Monthly Archives: August 2013

And iiiiiiiitttttt’sssss…..

…. Von Willebrand’s Disease. Type 1.

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Rewind. I was sitting in a hematologist’s office hearing the words ‘You’ve been dicing with death your whole life’. Wait. More information needed. Rewind further.

Birth did not go quite as planned. Actually the birth did – the postpartum period did not. My amazingly skilled OB (we still love Dr. Dryden to pieces, even if she isn’t Dr. Boswell) was torn, she wanted to be believe it was ‘just bad luck’ but could not believe that such extensive loss of blood could not be pathological, so sent me for a battery of tests. ‘On the off chance’. ‘Just In Case’. ‘To tick every box’.  8 vials of blood later (chance of a false positive anyone?) the results were in: they were suggestive of Von Willebrands, a condition where you either don’t produce enough Von Willebrand factor (a factor than carries factor 8, which is necessary for effective clotting) or where you don’t have any (I had some), or where you Von Willebrand’s was there, but it was’t very effective and so can’t recruit platelets into the clotting site.

ICU machines

Dear Tecas Children’s: Thanks for the blood. Love Lekki x

I now know far more about how blood clots than I am comfortable with.

So, off I went to Dr. Kelty Baker, who has an amazing reputation. And indeed – she was wonderful. Smart, funny, fascinated by hematological conditions and motivated to cure me. Unfortunately, her nurse wasn’t. This was the nurse who walked into the exam room where I was waiting, took my blood pressure and shoved a thermometer in my mouth, took reading and walked out, all without a single word. Lovely. Just lovely.

Dr. Baker felt it was Von Willebrand’s and asked if I minded having a genetic test to confirm. Me? A geneticist – mind? I’m positively enthusiastic. So we made a plan – I would have a genetic test done. This had to be done in Wisconsin for some reason (even though Baylor, just across the road, does this test). I would also (because we don’t know the full mutations contributing to Von Willebrand’s) have had some tests done which looked at whether the little Von Willebrand factor that I did have actually worked (the blood tests were borderline). Aaaaand, because of the fact that regardless of the cause, we would have to treat the fact that I did not have enough Von Willebrands, we would do a challenge to see if I responded to a drug (DDAVP) designed to increase Von Willebrand factor. All good. I agreed. She said that these non-genetic tests were only done in a field by a fairy under the full moon & I even agreed to this. OK, they were only done heinously early in Methodist hospital on Tuesdays and Fridays but that is basically the same thing.

Guinea pig at the ready

Guinea pig at the ready

Then we entered the vagaries of the American Healthcare System.

My insurance company said that Wisconsin was ‘out of network’ so I would in essence be responsible for the full cost, minus a teeny-tiny co-pay. Knowing that genetic tests can run into 1000s, I HAD to find out the cost. My insurance company also said that I should find out the name of the tests done at Methodist, to check that they were covered – or again, I’d be liable for the full cost as Methodist is not quite in network but some facilities are. It was complicated, but I called Dr. Baker’s office to get the name of all the tests – genetic and otherwise – to report back to my insurance company. And there I encountered the lovely nurse again. And problems ensued.

The nurse told me that Dr. Baker had ordered the following tests:

Platelet aggregation Panel ($256)

Risocetin co-factor ($184) and

Von Willebrand’s Antigen ($178)

I told the nurse that these were not genetic tests so at least one was missing, and furthermore that I had had already had these tests done for free in-network at Texas Children’s Hospital, so would she explain why they now had to go out-of-network. All she would say is ‘shall I tell Dr. Baker you won’t pay for these tests?’ over and over. Whatever I asked, she came back to that.

Me: ‘Are you sure these are the tests?’ Evil-face: ‘Are you going to pay for these tests?’.

Me: ‘ICould you ask Dr. Baker if I could have the tests done in network?’ Evil-face ‘You have to have these tests where we say. Can I tell Dr. Baker you will pay for these tests or not?’.

Me: ‘There is not a genetic test here – why not?’ Evil-face: ‘Look, are you going to pay for these tests or not?’.

Me: ‘I have test results for these. TWICE! I can read them to you’. Evil-face: ‘You have to have these tests. Can I tell Dr. Baker you will pay for these tests or not?’.

Eventually I had to say ‘well, no, I won’t pay for tests where the cost can’t be justified’ and she hung up and I never heard from the clinic again, until they wrote to my OB and sent me a copy saying that I couldn’t afford medical care and that they would help me when I came to give birth next, if needed.

NOT AWESOME.

