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The Past few Days (or, My NHS Hospital Experience)

[x-posted to blog, lj, and facebook. Sorry if you see this more than once, and apologies for the length. I can use the “more” option on the blog directly, but I don’t think it will cut any length for those of you reading it on an RSS reader.]

For some background –

I have Hidradenitis Suppurativa and was diagnosed in July 2010 after a year of misdiagnoses (2 in the US, 2 in the UK). Basically, what it means is that I have (very persistent!) infections in my armpit sweat glands. The disease hits females more than males (Though apparently men tend to get them more in their groin, women more in the armpits) and there really is no known cause or cure. There are loads of things that “might” trigger it, and loads of things that “might” cure it. Basically, I’m stuck with it until they decide to go away. Treatment (for me) has included loads of different antibiotic medications, a topical steroidal cream (at one point), and most recently, scrubbing with Hibiscrub and then applying Zineryt, a bacterial acne medication.

I have a file 4 pages long that describes my entire history with this problem, including all treatments. I won’t post it, but if you really are that curious, ask me to email it to you.

The Zineryt was doing it’s job, and while my armpit is scarred, the infections themselves were clearing up. And then I got a really bad case of flu that knocked me down for two weeks. At one point, I couldn’t get out of bed and skipped showering for three days. I was drenched in sweat several times each day…and a HS spot developed in my right armpit. (previously, everything was in left). I kept putting Zineryt on it, but on Wednesday or so of last week, I noticed a new spot developing – this one was about 2 inches long, and very narrow, but it hurt a lot. I called to make a regular appointment with my GP, but he was all booked up so I got an appointment to see one of the other GPs in the surgery. Told it was a HS flare up, and given a week of antibiotics with the instructions to come back in a week if it wasn’t healed or got worse.

Sunday evening, Tim put a cup of tea down for me and when I reached for it I had stabbing pain in my armpit, so bad I was sobbing from the pain. We rang up After Hours, and after a call back from a nurse, was told to report straight to A&E (US: ER). We arrived at A&E around 10PM.

By about 12AM, it was determined that I needed to have the wound drained, but they could not do it via a needle, it needed to be done by a surgeon. Waited until 3AM for a bed, and was told to come back in the “morning” for 8AM at the EAU (Emergency Assessment Unit) where they would have a bed for me. Was told “nil by mouth” as the plan was to do surgery in the AM.

Went home, got about 2 hours of sleep.

Reported to the AEU for 8. Saw a specialist around 11AM who said she wanted an ultrasound before ordering any surgery and I was brought food by the nurse (Yay!). But I sat in the waiting room for another hour and a half before they moved me to a bed in the AEU.

An hour later, they moved me again, this time to the Gynaecological unit. Er, let me just say how FRIGHTENING it is to be wheeled through Maternity and then into the Gynaecological unit when as far as you knew, everything was fine in that department and you knew you weren’t pregnant. Uhm…yeah. Turns out they were putting me there because it was an all-female ward, there was a bed free, and they thought I would rather be with “women my own age” over the older people in the EAU unit. I was put in an empty room with 4 beds. An hour after that, Tim went to ask a nurse if I could have some painkillers and eat again, and the nurse didn’t know I had been brought up!

Finally was told around 10PM that I was going to be spending the night, and a not-so-nice nurse kicked Tim out since “visiting hours were over” (though I understand that a) they let spouses stay longer and b) they let people stay if you’re waiting for surgery). Tears were shed, and I stayed awake until midnight to hear if I was having surgery or not. Was finally brought “dinner” around 1130PM when it was determined I wasn’t having surgery on Monday. Dinner consisted of a very skimpy cheese & pickle sarnie, a small scone (which resembled and tasted like a US biscuit), orange juice, and a pack of biscuits. But don’t get me started on the constant starving of me and the lack of receiving hot meals once I was given permission to eat.

