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

Friday 15 February 2013

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Apologies for not posting on Wednesday evening as promised but I just couldn't bring myself to do it. It is with a heavy heart that I write this post already and if I had written it on Wednesday it would have been filled with anger and despair. That is not to say that this post will be full of joy and optimism but at least after a couple of days I've been able to digest the bad news and vent my emotions out.

Tuesday 12 February 2013

3 is NOT my magic number

I wish this was a good news post but unfortunately it appears the 3rd time wasn't that lucky after all. That isn't to say that all is lost but so far it's not looking very encouraging. Cortisol level day after surgery number 3 was 133 which had us very hopeful but unfortunately, after that the following days were all in the 300s. On Friday, the day I was discharged, it was 330 which was a little lower than the day before but still not low enough to consider me cured.

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...