So, I transferred care to Dr. Mark Udden. First up: his nurse treated me like a human – you know: told me her name, warned me before jabbing things into my mouth… things of that nature. The junior doctor was nice – he had a daughter born 5 days before Sam and had lived in Lewisham (the site of my London flat). OK, so not medical-care necessities, but a good sign nonetheless.

Dr Udden wears bright bow-ties. Awesome.

Dr Udden wears bright bow-ties. Awesome.

Dr. Udden was the best of all – he was practical and smart. He laid it down: I don’t have enough Von Willebrand factor. Although Type 0 blood naturally has less Von Willebrand factor, he would expect Type 0 to have levels at about 50-60% less than non-Type O, and I was at 32-34%. He suspected that my Von Willebrand’s was working fine, the borderline reduced activity in my tests was just indicative of not having enough. Genetics were fun, he said, but we were still going to have to treat the lack of Von Willebrands so why spend the money? So, I am off for a DDAVP challenge test to see if I respond to DVAPP by making more Von Willebrand’s factor. We assume I will. So from there on, they will check my Von Willebrand levels before giving birth next time, and give me an infusion of the factor while pushing. If I go for minor surgery, I will take DDAVP. If I go into hospital for an emergency: more DDAVP, infusions of the factor if extensive surgery is needed, or I am smashed to bits in a car accident or something.

I objected to all this drug talk. I pointed out that I had got this far and been just fine. Turns out hormonal contraceptive artificially increases Von Willebrand and I have been on those since I was 13 (due to heavy periods – another sign of Von Willebrand) so it had been masking any symptoms. Plus I had avoided any surgery except while pregnant (when I had dental surgery), and pregnancy is a time when you also produce more Von Willebrand, so I made it out without crazy bleeding. Lots of lucky co-incidences have got me thus far in life without incidence. Hence my ‘I am not sure I really need to do anything about this’ was met with ‘You’ve basically been dicing with death your whole life’.

Fair enough.

Unfortunately it is a heritable condition, and so we have to get Sam tested. But, my case is so mild, it is likely I am a heterozygote, meaning that Sam only has a 50% chance of contracting the disorder. And if he is not blood type O, he probably will be OK.

And I have to have my IUD out. The extra bleeding that goes with IUD and non-clotting blood is just a bad combo. It is true that things are pretty bad on that front, like today is Day 6 of my period and I still can’t get through the night without a horror show, but as I am allergic to latex and have a bad reaction to hormones, I was sticking it out. I am a bit stuck about what we will do now. Sam no. 2 anyone? 😉

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A year in Houston

Houston sunrise skyline

Sunrise over Houston

We have a bunch of anniversaries that come one-after-another in June / July (what? It is a long time since June / July? Hush now and keep reading). Our first anniversary occurs on June 1st and marks our move to Houston and into our new (our first!) house.

Hated saying goodbye to these guys (and their brother)

Hated saying goodbye to these guys (and their brother)

I remember the move so clearly. It my friend Rachel’s 6th birthday and the day of her birthday party, and I was miserable to be missing it. I had spent the previous evening with her and her siblings, saying goodbye. On the way home I had to pull over and get out of the car to collapse in hysterical sobs – I was so sad to be leaving my friends in Birmingham behind.

All packed up and ready to go

All packed up and ready to go

I felt better the next morning. We packed up the final parts of our grotty old apartment, wrangled several plants (one of whom got lost), 2 cats, a skittish and terrified Italian Greyhound (RIP little Walter), a 70lb Bernese / Mountain dog cross and a pregnant wife with her enormous pregnancy pillow into a cramped 2-seat Ford Ranger. And off we went.

To the OB.

baby scan 18 weeks

Looking good

Yup, making the most of our health insurance (which, due to Texas state law would have a 1 month gap)  we dropped in to Sabrina Wyatt at UAB to have our ‘is everything OK with the baby?’ anatomy scan. It was early at just shy of 17 weeks, but due to ‘staying remarkably slim’ (the doctor’s words, not mine, although I used them liberally for a long time afterwards) we could get clear pictures of our little Firework. It was nerve wracking as they counted veins and arteries, organs and heart chambers. But Firework was just perfect and wriggling happily away, so off to Houston (for real) we commenced.

It took 13 hours with stops (including a few vomit stops) but we drove up and although we arrived after 1 am, somehow the house did feel like home. The majority of our belongings were arriving my truck in a few days, but pleading pregnancy discomfort, Wes had bought a mattress decent blow-up mattress which we slept on. And so (being fridge- and utensil- less) began our almost 2 week take-out binge. I can barely eat at many of the restaurants we tapped during that time.

