I’m definitely no doctor, but I see a lot of them, so I thought I’d share my newest learnings.

I’ll start with the back story – I grew up being told I had exercised induced asthma, because every time I played soccer or ran I ended struggling to breath. Asthma runs in my family (in fact, my sister nearly died of an asthma attack as a child, and ended ups ending a few weeks in intensive care fighting for her life). So, given the family history, and the fact that my breathing problems occurred when I was exercising the pediatric doctors just put 2 and 2 together to get there version of 4.

I was a pretty active kid, so this sucked, but was controlled with inhalers. No big deal, at least not compared to my sister.

While, as an adult, I moved cities and started having problems just being alive. This completely sucked. So, my doctor referred me into an immunologist. The wait time is normally 2 years without being in an emergency situation. But, I got lucky, and a new doctor opened a practice in our city. I got an appointment within a few weeks!!

Well, very quickly, this brilliant doctor figured out that yes, I did have a type of asthma, but it was not exercised induced, rather is was allergic asthma. Turns out, I have an incredibly sever reaction to Texas blue-green grass – you know, the stuff that everyone plants in the yards, that is not natural, at least ts not natural where I live.

So, I did 4 years of allergy shots to build up a resistance to grass. 1 shot per week for 17 weeks followed by 1 short every 4 weeks for up to 5 years. This was no small commitment!

Once we started trying for a family, we decided to reduce the strength of the shots, so they were less potent. The shots, are perfectly healthy for pregnant women and the baby and in fact may provide long-term health benefits for the baby. However, we dropped the dose because in the rare case that I had a reaction they would have to pump be full of drugs that would likely kill the baby. So, being responsible parents, we dropped the dose to be safe.

Anyways, after our first 3 miscarriages, I decided I needed to stop the shots altogether. I decided enough was enough, and what if there was a link, and this was the problem? Well, 2 more miscarriages later I am quite confident, just as my doctor was the entire time, the shots were not the problem.

But, to the point, I saw my immunologist again this week. We talked about the fact that my grass allergy is back and annoying me (although, better than it was before the shots), but we also talked the recurrent pregnancy loss (RPL). There is a lot of suspicion out there in the world of Google, that RPL may be linked to some sort of an auto-immune reaction. Of course, the RPL tests, including those for auto-immune diseases, say that we are perfectly healthy. But, I wanted his opinion, as an immunologist, on what else could be going on. And, since I already had an in to see an immunologist without a 2 year wait or choosing to go out of our country for more expedient treatment, why not take advantage of it?  So, here is what I learned:

  • He confirmed, that we know that I have a strong auto-immune reaction to allergens and foreign substances in my body. This has been proven with my reaction to grass and with my hypothyroidism.
  • We need to get my current allergic response back under control. I am using multiple nasal rinses, and gel’s – oh what fun. I should mention here that I despise spraying anything into my nose, I may hate it more than anything else in the world. But, I’m on a strict regimen to try to clean out my sinuses and help relieve the irritation.
  • They believe that there is a link between gluten and auto-immune reactions. In fact, it’s less the gluten specifically, and more the herbicides used on our wheat crops. So, if this is occurring within me, then my body is fighting foreign substances and may be choosing to fight the placenta when it develops as well. There is not enough data on it, and its weak science at best. But, as he said, it won’t hurt to try going either gluten free or going purely organic or both. He made it clear, that it is not a gluten allergy, rather this is about quantity, and so I can still use our toaster that has gluten in it, but just don’t eat gluten bread slices. So, time to bring on the expensive food.
  • IVIG – Google this. Again, it has very weak science to say it will work with RPL, well, it actually has virtually no science. But, what it does have is the knowledge that it will improve my health as it reduces the ability for allergen anti-bodies to attach to cells, because there will be more healthy cells in my body completing to attach at the receptor sites (okay, this one is very science based for me, so forgive me if I have used a few words inappropriately). So, theoretically, it should help to support a healthy pregnancy. But, there’s a catch, and it’s a pretty big one. It can only be administered in hospital, another doctor with hospital rights would have to approve it knowing that there is little science behind the link, and without approval it would cost us $7,000 per IV treatment, and I would have the treatment at least once per month, and potentially twice per month, for about a year. So, my basic math says that would cost us $84,000 – $168,000. Ouch! But this doesn’t matter because without the aforementioned medical approvals, I couldn’t get it anyways in this country, even if I were willing to pay out of pocket (sort of like chemo-treatments, you cannot have them just because you want them – although I’m not sure why you would, but anyways). So, even if we decided we were made of money and could afford this treatment (which we absolutely cannot), we couldn’t have it. But, he may be able to make this happen, if our RE is on board. It’s a long shot to say the least.
  • Xolair is for those with allergic asthma. This product is about $1000 per month, and is rarely covered by our medical benefits. In fact, although 5 years ago I was viewed as an ideal candidate for this treatment, we were unable to get approval. When we were unsuccessful and decided not to pay out of pocket, but to do the allergy shots which were covered. But, the catch with this one is that we can choose to use this treatment without extensive medical referrals if we are willing to pay for it out of pocket. Again, no guarantees it will work, but it definitely won’t hurt.
  • He also suggested a low dose steroid during the first trimester. He was leery about this one, but it might help bring all the allergens in my body under control, which would give the baby a better shot at making it.
  • But, here’s the most amazing part – he is going to do a lot of reading, and is sending a letter to my RE. He wants to coordinate my medical care between the two of them, if the RE is open to it! So, assuming we don’t end up pregnant sooner, when we see our RE next for a scheduled check-in in September, I am following up with our immunologist a few weeks later. If nothing else, I am happy to have 2 awesome doctors looking into this and trying to figure it out. If we get pregnant before September’s planned check-in, then we will obviously see both doctors sooner.