Tuesday was a long day. BUT, I saw the surgeon three times. At one point I was told I was 4th on the list for surgery “barring an emergency”. Around 7PM, we saw 2 ambulances arrive at A&E, and I knew my chances were shot. Sure enough, a nurse came by and told me that they had to bump me again. OTOH, I got to eat a lot earlier after being starved since my “meal” at midnight. I did complain around 11AM that I was feeling dehydrated, so I was given IV fluids – 1L of regular saline, 1L of what I call “pickling juice”, as it contained the ingredients in brine, and then finally 1L of “food”. My only solid meal for the day consisted of another skimpy sandwich (this time egg mayonnaise (US: egg salad) as given to me by nighttime staff. The lady across from me gave me her spare banana, and Tim had brought me a sarnie, crisps (US: chips), and a chocolate bar. I ate the lot!

And then it was Wednesday. I was told the night before I could have water until 2AM, so assumed I’d be going first thing in the morning. Nope, never came. I was put back on 1L of saline. Suddenly, around 10, the porter came for me and said “you aren’t’ ready!” The woman in the bed opposite me (Sue, we became chatty with each other over the course of the few days) assisted me with getting into my gown so I wouldn’t have to wait for a nurse and I was wheeled away!

There was some confusion over what anaesthetic to give me because of my history of GERD. They finally made a decision and I went under. Poor Tim was on his way to the hospital for the day, so the nurse (Vicky, I loved her!) had Tim sit in the waiting room. I understand he was climbing the walls and pacing the whole time.

Surgery itself only took 10 minutes. I woke up in recover with only one sock on (how the heck did I lose a sock while completely knocked out?) and in serious, sharp, pain. At this point, it was a sting. The nurse thought it might be due to the cleansers they had used on my skin, or possibly the stuff they put inside the wound. I stayed in recovery for about an hour, where they gave me anti-nausea medication (just in case) and paracetamol (US: Tylenol) for the pain. Paracetamol didn’t help!

I was finally brought back up to the ward and Tim got to see that I was okay, but in pain. Vicky had me wait about 45 minutes before letting me have some water, and then another half hour later she let me have some food. Tim brought me a sausage roll (at my request), a proper sandwich, crisps, and a soda. The nurse brought me tea, toast, and biscuits. I was full up!

The nurse was finally given my prescription sheet….and they wanted me on morphine! Morphine would have required an additional day in hospital, and they were prescribing a HUGE dose, so she went back to them and told them no. Instead I was given Dihydrocodeine. Pain didn’t go away, but it was lessened, and I was released for home!

Since getting home I’ve slept sporadically – a quick cuddle with Tim on the sofa led to a half hour nap. Tim brought me some hot food (finally!) and we started watching Family Guy DVDs because I was still kind of dopey from the surgery and didn’t want anything I had to concentrate on. I fell fast asleep on Tim through an entire DVD of episodes (so, about 2 and a half hours) and we went upstairs.

I woke up around 330, and I’ve been composing this since as I came downstairs to take more medicine and decided to stay down until it kicked in again.

I know I have more to say, but this has taken up three pages in Open Office, so I’ll end this post now and get back to bed!

Once again, Thank you to EVERYONE who sent me well wishes via the various communication routes. I really appreciate it. I’m still not 100% and won’t be online a whole lot….even with the pain subsiding, I don’t want to go overboard and potentially slow the healing process by spending too much time typing, but maybe by Monday I will be back to a normal online appearance.

[LJ readers reading this on the LJ RSS feed: Please click on the link at the top of the entry to go directly to my blog to leave a comment, as comments left on the LJ RSS do not get seen by me. Facebook users can comment directly on Facebook.]

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The contents of this post, including images are © Rebecca J Lockley and Tim Lockley unless otherwise stated and should not be reproduced without permission. If you are not reading this on http://blog.beccajanestclair.com, my facebook page, or the RSS feed(s), please notify me.

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2 Comments so far

  1. stephanie April 1st, 2011 22:46

    feel better soon!

  2. Rebecca April 1st, 2011 22:53

    Thanks! It looks like it will be a three week recovery, but hopefully my body will heal fast 🙂

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