#(she was. expensive as hell. I cannot afford to snap one of her strings)

[sweet-as-kiwis]

Heist time >:)

[scriptmedic]

Nothing Like a Lightswitch: M’s Husband’s 3-Month Coma (Part 2)

A week ago today, we published the first half of an interview with “M”, whose husband was in a 3-month coma back in the early 2000s.

It’s one of the posts I’m proudest of in the history of this blog.

This post is even better.

In this half of the interview, M shares what she wishes writers would and wouldn’t do when writing about comas. About survivors. About the strain on families and purse strings.

M, if you’re reading this, thank you. Thank you again.

Aunt Scripty: What would you tell writers to make sure they get right when describing comas, and their care?

Doctors and nurses do encourage family to talk or read to the patient. Having arguments in the same room is strongly discouraged.

They will kick family out if they deem they not taking care of themselves. Family is asked to leave for a little while on a fairly regular basis so the nurses can do their jobs without family or friends being underfoot. The nurses will also come in regularly while the family is there to do a regular check and change IV bags and such.

I did not actually see the more invasive parts. (Moving the patient to avoid bed sores, dealing with bodily fluids, and for the life of me I cannot remember what they did with solids.)

The family or at least the person who is in charge of making medical decisions will be meeting with the doctors regularly for updates they will also like get called for emergency decisions while not at the hospital.

Those decisions can be many and varied. In my experience it was mostly, we need to do x, and we need your permission to do it.

The main point I would insist on is that there is no miracle, “wake up and they are okay.” It is not quick and it is not pretty.

I seriously cannot think of a single book or movie where their treatment of comas and the recovery has not completely snapped my sense of disbelief. Kill Bill comes immediately to mind as it completely doesn’t work that way.

Whatever put them in the coma doesn’t just disappear when they wake up. If it was a medically induced coma it still doesn't erase the original reason the doctors decided to put them in the coma.

The doctors really don’t want to put someone in a medically induced coma.

I also want writers to realize that awake and aware are two separate things. Awareness also has several stages. The whole “someone wakes up and begins to talk” thing needs to stop. That control over their body is also a gradual process (of course depending on the time in the coma and why).

Muscle loss is going to be a thing, even if it is a fairly short time. Weight loss will happen no matter what the staff does, partially because of the muscle mass loss. PT (physical therapy)  will likely be needed unless it was a very short time period. OT (occupational therapy) as well.

Nerve damage can happen! Even if that part of the body was not affected by the original cause for the coma. Bed sores are a real thing, it takes lots of repositioning by the nurses and luck to avoid them.

Depending on the length of the coma the patient’s body may have extra holes in it that will need to be closed and heal after their recovery is under way (GI at least). They are likely to need to be fed through said hole for a while, eating is something their body may need to relearn how to do.

If there was brain damage it can take up to two years to heal, if it’s going to. Though after that there is little chance of regaining lost cognitive abilities.

On the other side remember how much this disrupts the lives of family and friends, but also remember that these people have to somehow keep their own lives going enough to do things like pay bills (and possibly cover the bills for the patient) and feed themselves.

A lovely thing for writing is that this gives plenty of opportunity for people to take their stress out on one another or throw blame or form closer bonds.

People close to the person in the coma can get PTSD. Relationships that previously were good and healthy can blow up. Friendships can be lost.

As a side note, brain damage can cause personality changes. This can be huge or it can be things that only someone truly close will notice. For us his body language changed a lot. Which threw me for a loop. The little signs that he was open to help or not were not the same. Signs of frustration were different. The little shifts that use to mean he was interested or disinterested had changed as well.

Aunt Scripty: What were some things that happened that you didn't expect during his care? What did you expect to have happen that didn't, or were very different from your expectations?

The major surprise at the time was no one else had any idea of how this could have happened either. That it continued to not make sense to some of the best neurologists in the field. Looking back it make much more sense now, brains are weird and doctors don’t always have the answers we want or need.

At the first hospital they actually had him prone because of the pneumonia. That startled and scared the hell out of me.

I think by the time he was at [MAJOR MEDICAL CENTER]  I didn’t have any expectations, I was already shocked and confused.

Looking back something that does confuse me is that no one ever suggested that I or his parents find someone to talk to mental health wise.

 Aunt Scripty: Can you talk a little bit about the financial aspects? This can’t have been cheap.

Writers should also take into consideration (at least in the US) that Neuro ICU is not inexpensive. At the time just the stay in the ICU was over $10k a day and that was early 2000s.

Dealing with the insurance was a headache and a half on top of everything else. And we were lucky, our insurance was very good and did not have an upper cap.

After the first few weeks I had a direct number to call a specific person at the company so I didn’t have to explain the whole situation again and again. We still had to talk regularly.

One of the big things I remember was one of the drugs they wanted to try to control the seizures was new to the market. I remember the time release version came out a few year later. So at the time it was really expensive and the insurance refused to cover it at first but one of the specialists wrote up a detailed reasoning of why that drug in particular was important and it was cleared.

I don’t remember what the deductible or copays were but I paid those and had to pay for the transportation out of pocket but did get refunded eventually for most of that.

The eventual total was mind boggling and terrifying, I received the bills for it while the insurance company was still sorting out its end.

For just the stay in the Neuro ICU the bill was well over a million dollars.

That did not include the stay at the first hospital before he was transferred. It did not include the time once he was out of the ICU. It did not include the physical therapy that took months. It did not include the surgery he had to do to get the feeding tube out. It did not include the occupational therapy. It didn’t include follow up care or his meds, that without he would die. I think the meds would have been over one thousand dollars a month without insurance.

Besides the medical bills, life continued to go on around us. Student loans had to be paid. Even though our landlords were amazing and dropped our rent by an insane amount I still could not afford it.

His credit card bill still had to be paid on top of my own bills. I did not have access to his bank account and his parent refused to sign the paperwork that would give me access to pay for just his bills. Car payments still had to be made.

The constant calls from the hospital disrupted me at work so much and I was spending as much time as I could at the hospital that in the end I ended up quitting.

Again here I was lucky, I could move back in with my parents and had some savings. But factor in the gas and parking and car care for at least 6 months of traveling to the hospital or rehab everyday. Oh and food while at the hospital if I remembered to eat.

I had to fight the insurance to get him the physical and occupational therapy he needed to become functional again. Then continue to fight for his meds to be covered as they were changed many times trying to find the best combination.

So that’s where we stand. And personally, all I can say is holy shit.  

I’ll just be over here in the corner, crying softly and screaming at the American  healthcare system.

Thank you yet again to M for her time, her words, her experiences, and for baring her own burdens as the family of a coma survivor.

I encourage anyone with a similar story to reach out to me on Tumblr, or at auntscripty {at} gmail {dot} com. I would love to hear your story.

Be safe, be well, and I love you all.

xoxo, Aunt Scripty

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