Although, I don’t have any answers today, I’m pretty excited to know that I have another awesome doctor on my side. Here’s to hoping with a bit more support, we can make the next pregnancy stick.

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A while ago, Justine, another blogger (I really enjoy her writing, and highly recommend others check out her blog) wrote about our numbers – our numbers as members of the infertility world. Numbers like:

How many months without success

How many failed medicated cycles

How many failed IUIs

How many failed IVF cycles

How many miscarriages

She wrote a lovely post about why these numbers don’t matter, and why we don’t need to carry them with us. We have all suffered, regardless of what exactly our journey has looked like. While, I acknowledge that numbers may not matter to everyone, after having this percolate in my mind I decided I had to take some time to share why my numbers do in fact matter, and why I will never forget any of them.

20140723 - Why My Numbers MatterEach one was a child. Each one ended in miscarriage. Each one has a different story, but they all share the following elements:

  • Each one was a life. A life that was never meant to be lived, but a life still.
  • Each one is one of our children. I will never forget my children.
  • Each one encapsulated our hopes and dreams.
  • Each one died much too soon.

I remember my numbers, not because I need to prove to myself or to anyone else that I have suffered enough, or that I have shame for our situation (I have no shame or blame for what we have experienced). They each matter, not so that I can say, look at us, we’ve lost 5 babies (that’s the absolute last thing I would ever say), or so that I can gain sympathy from others. But the number matters because they were our children and they were living. We saw heartbeats, we waited weeks for them some of them to die, we made parenting decisions to let go when we had to, we cried, we agonized, we worried, and we loved. We were and we are parents to each and every single one of them.  I am a mother to each one of our lost children, I have a connection that will never be lost to each one of them.

I have love for each one of my little children who didn’t make it. I don’t have names for most of them, I don’t have faces, and I don’t have tiny hands to hold onto. But what I do have is 5 stories, 5 physical connections, 5 distinct emotional links, and 5 separate memories of our time together. Memories of what was and what could have been.

I will never minimize any of these little babies by not counting them. Just, as no parent of living children would not count all their children (I’m yet to hear someone with 3 living kids, say they only have 2 for any reason). Just as those with living children recognize them as individuals, I do as well, and I think they have earned that right. In my heart, it makes no sense to forget them or to lump them together as our lost children, when each one was unique.

It’s just like if I’m asked how many siblings I have, I never discount my sister just because she died when I was 14. I will say I am from a blended family that results in me having 2 brothers, and 2 sisters. If people ask more questions, I will always say that my older sister was killed in a car accident. I do not hide my dead sister, because it would not be a healthy way for me to grieve by pretending she never existed.  And more importantly I would not be honoring her and her memory. She deserves to me remembered, just as my babies do.

Our numbers matter to me. Our numbers matter to my husband. And, I don’t really care what anyone else thinks about our numbers, because our children are our responsibility to care for when we could, and are now ours to remember however we want.

And one more reason why our numbers matter, that I cannot neglect to mention, is that we have to hold onto the hope associated with number 6.  We have to hope that the next one will work, or there is no point on trying.  We have to keep remembering that things can be different, and that maybe, just maybe, things will work out and we will get a healthy little baby.

We will love each one, those that are gone and those that are still to come, as individuals for the rest of time, and therefore each one counts.

If you like this post, please feel free to share it and please return to myperfectbreakdown.com to follow my journey.