Anybody who read my first blog will probably remember that I was waiting to see the specialist today, Tuesday, in the hope that he’d have a solution (or at least a reason) for my breathing problems.
The good news is that I did make it to Tuesday; the bad news is that he doesn’t know what the problem is either. Nothing is making much sense.
He recommended hospitalization in a negative pressure, private room to give my body a chance to rest. The thought terrified me.
Before this last anaphylactic reaction my most serious reactions were actually when I was in the hospital in 2011/2012. As a result, I know that despite their best efforts, it’s impossible for the staff to keep my allergens away from me. Citrus, especially, is so prevalent in everything these days. Berries (also an allergen) are abundant at his time of year.
We agreed that I might not have a choice much longer, but that he’d let me continue to isolate at home as long as I continue to do nothing.
I’ll stay on the higher dose of steroids and do a much longer taper and he’s ordered more tests. So I’m basically still in a holding pattern of not being able to breath properly but not knowing why.
The asthma component seems to be under control (though I was informed that what I had considered stable for the past 8 years really wasn’t and that we’d be addressing that in the future).
To get to the specialists office, which was all of 2 minutes away, I had to over use my Ventolin (TM) inhalers. Not that they seemed to do much, which makes sense if the asthma component is under control, but I’m not sure what else to do.
So I wait for the tests and cancel my life for the next couple of weeks.
Which brings me to Grey’s Anatomy….
When this all started I had to find something to do that involved as little movement as possible. When reading was too hard I turned to Netflix and at the recommendation of a friend, have been working my way through Grey’s Anatomy.
For anybody who hasn’t seen it, Grey’s Anatomy is a TV series that follows Meredith Grey as she progresses from being an Intern to a Resident to the Chief of General Surgery at a hospital in Seattle.
Like many TV shows it centres on several characters and their lives and relationships. Every episode seems to include at least one death, sex between a new combination of characters and the doctor’s remarkable ability to identify, diagnose, test for and resolve complex health issues using innovative surgery within 44 minutes!
Having worked in health care I am well aware of the used condoms that janitors clear up daily in the supply closets but I’d still like to reassure anybody else watching, that in my experience, health professionals do act a lot more professional than they do in this show. It’s entertainment.
Which brings me to my thought for today. Where is the boundary between entertainment and education?
One of my medical conditions is Osteogenesis Imperfecta (OI). If you’ve heard of this at all you’ll know it as ‘brittle bone’ disease. One of the reasons that you may have heard of it is actually from Grey’s Anatomy.
Over a couple of episodes, in Season 11, one of the main characters finds out that her baby has OI and her and her husband decide to induce early and let the baby die a natural death, rather than carry to full term.
Now let me be clear, there are a number of different types of OI and the show did make it clear that the baby had type 2, the worst. The baby was experiencing fractures in the womb and even if carried to term, would be unlikely to live past 6 months, and that 6 months would be full of pain.
I have type 1 or type 3. The milder forms. This means that I experienced most of my fractures in puberty. That as I grew older I experienced less.
However, it also means that I live with an invisible disability that impacts almost every part of my body.
OI is a deficiency in collagen. Collagen is the building brick for the body.
So in my case, it means that I have:
Progressive hearing loss (also compounded by having Ménière’s Disease as well).
I am at a high risk of fracture and consequently have to be very careful with what I do and how I live. Several times a year I fracture the smaller bones in my body, mostly my feet, which I self-treat unless they’re displaced. Even then I’ll often put them back in place myself and just carry on with life, avoiding an ER visit.
The whites of my eyes (sclera) have a grey tint but not the shocking blue of type 2. Which brings with it an over sensitivity to light, and an inability for my eyes to adjust to changes in light as quickly as they should and consequently you’ll rarely see me outside without sunglasses.
My heart has to be monitored as I have a murmur as part of the OI.
I also have spinal curvature and severely brittle teeth which has meant hours and hours of dental treatment with pretty much all my teeth having had root canals. Several of which have had to be repeated and then treated surgically as well.
Just to confuse the doctors, who always think of OI as somebody with restricted height, I am of a normal height which is typical in Type 1. In fact, I’m actually pretty tall at just under 6′- but my Dad is 6′ 6″.
