They choose vanity, we choose life

This picture appeared on my facebook timeline this week....


I get a lot of medical pictures and information coming through my timeline, it's inevitable when you consider how medicalised our life has become.  But on closer inspection I discovered this is not a picture of two people on IVs in hospital.  No, this is the actor Ryan Phillipe and his girlfriend relaxing while having intravenous infusions of vitamins and fluids in order to give them an energy boost.

Yes people, today I learned that time poor, rich people are paying to be hooked up to a drip in order to receive an infusion of vitamins and minerals which can potentially; increase energy levels, cure hangovers, restore a youthful glow and get your diet back on track....just google it, US, UK, you can now book a date with an IV drip.  They will even come to your house, your hotel, your office so that you can have your treatment at your very own convenience.  I even read about a "hangover bus" in Las Vegas which waits outside nightclubs.

My daughter, Daisy is hooked up to an IV drip of vitamins and minerals every night, the health benefits to her?  Life.

Daisy has intestinal failure caused by a combination of factors including; enteric neuropathy, pan-enteric colitis and gastroparesis, the bottom line is that her gut is unfeedable.  She cannot absorb and digest food so has to receive it all directly into her bloodstream.  This system of infusing a carefully balanced mixture of vitamins and minerals (and two nights a week fats also), is called total parenteral nutrition (TPN).

Maybe you have heard of TPN?  It's been on the news in the UK recently after two premature babies died and several were sick with sepsis after one of the compounds used to make up the TPN fluid was contaminated with bacteria.

That is the risk we, and the many adults and children who rely on this form of nutrition, live with day in day out.  The bags of TPN Daisy receives are compounded for her every two weeks, based on a prescription provided by the TPN pharmacist at Great Ormond Street.  I take blood from her central line and it's analysed to look at her precise requirements for all the nutrients that make up the bag.  For example as she is chronically anaemic she has a huge amount of iron in the bag, she has a lot of potassium and her b vitamins run low so these need topping up.  It's a precise art, and as you can imagine very expensive and time consuming to make up a totally individualised bag of vitamins and minerals which will keep my daughter alive.

Not for Daisy this magic, fountain of youth elixir the rich and famous are buying into, no after nearly 6 years of TPN she has been left with hair falling out, a dysfunctional and inflamed liver, chronic anaemia, permanent fatigue and a chest criss- crossed with scars from the central lines that have become infected and septic and have needed pulling out and replacing.  Even as I type she is battling a cellulitis infection around her central line site which nearly 2 weeks of antibiotic infusions has not shifted.  We now wait for an emergency theatre slot to pull this line and place a new one.  Each new line means that we are playing Russian roulette with her line access, without line access there is no nutrition...

So when I saw this picture, like all my friends in the TPN community, I was sickened.  We take a calculated risk day in day out to keep our children alive and for healthy people to choose to pay for an infusion of vitamins and minerals because of some perceived benefits just seems crass.

But there are other more sinister factors in play.  In the United States there is a shortage of some of the compounds of vitamins and minerals used to make up the bags of TPN.  Friends have been frantic with worry as some weeks their bags of TPN arrive minus some crucial element that their child's latest blood results shows they are in need of.  How are they going to feel when faced with this image?  Fine if you can pay, not so fine if you need this to survive...

And do these people who pay for what is essentially a beauty treatment understand the risks?  We TPN families do, we live with them constantly, we are reminded of them all the time and know and understand that it is a very thin and precarious line we tread every time we put up our TPN drips.  So what if one of these beauty clients developed life threatening sepsis from a contaminant?  What if their vein was burned by the dextrose in the drip or thrombosed or collapsed?  What if they had a reaction to the compounds because their body did not need it and they essentially overdosed on vitamins? What if it triggered a fatal heart attack?

They have made a choice to buy a treatment.  But for one community in the world it is viewed as a vain and immoral choice which owes so much to our culture of instant results and fixes.  If only life were as simple for Daisy, if only putting up her drip each night resulted in a rosy glow and boundless energy.  If only people weren't so stupid and shallow and were able to look beyond their small world.

I would love for Daisy to eat, hell I'd love for just to go back to having tube feeds of milk as she did in the first few years of her life, but it's not going to happen.  I would love to be able to choose not to have TPN in our lives, but it's not an option.

For us an IV drip will never represent a glowing skin, increased energy, a jet lag fix, for us it will always represent the difference between life or death.




9 comments:

jenniebean87 said...

I'm on TPN 24/7 and I agree.

Courtney Watkins said...

beautifully put!!!

sandra said...

Nicely said! Maybe word will get around, this is not for beauty or hangovers but for life! Don't take away from those who need it!!
S.O.

Stephs Two Girls said...

Oh that picture makes me feel sick too :( they should be ashamed of themselves, they have no need for that. Annoys me that any money which has gone into research to set up that money-making business could have been better put to use trying to save people who really need it. I can totally understand your anger and frustration, and we need to highlight this to the world. It's wrong. x

Tarodeba said...

Ugh. This frustrates me. I am a nurse and I have given TPN many times to dear patients of mine. Let alone a niece that has to have it. This is beautifully said. Ditto!! 100%!

ashley said...

My daughter and son both have gut issues and both depend on tpn for along time this is just wrong

janabratt said...

Seeing these rich people getting treatment they don't need makes me so mad. Spreading awareness is where it's at!

hannahphotography said...

It sounds like a rather foolish 'beauty treatment' - more fool them, looks like someone saw them coming.


Poor Daisy having to endure that every night :( It's true, people don't know how lucky they are to have good health.


My late and learning disabled sister died of kidney failure. It annoyed me, and still does, to hear of people going on stupid fad diets when the range of food she was allowed to eat was very small indeed.


Having said that, I once worked in the music business and you would not believe the number of famous people who would have injections of vitamins on a regular basis. The reason? They had eating disorders and weren't getting enough nutrients. Of course, injections of vitamins would not solve the problem, but it gave them the necessary 'boost' to perform a concert.

abstractLucas said...

Totally with you Steph. Smiler only (only!) needs a couple of weekly ng tube feeds now, and no peg feeds (though it's different when he's poorly of course), and the idea that TPN is being used because some daft people can't be bothered to eat properly is ridiculous. Why would you do this voluntarily? (Fab pic of Daisy though, looking very chilled).
Take care
Lucas

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