Downtown Houston

Downtown Houston

Houston has taken some getting used to. Instantly, I liked the anonymity and diversity of Houston. There was definitely a ‘look’ for women in Alabama – think manicured nails and colored styled hair, attractive, but fairly conservative clothes (no high fashion or sports gear), and always make-up. And it was definitely noticed on and commented on (both to your face, and behind you back) if you did not conform to this. I know it sounds crazy, but I was not the only woman I knew who felt pressure to conform to the ‘made-up’ look. It was immediately refreshing to have no ‘look’ to Houston, and for there to be a distinct air of ‘as long as you are not in my business, I will not be in yours’. I initially thrived a lot more, and relaxed and felt better about myself. I felt more confident, and I felt that my friends were truly my friends. Everything was more up front, and less judgmental. I maintain that I prefer this bigger-city attitude, but when I visited Birmingham recently I missed the smiles, and friendliness, and help everyone offers you.

Ecclesia smilebooth

Photo from church

But the diversity is good – Wes and I have been able to find more of what we like. Church was a big thing – I grew up with the “staid and stuffy” [not to me – I loved it!] Catholicism-lite that is Church of England / Episcopalian; think hymns, reciting lots of rote and staid sermons followed by long prayers. Wes grew up with the evangelical passion that is Assemblies of God. I felt uncomfortable with the huge displays of emotion in Wes’ churches (think breaking down and weeping on stage); Wes was bored by reciting the same thing endlessly at mine. I felt I was sometimes watching ‘The Jesus Show’ with no spiritual participation asked of the congregation, Wes felt the robes and rituals we sometimes encountered were ridiculous and against the word of God. A difficult problem to overcome, but with a lot of prayer we did – finding our home with Ecclesia. It is a good mix of interesting but thoughtful speakers, uplifting music combined with weekly sacrament. However, they have adapted the words before collection and communion to be shorter. I feel like we really think about being a Christian, and the church has a lovely focus on charity and giving (you know… actually being Christ-like). Most impressively, their stance on abortion is “As a church, we should focus on telling people what to do [be Christ-like], not what not to do”. And Sam loves the daycare. It really works.

Daycare extrodinaire

Daycare extrodinaire

With our limited budget and different tastes (think like the church problem) Wes and I found it hard to find places to eat in Birmingham – there are many more cheaper eateries here, where I can get salads and he can get pasta or something more hearty. We’ve enjoyed very authentic dim sum and good quality sushi (with raw fish) is never far away. Houston: I approve.

Something delicious for all

Something delicious for all

And a kebab better than London!

And a kebab better than in London!

My one beef with Houston is the huge urban sprawl of it. Look, big is not a problem for me. I lived in London. In fact, I like big (stop sniggering in the back). But I do not like everything being at least a 20 minute drive away. And if you want to go to three or four shops? They are all – yup, 20 minutes drive away. And 20 minutes’ long drive away. You want to go for a walk? Drive 30-40 minutes. For real. Wes doesn’t mind it at all – it drives me up the bleeding wall. I miss the UK way of driving to a shopping center, parking, and being able to shop, eat, have coffee and visit a bar – all without going back to your car. Really not an option in Houston (except a little bit in the very downtown… which is 45 minutes drive away, or in Rice Village which is hellaciously expensive, and still amazingly unwalkable). I like that the Bayou has a running track by it and is 5 minutes from my office. But apart from that – I hate driving to, from and between everywhere.

Nice little urban walk... 45 minutes away.

Nice little urban walk… 45 minutes away.

And the urban sprawl is such that if you want something less urban, a good hike or a good bike ride – you’re looking at 45 minutes or, more likely, a 2 hour drive. I miss being able to just jump to Oak or Ruffner Mountain as I could in Birmingham. And I am having to put my fingers in ears and sing ‘lalalalalalalala’ at Rick Perry (Go Wendy Davis!).

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All in all, Houston has a lot, but has taken a lot of adjusting to. I think it was harder to adjust to arriving pregnant and then having a newborn (kinda cramps the partying style). It also didn’t help that my new school does not have many postdocs, or students / faculty my age – UAB came with a built in social life. It has – and still can be – a lonely city. I don’t know if that is a feature of the coldness and sprawl of Houston, or a reflection of where we are in life (I say ‘we’: I am lonely and miss a big social group, Wes is in his element!). Wes and I are not wedded to staying here, but not devastated that we need to make it at least another 3-5 years to make financial sense. It’s no Colorado but it is no Baton Rouge. It will be interesting to see how I find it in another year’s time.

Dear Breastfeeding Mother

It's a boob. Get over it.

It’s a boob. Get over it.

