Tag: iih

Post-op

I’m writing a few posts about my health issues.

It’ll make the most sense if you read from part 1: The problem with my head. Each post has the next link below it, this is part 4.

If you wish to talk to me about what I write, please do so via twitter: @antheaw, or on Facebook if we’re friends there.

It’s my birthday! And I don’t feel nearly as awful as I’d suspected! I’m getting a tonne of messages asking how I am which is lovely, if a little hard to keep up with.

As Monday the 12th of January (operation day) was the first day operating this year for North Harbour Hospital where I had my surgery, they weren’t open when we arrived. There was one other patient waiting outside, it was very strange, and still dark at 5:45am.

When we were shown in, I was taken to my room first and given a gown to change into. I promptly put it on backwards. I had compression stockings put on (I have to keep them on for a week!) and some precursory medication given. Beta blockers, blood thinners, stuff to reduce stomach acid. People came and went and mum made herself comfortable in the recliner in the room, wrapped in a blanket.

I met the anaesthetist and while she was very nice and smiley, she was also very brisk. I’d been worried that paracetamol does nothing for me, and that I usually take tramadol and neurofen to help my migraines (though I have only had this once in about 4 months), but this was dismissed as “different pain responds to medication differently” and she was off.

Just after 8am it was time to go, and I was wheeled in my bed through the hospital to theatre. Mum’s tears as I was rolled away were probably the hardest part at this point so I had my brave face on.

The nurse and orderly handed me over, my identity and operation being performed were double checked and I was taken into the operating theatre. It wasn’t quite Shortland Street! Very bright and there was a large white board with “Whittle” on it had a long list of writing, labels for mysterious instruments.

I moved to the operating table and positioned myself in the middle. Monitor sensors were put all over me including my forehead, and the anaesthetist inserted the IV lure and injected me with something that started making me woozy. The gas came next and I was out.

As with the last time I woke from general anaesthetic I don’t remember much. I remember being wheeled back into my room and “them” saying to mum “here she is”, and then I drifted in and out of sleep. It was after midday so I’d been away for about 4 hours.

I was up out of the bed by about 2pm, sipping 30mL of water every hour. Pain was definitely present but the nurses had that under control pretty swiftly. I moved to the recliner chair and around 6pm my dad and sister came to visit. 

I have five “entry points”, about an inch long each tightly sutured, they should all heal well. One aches more than the others.

The night after the op was ok, every few hours I would wake up, page the nurse and have my wires unhooked so I could bathroom and do a few laps of the hallways. They get you “mobilising” early and often, as during surgery your body is inflated with gas and that gas needs to come out, so walking about helps get it moving. I had maybe 4-5 hours sleep and the hospital kicked back into day mode from about 6am. 

I started my 60mL of water per hour and had to down my regular medication crushed in water – it was like taking shots from a toilet bowl and I have to do that every day for the next month. Worst.

Mum arrived again around 11am hoping to take me home, I showered and had my wound dressings changed. We had to wait for a particular bodily function before I could progress, and I was pacing around my room like a pregnant woman willing the baby to move along. 

I was home by about 4pm the day after surgery, responsible for sticking to the fluids and monitoring the pain relief schedule.

The night was pretty bad, I got nauseous and diarrhoea had me up in the night, some dry retching. I phoned the nurse day 2 post op (yesterday) and she said it was all fine, all normal, just residual effects of the general anaesthetic.

During day 2 I managed to get all my fluid in, an optifast shake, some berrocca, water, and I had about a cupful of extra protein milk too and it all went well. I managed a small walk, a visit from a dear friend and to pat Local Cat. My insides seem to have stopped warring and making awful noises for now, and I almost managed to sleep the whole night last night!

I forgot what day it was when I woke this morning, but my phone was particularly busy with birthday messages so I was soon reminded. I’m up and about, feeling pretty good just not as nimble as usual.

I have a lot of fluids to drink! I’ll be on this liquid diet until two weeks post op, then puree and soft foods before slowly reintroducing (very well chewed) solid foods. I haven’t had any discomfort from taking in liquid to my new tummy yet so let’s hope the good-ness continues to last!

