prices can be I wanted to see what other options were out there. I found a fertility clinic about 2 hours away that has an IVF special where the procedure plus monitoring would be $7800 plus meds. That’s already about $5K cheaper than what my clinic is offering. Another place out of state offers a single cycle of IVF for $3900 plus meds. We decided to get a phone consult with the out of state clinic but they are booked until mid January. I had hoped that we could get the consultation and any initial testing out of the way now in order to time the meds so that we were ready for a retrieval in early January. I’m pretty bummed to put everything on hold for so long. My fingers are crossed that there is a cancellation so we can get things going sooner than mid-late January.

I will probably call the other clinic tomorrow if I have time to see about a consult with them too. It would be such a relief to get everything going as soon as possible so that we can start the new year with retrieval. Though it costs more I think it would still be a good option since it is closer– less hotel costs, no flight costs, etc. Plus, we need to have some options to decide which clinic we would prefer to work with and review their stats.

Thinking about moving, we might be crazy thinking of piling it on top of pregnancy and birth and new baby but what can I say? It’s really hard for us to sit still. But as I said, that decision is many steps ahead of where we are now. I’m trying to remember that so that the frustration of *more* waiting doesn’t creep in. Can you believe that it’s been nearly a year since K and I decided to try for a baby? Anywho, that was my stream of consciousness update, thanks for reading. 🙂

BFN · IVF

13DPO

Well, we tested at 11DPO and again this morning 13DPO, both stark white negatives. Sometimes I wish I would get a defective test just to see what it looks like when I get a second line. I know it wouldn’t actually be a useful second line and when I discovered that the test was a false positive I’d be sad. It’s a strange urge. TTC is strange, indeed.

 

I’m calling it for this cycle. No baby. Again.

 

I’m not that sad (ok fine, I’m a little sad!) I’m just mostly disappointed that we have to spend more money that we don’t have on this. And then of course I get upset that the only thing that I am constantly worrying about throughout this entire process is the money. How much it costs. How long we are going to be making payments on this.

But worrying about money apparently doesn’t stop us from deciding this morning upon receiving a negative pregnancy test that the next step is to pursue a loan for IVF. Have we gone completely insane? Possibly. 😀

IUI #1

And Now We Wait

Labs showed that my LH was not surging yet, so I was instructed by the RE to trigger at 10pm Friday night and arrive at 10 am Sunday morning for the IUI. Friday evening K and I went out to see a Halloween double feature of Hocus Pocus and Beetlejuice at a local historic theatre. Outside there were handlers from a wild bird sanctuary who had some type of vulture, an owl and a raven. They were SO COOL! I wanted to hold one so bad but we were late. K hurried us in (she’s definitely better at managing time than I am) and we found our friends. At 10 pm, just after intermission I snuck off to the bathroom and did my trigger shot.

Sunday I started getting the stirrings of baseball gonads (that feeling where your abdomen swells and your insides feel like they blew up like a balloon from the trigger shot) on the way to the clinic, so I think that means the timing was good. The actual IUI was pretty easy and on par with a pap smear, though I felt that the placement of the speculum was slightly more uncomfortable and the tube they pass through the cervix was slightly reminiscent of the HSG. Luckily the whole thing lasted maybe 5 minutes and it was over.

Now we wait.

I’ve got some wonderful friends sending all the woo, manifestations, thoughts, prayers, intentions, etc. my way. With any luck this will be the one. 🙂