Dear Breastfeeding mother:

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Happy World Breastfeeding Awareness Week! Breastfeeding can be tough emotionally, physically and practically – if you decided that this was best for your child and have been able to do it: awesome. I am pleased you are parenting as you want to.

In honor of this week please:

Keep up the good work! It is so important that parents get to raise their child as they wish to!

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Help to normalize breastfeeding. It is a great choice for many, and it is a shame that many people feel too inhibited. Please feed in public (covered up or not), or in your car, or in your home, or wherever you want.

Share your opinion on the benefits of breastfeeding. How have you found it? What did you enjoy about it?

Milk coma

Milk coma

Enjoy this unique time with your LO. I remember breastfeeding so fondly. In fact, curled up on the couch, nestled up to Sam, gazing into each other’s eyes – it is probably my favorite early motherhood memory.

Enjoy it. Revel in it. Be proud of it.

But

Please do not:

Have the arrogance to judge a formula feeding mother. Do not, DO NOT, assume you know the cost of breastfeeding to her. You know HER pain? You know HER emotional state? You know HER struggles? Like hell you do. Do not write some condescending ‘I understand those with a medical necessity to formula feed, but not those who are just embarrassed’. Have you felt HER embarrassment? Have you been in her shoes? No. Her shoes are not yours. So don’t judge them.

This took me over an hour to pump

This took me over an hour to pump

Do’t ever think a formula feeding mother is not doing her best. You are just not doing your best at stepping outside your own skin.

Ever forget that a formula feeding mother may feel tremendous pain / guilt / regret that she has ended up formula feeding (or she may be totally awesome and feel relaxed in her choice). Support her. Make her feel welcome. Make her feel normal. Make her feel the success she is, if she is doing the job of raising a loved child.

Misconstrue Science. Science has shown that breastfeeding is associated with lower rates of mild infections. It has failed to show that breastfeeding is associated with an increase in IQ, when the correlation between IQ and breastfeeding itself is controlled for. It has failed to show that breastfeeding is consistently associated with lower BMIs, or that it is associated with lower BMIs at all beyond childhood. It has never shown that if you force someone to breastfeed who did not want to, that there are any benefits.

This is both a terrible misunderstanding of Science, and an example of the cruel things formula feeding mothers have to deal with:

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I am aware that breastfeeding mothers complain about stares, and rude comments: I would take that over being told I was choosing to willfully endanger the life of my child any damn day,

Make judgments about how worse off her child is. Or I’ll show you my formula fed son, who slept through the night at 4 months, crawled at 5.5 months, stood unassisted at 6, spoke at 8, and (because I have a developmental Psychology PhD and F*&^ING know the original attachment theory, and actually know what it is, rather than guesswork) who I know is extremely well, and securely, attached to me.

Yeah, I am doin' OK thank you Mum.

Yeah, I am doin’ OK thank you Mum.

More than any judgement on me, or my decisions, it hurts me to the core when you think my child is not everything wonderful that he could possibly be.

Assume formula feeding is some grand statement about a woman’s parenting (or life) philosophy. She may formula feed and co-sleep, cloth diaper, home school or she may formula feed and use cry-it-out, Pampers and day care from 2 weeks. You do not know.

I formula feed and baby wear. Suck on that Judgmental Judy.

I formula feed and baby wear. Suck on that Judgmental Judy.

Assume that because you breastfed, you are a better parent. I know the Scientific literature pretty inside out. Whether it is your sleeping decisions, your weight, your eating habits, you daycare decision, your discipline method, your screen time (your lack of Seasame Street screen time), the family you have or do not have and how often you see them, the role model you are as a woman for your child, your body image, you decision to live in the city or rurally; – I promise that at least some of these are not optimized for your child. Do not think that breastfeeding is some magic panacea that wipes the slate clean and makes up for everything.

He's awesome.

He’s awesome.

Think that your judgmental words don’t make some formula feeders cry. I know, because I just today cried for an hour over this post.

So please, if breastfeeding is important to you: fight for it! I did. Be a brave, fearless, passionate, pro-active, advocating breast-feeder. If it is not: be a brave, fearless, happy, secure, comfortable formula feeder. But whatever your choice, be supportive, understanding, kind and realistic.

Perhaps this puts it more humorously.

And this page from a pro-breastfeeder has the best ending: “As Jill Churchill so wonderfully put it; “There is no way to be a perfect mother, and a million ways to be a good one.” So if you see a baby glugging a bottle or suckling a nipple, perhaps instead of smug judgement or tittering at her mother’s exposure, you might just smile and think what a lucky baby and what a great mom. ”