Yes, my head has been a bit sore too – the past two days but nothing really beyond the usual.

Will I do anything special for my birthday? Nope, but I plan to celebrate in 6 months time when I’ll be healed and hopefully doing much better!

Let’s do this thing.

I’m writing a few posts about my health issues. I explain this all over and over again to friends and acquaintances, and with some big recent developments I want to start sharing the info online.

Primarily, it’s to inform people I’m lucky enough to have care about me, I’m not trying to reach a wider audience but obviously this stuff ain’t a secret. If you haven’t read it yet, please start with part 1: The problem with my head. There’s also a second piece: Fix my tummy, fix my head.

If you wish to talk to me about what I write, please do so via twitter: @antheaw, or on Facebook if we’re friends there.

On the 5th of November my mother drove to Auckland to come along to a seminar with me about “weight loss surgery”.

I use the quote marks as I find the term somewhat misleading, the surgery doesn’t guarantee weight loss, and it’s not like other surgeries where you have an operation, recover and are largely done, fixed.

Nope, it’s part of a whole big life-changing piece of work. That work includes the inescapable focus on diet and exercise that go hand in hand toward healthy weight loss.

So why have the surgery if it’s not a fix? Because it helps. It helps by restricting the capacity of the stomach to tolerate food, and the particular surgery I am having for some people seems to “switch off” their hunger and desire for food, making it easier to make healthier choices in nourishing themselves. I’m not a doctor, I’m not going to explain it, that part has been done before. I just want it to be clear that:

This operation will not make me thin.

Changing my life around diet and exercise will. Dealing with some (still very scary) issues I have mentally, will.

I know, right? Raw deal. I really wished it was so simple as having an operation and having the issue magically solved, and being fine and well and brilliant and being able to fit into “normal” sized clothes. 

I knew all this before going along to a stuffy clinic on a Wednesday evening, for that first face to face experience of the clinic after basically memorising (and professionally criticising!) the practice’s website.

What was probably supposed to be a somewhat welcoming and encouraging presentation made my eyes roll at cliché “tips” about incidental exercise and how many calories lurk in the humble gingernut.

Fortunately, two things were fact: I’d already talked myself into the idea. And secondly, the presentation ended with a short talk from a post-op patient who shared some of his experiences and the reality of the process, and how quickly through hard work his life had completely changed.

Thank the stars for some reality, honesty and genuine passion.

Further honesty was found in the handout book we received, the price. For the roux en y gastric bypass with silastic ring as performed by this practice, we were looking at $20,300 plus pre-op consultations. It’s a big number but if there’s anything you spend a big number on it’s your health, I just choose to write it here as I get asked often “how much”.

Three weeks later, on the 26th of November I had my first consultation with the surgeon, the key outtake of which was “how’s January 12th?”. I think I managed to blink in response.

This was my first appointment, and surely there were more hoops to leap through than this? “I see no reason to wait” said the qualified professional in the room. “Well I guess you’re giving me a new tummy for my birthday then” I said (my birthday is on the 15th, it’s going to be awful).

Suddenly this idea was a real thing that was happening to me, in six weeks. Six WEEKS! The YouTube Americans had all gone on about months of preamble, and here I had six weeks.

In terms of other pre-op preparation, I met with the practice nutritionist, who was lovely and personable and understood my head pain and that it’s not so easy to exercise when doing so feels like suicide. She also shared that they have had other patients with Idiopathic Intracranial Hypertension who have improved after surgery (yay!!!).

I was put on a strict diet right away, based on the Optifast very low calorie diet – meal replacement shakes, soups or bars and two serves of certain veges per day. Basically nothing else, no fruit, no carbs, no additional protein. I started on the 12th of December (one month before surgery), and I lost 4kg (8.82lbs) in the first week. The first days were hell.

I also met with the psychologist who was basically checking I was sound of mind to proceed, and watching for how the process might affect me mentally. I think she did really well and on reflection, I think I’ll book in to see her again and start digging at some mental Stuff.

