My bilateral adrenalectomy was now 3 weeks ago. As far as I’m aware, I’m now in full remission and the surgery was a success. I wish I could say that the experience has been simple and straightforward, but my life always has to involve a little bit of drama!
Despite my brain fog lifting, my mind still isn’t 100% ‘with it’ so apologies in advance if this post seems to ramble on and on about nothing. I just wanted to share my story and experience whilst it’s still fresh in the hope that it may help others in the same situation.
I’ll start at the beginning. I arrived at Northern General Hospital at 6.30am on 30th January and went to the theatre admissions unit. As soon as we arrived, I had a feeling that something wasn’t going to go as planned.. The poor receptionist then had the job to tell everyone in the waiting area that there weren’t enough beds and that only a select number of people were going to be called through at that moment in time as they were definitely having their surgery. The rest, well, they had to simply wait and see. There was a basket with a sign on saying “waiting for a bed” and I could see my file in there, you couldn’t miss it, it was the thickest one there! The number of people in the waiting room began to dwindle, some were sent home as they definitely didn’t have a bed and their surgery was to be rearranged. I had never felt so anxious in my entire life. You’d have thought that someone in my situation, with dangerously high cortisol levels that can cause panic attacks, would have been on the list. I was told by the surgeon that I was first on the list due to the complex nature of the surgery.. but it’s never that simple! That’s when it came. I felt a wave, from my feet into my stomach and chest. I had to get out of that room because I couldn’t breathe. Thankfully, Daniel and my Mum were with me so they calmed me down and asked what was going on. No one really had a clue.
Five hours later, at 11.30am, a confused looking anaesthetist came into the room saying that they were waiting for me in theatre! I hadn’t even got a gown or stockings at this point so it was a mad rush to get changed and walk down to theatre. The short walk felt like it took a lifetime. Daniel and my Mum walked with me and as I turned to say goodbye, I felt their heartache. The next stages were a complete blur, the rest of the day was, to be honest. Laying down on the bed, cannulas inserted, weird moon boots on, 5 faces looking down at me and black. I was out.
The rest of the day was the worst experience of my life. It shouldn’t have happened and I want to campaign and speak out so that it doesn’t happen again. I remember very little so I will try and fill in the blanks from the information I gathered from Daniel, my Mum and some of the nurses. I remember coming round and seeing a clock, I’d been in surgery 6.5 hours. I was trying my hardest to wake up and look around but I couldn’t. I kept slipping in and out of consciousness. The next thing I remember is being on a ward and seeing Daniel next to me. I kept trying to talk but the words wouldn’t form in my mouth. I was so thirsty. So dizzy. The rest of that day, I can’t remember at all. I had an adrenal crisis. My surgeon hadn’t given me any hydrocortisone following the removal of my adrenal glands. I had been given some at 11.30am and wasn’t due anymore until 10pm. I now need regular doses of hydrocortisone to survive as this is what the adrenal glands produce (among other things) and you can’t live without it! It was like a scene from Casualty or something. I had passed out, Daniel was shouting for the nurses to come and help, they were measuring my vitals but still they didn’t have the go ahead to give me any hydrocortisone. They rang the surgeon TWICE and he still refused. Thankfully, a nurse saw that my stats were dropping and if I didn’t receive it there and then, plain and simple, I’d have died. My blood pressure, heart rate and oxygen levels had all dropped dangerously low. I am so thankful that my Mum and Daniel arrived when they did, I’m not sure I’d be here right now if they’d have come any later! To add to the drama, I had to be on oxygen for two days and I was catheterised on the first night as my bladder had stopped working.
The ward I was on was for upper GI issues, so the nurses and health care assistants didn’t have a clue about adrenal insufficiency and the importance of giving me hydrocortisone at specific times. They were all absolutely lovely and I can’t fault their professionalism, it’s just frustrating when no one really knows what to do with me and I honestly can say, I felt safer when Daniel was with me, than I did when I was alone, because he knows the signs and exactly what to look out for. There was a point when I knew I needed a dose of HC, the nurses couldn’t give me it as my surgeon wouldn’t allow it, so Daniel had to go to the car and bring me some of my own. Obviously, there’s a lot of strain on the NHS and I’m not going to go into politics because I could rant for hours.. I do think that there should be more attention and time focussing on rare diseases and how to deal with and treat them. I only saw the surgeon once whilst I was in hospital and it’s safe to say that we agreed to disagree! He was of the opinion that I should be leaving hospital on a very low dose of hydrocortisone, which I refused as I would rather be on too much than too little at this critical time to avoid another crisis. The whole experience was such a mess! It took 12 hours to discharge me and with the surgeon refusing to see me again, it was tough to communicate as my endocrine care was at a different hospital and my endocrinologist was away.
Since I’ve been home, I’ve developed post operative neuropathic pain, basically nerve damage in my abdomen which can happen when patients endure a lengthy surgery. I can honestly say that it is the worst pain that I have ever ever had and I do have a high pain threshold! I’ve tried a variety of different tablets and different strengths or morphine but nothing works. I am just going to have to ride it out until it eases and goes, if it ever does. The surgery itself has been physically really tough, if I’m honest, it’s been worse than neurosurgery, but I’ve done it! I can now look forward to my recovery.
Adjusting to a life completely dependent on hydrocortisone has been a daunting prospect since I found out I was having a BLA, tapering to a manageable dose is one of the most difficult things I have ever had to do but I’m almost at my maintenance dose, I just need to have some tests in a few weeks to make sure my body is stable enough to get to it! Most of all, this has been the most mentally challenging experience of my entire life. Just under a week post op, I thought I was going to have a nervous breakdown because I felt that I had zero control and my emotions were all over the place. BUT, despite how hard it’s been, how hard it currently is and how hard it’s going to be, I feel the most positive and happiest I have felt in 8 years. My brain fog is non existent, I feel clearer and most of all, I know my Cushing’s has gone forever. I am so excited about the future, I can finally look forward, no more looking back! I feel truly blessed that I have another chance at life.
One thing I would like to address before I end my ramblings for the day.. Trolls, cyber bullies, whatever you want to call them. I write this blog, I share my story, I campaign to bring rare diseases into the light, I advocate body positivity and self love because I want to raise awareness, I want to change the way people feel about themselves, I want to spread happiness, I want to learn from others, grow as a person and make room for every single person suffering from being their own worst enemy. I don’t think I’m a doctor, I’ve said many times in previous posts that I can’t give you medical advice and I’m not trying to gain sympathy or attention. I want to shine a light onto Cushing’s Disease and I want to bring it to people’s attention. If you are going to send me hate mail or try to body shame me, it doesn’t upset me. I’m proud that I’ve fought a killer disease twice. I still have a long way to go, but I’m so far from where I used to be and I’m damn proud of that.
Until next time, keep fighting, don’t allow yourself or others to label you. You are beautiful.