Types 1 and 3 come with respiratory problems too; which might help explain my current difficulties.
So this is what the milder form of OI looks like for me.
Type 2, the one presented in Grey’s Anatomy is the most severe form. It is frequently lethal at, or shortly after, birth, often due to respiratory problems. There are numerous fractures and severe bone deformities. People with type 2 are usually very short and their lungs are usually underdeveloped. Their sclera will be a vivid blue in most cases.
Grey’s Anatomy were absolutely factually right in how they presented Type 2.
I, personally, appreciated the way that they handled the story line. The mother is presented as a Christian who could not bring herself to terminate the pregnancy. She was about 24 weeks at the time, and as a doctor herself, knew that babies could be born viable at that point.
However, when she realized that her baby was experiencing fractures, and therefore considerable pain, while still in the womb, she was placed in an impossible position.
The script writers came up with a very humane solution which was to induce the birth and let the baby die naturally.
So I don’t have an issue with the facts or how they dealt with this specific example. Where I’m more confused though is in trying to work out where the boundary is for such shows between education and entertainment.
They never mentioned the Osteogenesis Imperfecta Foundation who work tirelessly to educate and support research into this rare condition.
They didn’t mention the 25-50,000 people that live with OI (or all types) in North America.
They didn’t mention the community of people, impacted by OI, that meet annually for a national conference in the US.
They didn’t suggest that the parents meet with other parents with surviving children with OI.
Most importantly, to my mind is that they presented OI as a disease that all the health professionals knew about. This is simply not true.
OI is a foot note in most medical students’ learning. If anything, health professionals will remember seeing a picture of somebody with Type 2 OI as the vivid blue sclera is pretty distinctive and memorable.
Therefore, I am the expert in my condition. I’m the one that has to educate repeatedly. To remind health professionals that a suspect fracture often won’t show on a standard x-ray as my bones are too thin (osteopenia) and that it’s better to treat as if it’s fractured and do imaging a few days later to confirm, than to not stabilize the bone.
I’m the one having to remind them not to pull or push on my limbs, or bend them into awkward positions, even for x-rays.
I’m the one having to remind them to use caution when inserting IVs, taking blood pressure, or performing other medical procedures to avoid causing injury.
I’m the one that has to remind them that I have the experience of my own body and that I can give good directions for the safest ways to lift, carry or reposition me; especially after a fall. (In my teens I broke my knee because people wouldn’t listen to me and insisted on lifting me after a fall; so instead of just having a fractured wrist I now had a broken knee to deal with as well).
Having dealt with dozens of fractures and medical procedures, I have a good sense of when a bone is broken even before x-rays are taken. Just like with my nose a couple of weeks ago. I knew that it was fractured.
The nurse on admitting didn’t. Because I went immediately to ER I had hardly any swelling at the time and no bruising yet. You had to look straight on at me to see the bend. Thankfully on that occasion, the ER doctor did listen to me and treated me exactly as needed and very well.
However, none of this was covered in Grey’s Anatomy. In fact because they chose to present Type 2, without any information about the other types and all the points I list above, they reinforced all the myths about OI.
8-9 million people watch Grey’s Anatomy. Many of whom will be in the health care professions or are interested in becoming a health professional.
OI is a rare disease. What a fabulous opportunity to educate people about this disease that was missed for the sake of a story line.
I understand that in Season 12 the same characters get pregnant again and I’m sure that there will be lots of drama about whether this baby has OI or not too.
However, I’m also sure that, this being entertainment, this baby will be healthy.
So I have mixed feelings. I love the fact that they raised awareness of OI in general. However, I wish that they’d done a better job of educating about all the different types of OI and that there are people living with OI daily.
Would that have made for a better show though? I don’t know. So just where is the boundary between education and entertainment?
Right now though, I wish that I was a patient on Grey’s Anatomy and that all my health professionals would be as knowledgable about OI as they were on the show, that they could run all the tests needed (including the tests that I’m waiting on) and get the results instantly, find the source of my problem, fix it and let me return to my ‘normal’ life within 44 minutes!