Lastly, I returned to the practice before Christmas to read and sign the consent form. That was a rather expensive ten minutes.

After tying up a little work stuff in Auckland, I scurried off home to Coromandel for my Christmas “break”. I had Optifast shakes for breakfast, lunch and dinner. I ate some normal food but wasn’t ridiculous about it. Not as ridiculous as usual. I ate hāngi on Christmas day and had dessert and enjoyed it. My sister’s visiting Irish friend ate my share of the potatoes (and then some).

Some days I had a small meal like what everyone else was having instead of my shakes. I’ve definitely not been strict on the diet but I’m down over 8kg (17.6lbs) pre surgery which for Christmas time feels reasonable.

I didn’t do very much during my time at home in Papa Aroha, I listened to a lot of podcast episodes about bariatric surgery, interviews with patients and the like. It has really helped me to prepare, the whole idea is much more normalised to me now and some of the stories are really thought provoking.

It’s quite scary to see how much I relate to many stories too, where people are behaving ridiculously and treating themselves terribly and I have a bell of familiarity ringing in my mind.

I’m back in Auckland now, and I know that I will be the first patient for my surgeon this year. I must be admitted to hospital on Monday morning at 5:30am. The surgery is currently scheduled for 8:30am and should take a few hours.

What I really wanted to say in this post is thank you! If you’ve bothered to read this much you really deserve my thanks for a start, you cared enough to keep reading or you’re watching with a horrified fascination – but no doubt you learned something.

Thank you to the friends and family who comment when I post these “little” pieces of writing to Facebook or Twitter. Thank you for sending me “I’ve been thinking of you, how are you going?” text messages. Thank you for telling me you like my writing! For messaging me telling me you think I am positive or strong or beautiful or confident or any of the other lovely things you’ve said.

Thank you for telling me you know someone who did really well after similar surgery. Thank you for offering to help or to listen because you’ve been through it yourself. Thank you for offering to fetch me stuff! Thanks for messaging from the other side of the world letting me know you’re pleased to have caught up with what’s going on. For sending me cards and best wishes and being there to respond when I have things to Say.

Please don’t stop!

See you on the other side x

Part four: Post op.

The problem with my head.

I plan to write a few posts about my health issues.

I explain this stuff over and over again to friends and acquaintances, and with some big recent developments I want to start sharing the info online.

Primarily, it’s to inform people I’m lucky enough to have care about me, I’m not trying to reach a wider audience but obviously this stuff ain’t a secret.

If you wish to talk to me about it, please do so via twitter: @antheaw, or on Facebook if we’re friends there.

Since late 2012 I have had a hurty head.

Migraines where I have to hide in my dark bedroom, often with sunglasses on in order to look at my phone or computer on their darkest setting for some entertainment. Migraines where the sound of our microwave shutting sends an explosion of pain through my cranium.

I have had up to two weeks at a time suffering from a migraine or extremely bad headache, where in the “headache” stage I can actually get up and function semi-normally while coping with the pain whereas full blown migraine just writes me off and curling up in bed is the only answer.

This is pretty disruptive to life! I have spent a lot. A LOT. of time and money with doctors, trying to find relief for my symptoms, reasons for them and treatments. The only relief I have ever found is double the usual dose of ibuprofen (the same stuff that’s in Neurofen) and Tramadol combined. One type of drug alone does not work at all, but both together bring some relief. 

I have spent a lot of money on seeing a Neurologist, whose examinations showed everything to be ok, and who prescribed different medications.

I had a great job, at the company formerly known as The Radio Network, now the Radio department of NZME. I would have many days off, many days coming late to the office as I spent bad mornings in bed waiting for painkillers to work. I would look and feel pretty rubbish but work hard to still get all my tasks completed. Some days I could work from home, with my curtains drawn and sunglasses on and phone calls conducted at their lowest volume as the sound coming from the speaker echoed pain through my head.

Fun things were given up, like concert tickets and trips away and nights out with my friends. I started hesitating to make any commitments as I had no way of predicting wether I would be well enough to fulfill them and I hated to let people down, felt like a flake and a failure when I had to send another “Hey sorry, I can’t make it, I’m not well.” text to a friend.

