It's been such a long time since I last posted and I sincerely apologies! Many of you have gotten in touch with me via email, facebook and phone to ask about how I'm doing and I appreciate the concern. It's now been 6 weeks since my surgery and I'm pleased to say that apart from my terrible backaches, I'm doing really well!
I'm sure some of you are curious as to what I have been up to so here's the first of a couple of posts covering the last 6 weeks.
Part 1: The Surgery
I was admitted to the National Hospital for Neurology and Neurosurgery on Sunday the 19th as my surgery was scheduled for Monday morning. I arrived at about 5pm, changed into my pyjamas and got into the bed which would be my home for the next 5 days. The ward I was in had 4 bays, each with 6 beds per bay. My bed was just opposite the nurse's station which was good in case of emergencies, but also meant that there wasn't much privacy or calm unless I closed the curtains surrounding my bed and put in my earplugs.
The first evening mum stayed till about 8pm and after that several people came to see me to discuss the surgery, get my consent, etc.
I was the first one scheduled on Monday morning so I was woken up at 6am so that I could shower, put on the special tights and gown, and answer last minute questions and sign a few papers.
By 8.15 am I was walking down to the operating theatre feeling very nervous but knowing that when I would wake up again, it would be the beginning of my new life, free from Cushing's.
In the pre-op room, the anesthesiologists were really nice and tried to put me at ease. The last thing I remember is telling them about my adorable nephew before passing out completely.
I woke up what seemed like barely a few minutes later but it took me a long time to be able to focus my mind and open my eyes. I could hear the recovery nurses talking to me and asking me how I was feeling but I was just in and out of consciousness. And then, as had happened to me before when I had been under anesthetic, I started bursting into tears crying. The nurses panicked and asked me what was wrong and I tried to explain to them that I was actually OK and couldn't explain why I was crying! I asked the nurse to hold my hand so that I could squeeze hers and focus because crying was actually very painful. So I tried to breath slowly and calm myself down.
Because I kept slipping in and out of consciousness I can't remember how and when I got wheeled back up to the ward but I opened my eyes to mum next to me at around 12.15 I think.
Here is a photo of me a couple of hours after the surgery:
The first day I was just so tired that I slept most of the time but I was in quite a lot of pain. But the pain was strange, it was like the pain I experienced when I had my wisdom teeth removed. It was horrible, there's nothing worse than tooth ache, and I couldn't understand why my jaw hurt when the surgery was to my brain, going through my nose. The pain got worse every 4 or so hours and at first I thought it was because that was when my next morphine dose was due. But at one point during the night, it started fading and then as I swallowed my morphine dose, it came back strong again! So I mentioned it to the night nurse and asked if there was any way I could try a different pain killer. After having OK ed it with my neurosurgeon, they switched me to a painkiller which is like a really strong ibuprofen and it worked a treat! It appears I may not be completely allergic to morphine as I didn't vomit or anything like that, but it definitely doesn't agree with me as it made my pain worse. (Mum joked that this was probably a good thing as it meant I would never become morphine dependant!)
There's actually quite a serious story behind my switch of painkillers which most people would probably find quite appalling! When I asked to switch, it was a junior or trainee doctor on my neurosurgeon's team who wrote down the prescription on my file, it was 7.30am and very dark on the ward. He wrote the new order down and then stepped away to finish rounds with my surgeon. Since the file was just sitting there on my table, I decided to take a peek at it out of curiosity. Now medical files are quite difficult to understand if you have no knowledge of abbreviations and medical terminology but I could see that the medication written under "Current prescriptions" weren't the medicines I was taking. So I looked to the front of the file and saw that this wasn't actually MY file!!!!
The incompetent idiot had written down the new prescription on another patients file. Even to this day I believe that it was a miracle/my good luck that I was curious and decided to look at the file because if I hadn't and hadn't informed staff members of the error, not only might I not have been administered my medication, but this 15year old girl who's file they had written on could have received strong medication that wasn't for her! I hate to imagine what could have happened....
Another incident which demonstrates the further incompetence I encountered: I was suppose to have my blood drawn every morning at 9am to measure my cortisol levels. The timing is extremely important because levels naturally rise and fall during the day but they should be at their lowest when you wake up. One day, the phlebotomist (the lab tech who takes blood samples, or The Vampire as I came to call him) left the ward without taking my blood. I call a nurse over and ask if he was going to come back because it was now 9.20 and I needed my sample to be taken. So the nurses phone to find out what happened and it turns out that he refused to do it because my doctor hadn't written up the request form clearly. Some information was missing but instead of signalling this to the nurses so that it could be rectified and he could take my blood he just left! So finally a nurse took it at around 10am and let me tell you folks, nurses aren't as experienced at drawing blood and when you're sensitive and bruise easily like me it's no fun!!! So there was a big who ha when he came back in the afternoon because the nurse I had spoken to decided to lodge a complaint against him because this wasn't the first time he'd done this apparently. The Vampire explained his point of view to me and so did the nurse and they were both right and really it was the fault of the doctor and the system but at the end of the day, I didn't care anymore!! They were all angry about bureaucratic crap that made the system fail but all I could see was that in the end it was the patients that suffered and this really is a serious matter. In fact it has only made my ambition to work in the field of Health Psychology that much stronger but that's for another post...
So anyway, I spent most days just sleeping or chatting with my mum who would arrive every morning with a croissant and stay all day long till about 8-9pm when visiting hours were over. I had a couple of friends drop by but in all honesty I didn't feel like seeing many people as I was still very weak and tired. Even going to the toilet was a mission and it wasn't much fun too as I had to collect my urine every time since they were measuring my fluid output. The whole time I was in hospital I also had to write down everything I was drinking because they were basically measuring my input/output to make sure that I hadn't developed a form of diabetes which is sometimes a complication after serious surgery.
Every morning, my surgeon would come to my bedside during rounds and ask me how I was feeling. On Thursday when I told him I was feeling completely exhausted and drained, he said: "PERFECT! I can send you home now". Turns out that feeling drained was a sign that my cortisol levels had come down and that I was on the road to recovery. So the doc told me that if my levels were good that afternoon, I would be discharged with some replacement steroids and painkillers, and have to return for follow up appointments 2 and 6 weeks post-op. Cortisol levels after surgery: Day 1: 600, Day 2: 110 and Day 3: 59. Apparently levels under 50 are considered a cure so I was pretty much there! In fact, the couple of times I saw my surgeon after the surgery, he kept boasting that he'd cured me so if he's confident about it, so am I!
On Thursday evening I was discharged and returned home to begin what was actually going to be the hardest part for me. Some people don't really understand what I mean when I say this but basically it's because the surgery itself was easy for me. Apart from fearing the risk of dying or it going wrong, it was a fairly easy procedure because they didn't even have to open me up! I only had a small stitch on my nostril because it was so small and narrow that he had to widen it a little for the procedure. Yes I was in pain after but once I was on the right painkillers I could handle it. And seeing as my surgeon was one of the best in the UK, I was in great hands.
No, the hardest part for me is now: The recovery. Not only do I have to recover from serious surgery, but I have to get used to the sudden change in my hormone levels. You might think that since they have returned to normal I should be feeling good now, but the truth is that when your body has been exposed to high doses of cortisol as mine has for years, it takes a long time for you to adjust. It can take anything from months to even years to get back to "normal".
In Part 2 I'll tell you more about a couple of events that happened after having been discharged and what I've been up to since I've been at home....
Part 2! Part 2!
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