Welcome to my blog! You can start by getting to know a bit more About me or for a more detailed explanation of how I was diagnosed, have a read of my posts The Journey to Cushing's Syndrome and Part II the saga continues. Bienvenue sur mon blog! Vous pouvez commencez par decouvrir Mon Histoire avec Cushing's

Sunday 3 February 2013

3rd time lucky?

Well it looks like luck is not really on my side! I had my 2nd surgery on Friday the 25th of January. It went well, no obvious complications though I did have a diabetes insipidus scare for a couple of days, but it failed to cure me. 
My cortisol post-op was as follows:
  • Day 1: 800ish
  • Day 2: 400ish
  • Day 3: 189
  • Day 4: 136
  • Day 5: 200
  • Day 6: 400

What a disappointment!! After Tuesday's level of 136, I really thought it was going to crash and I'd be able to go home so when I found out on Wednesday that it was going up it felt like a shot to the heart. The nurse came to tell me and said the neurosurgeon would come speak to me herself about what we should do next.
The day before I had been told that there was a chance I might need a 3rd operation but the nurse said she didn't think that would be the case for me! Boy was she wrong but in a way, I'm grateful she alleviated my fears as it allowed me to sleep that little bit more soundly that night.

Anyway, back to Wednesday evening. At about 8.20pm my surgeon finally arrives to my room, has a seat and informs me that she does firmly believe that a 3rd operation is necessary and that this time they might even need to remove up to half of my pituitary. Now I am an information hoarder and I like to read up a lot on my disease and treatments etc, so I know that removing half of the pituitary can have serious ramifications on my hormone functions (as I mentioned in my previous post). But I have to say, after speaking to my surgeon for about 20-30 minutes, I was convinced. Both she and my endo truly believe this is my best chance at a cure and I trust their judgement. They are both some of the most experienced and well respected medical professionals in their respective fields in the UK and I couldn't be in better hands.
Sure, I'm worried about what pituitary function I will have left but if I'm rid of Cushing's it will be the start of a new and better life for me. All the other hormones can also be replaced and strange as it sounds, I will have a longer, healthier life even if I'm on 5 pills a day. Because at the end of the day, Cushing's kills!

So this evening I'm heading back to the hospital. I've been at home the last couple of days as I asked for a "weekend leave" so that all this could sink in and I could digest everything that was happening. I wanted to spend some time with my dog and chat to several of my friends and family on the phone and using Skype. I will be having my 3rd surgery tomorrow morning, Monday the 4th of February. Let's pray that, like my driving license, it's 3rd time lucky for me and I'll finally be rid of this stupid disease... 

2 comments:

  1. wow girl! Your story is horrible and amazing at the same time. you've been fighting for such a long time! I really hope this surgery will be the last one for you so you can live your life without this plaguing you.
    I discovered your blog because I watched your forget you video. I love it!! I feel the same way. I'm pretty sure I have cushings. I only just heard about it this last week but I have all the symptoms and have been struggling for three years with some mysterious illness. Drs don't know what to do besides tell be to go exercise. :/ I live in Oregon, but I'm pretty sure I'm going to go to Dr Theodore Friedman in la.
    thank you SO much for your story. I'm so glad I found your blog. I love your attitude and I'll be waiting for more posts! :)

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    1. Hi Heather! Thanks for watching my videos and reading my blog. It's great to meet others even if it is under such sad circumstances. Unfortunately it appears I haven't been cured (details in my most recent post) but I'm staying hopeful. I hope that you are able to find some answers too. I know the waiting and doubt is the worse. Although obviously the frustration of not being cured also takes its toll...

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