On the 20th of this month, it’ll be a year since I quit my job to focus on getting better. Through trying to treat the issues with my head, the depression I have struggled with for most of my life was also diagnosed and treatment for that begun. Without a diagnosis for what was causing the pain in my head however, there was still no real treatment plan.

I started working freelance, taking on a handful of hours work each month which meant only a few meetings and most of my work done from home and when I was capable of doing it. It was a massive relief to no longer feel I was expected to show face in an office every day for a set amount of time, even though my employers had been excellent about my situation.

Around August, I had a really terrible migraine which started one evening and sent me to bed early. This happens often. In the morning, when it was worse, I reached for my painkiller cocktail only to have it rejected by my body and thrown back up into the bin. This is terrifying, when the only relief you know fails for you, what can you do?

I was unable to get out of bed, but I sleep with my phone under my pillow so WAS able to call my sister, in tears, and eventually get out that I needed her to come and help to take me to the doctor. She made an appointment with my GP, dressed me and it took a very very long time to get out to the car and down to the doctor’s office.

Laying in the dark nurses office I was prepared for some sort of injectable relief, I don’t even know what it was, but my sister’s rubbing of my arm became more insistent as the nurse revealed the administering needle. “This patting is for me, not for you, that needle is fucking huge!” she told me. I didn’t care, I just hoped it would help. In fact, the way they grilled me about wether I had an addictive nature, and warned me that I may be a bit “funny” after the injection, I hoped it would give me some kind of high. It didn’t, it helped the pain enough that I was able to walk out to the car by myself and to spend the rest of the day in bed without feeling as though my head was being torn apart from the inside. Go figure.

After this episode and feeling so terrified, I pushed my GP to get an MRI scan, which my Neurologist ordered. Those things are also not cheap. My appointment was made fairly quickly and I lay in the noisy box keeping very still for what seemed like an age. I was pretty disappointed it was nothing like the MRI scanner I had seen in a TV show, which Walter Bishop used on Fringe.

I was sent a CD with some software on it and images readable by this software which show the scan of my brain. I had to dig out an old Windows computer to be able to look at it, but had no idea what I was seeing. My brain, sure, but was there anything wrong with it?

My neurologist explained that I didn’t have anything seriously and immediately wrong shown in the images but that the pressure in my head seemed elevated, and the next step was a lumbar puncture. Also known as a spinal tap, it’s a needle inserted into the spinal cord to test the pressure of fluid there and to extract fluid for testing. It’s a bit like having an epidural but they take liquid out not put it in. And I didn’t come out with a baby afterward. 

That procedure showed the pressure in my fluid was indeed elevated, though the fluid itself is normal and healthy. And so I was given the weirdest diagnosis that went something along the lines of “there is a condition that is diagnosed in the absence of any other explanation for your symptoms, when an MRI and a Lumbar Puncture indicate that spinal fluid pressure is high”. The condition is called idiopathic intracranial hypertension, and I was told it’s like having a brain tumour without actually having a brain tumour. In years past it was assumed to be a tumour until science advanced. 

The raised pressure also raises pressure in certain vessels and veins in the brain and head, including sheaths around the optic nerves which could effectively choke them. There is a risk to losing eyesight from the condition, and I really quite value my eyesight! Scary times.

So I had a label! It’s a somewhat rare label, and my neurologist explained that while the cause is unknown, the condition seems to affect mostly women in my age bracket and mostly women who are overweight, though not exclusively women, not all women who are overweight.

After two years of searching for what might be wrong with me, I did not mind being told this at all. It was a lot different to the experience I hear of often, where an overweight person visits a doctor and immediately is told to lose weight – even when the reason for visiting is unrelated or the patient shows no signs of ill health caused by their weight. 

So while losing weight isn’t guaranteed to fix the condition with my head, it wouldn’t hurt (and as I see it, would benefit in other ways too). My neurologist also surprised me by acknowledging that losing weight is the hardest thing to do and to maintain.

About that comes next.

(Part 2: Fix my tummy, fix my head)