So nervous waiting

Hi everyone

I've been lurking here for a few days now and feel like I need to post about my current experience.

At the beginning of the month I was rushed into a&e in total agony in my abdomen, I felt like the doctors thought I was being over dramatic as they wouldn't even give me paracetamol to begin with, I got a little worse within the first hour, I couldn't even sit or lie down, I was just pacing around my room crying. Eventually my blood test results came back which showed my white cell count was extremely high, I was then given morphine and admitted to a ward. 
The pain disappeared after about 24 hours, but I was in hospital for nearly a week while they were trying to figure out what was wrong, I had multiple scans and everything would always appear fine, I spent a lot of the time on IV antibiotics as they thought it was an infection somewhere, eventually they decided to do ct scan, which was where they finally found it, I'd had a splenic infarct which basically meant my spleen didn't have enough oxygen and part of it had died off, extremely rare apparently, the doctors told me that the most common reason for this is haematological decease and that I needed to a full blood count and then I could be discharged while waiting for the results.

Now here is where I'm getting extremely anxious, my white cell count was high, on my discharge notes it says that they have ruled out that I even had an infection to start with, I've had no symptoms of anything before this, they told me the results would take a few days, I waited a whole week before I chased them up, all they could tell me was that it had to be referred to a specialist and this would take 3 weeks, I've been trying and failing to make an appointment with my gp to discuss what's going on, my surgery only received the notes for my a&e admission and nothing for afterwards so they are unaware of what is going on, I was really good at not googling what was going on, but the long wait has kind of made me do it, so I am really worried that it really looks like leukaemia. 

I know I just to need to sit and wait for the results, but it's been 3 and a half weeks now, I'm sure the holidays are to blame for the delay but it's driving me crazy.

  • Hi, the waiting is the hardest part  but unfortunately that is all you can do.  As you've been referred to a specialist your GP will have little information until you've seen that specialist.  Googling invariably leads to people assuming they have cancer, so many post thinking they have it pushing for more and more tests until they run themselves ragged worrying.  So you will have to be patient, you are now in the system and so are many others.  For three years my husband has had to deal with incurable cancer and we have learnt that you can't rush these things, we have to wait our turn, be patient and stop googling.  I hope all goes well when you find out what is happening.  Best wishes, Carol 

  • Thanks for your reply Carol, I felt like I was being so good not looking, all the doctors told me is that this doesn't happen without a serious underlying cause, really hoping I find something out this week. 

  • I'm sorry to hear that Megan, I'll follow your posts and hopefully you will have a better outcome soon.  Carol 

  • Hi

    Paracetamol in high doses is known to cause GI upset so possibly the doctors feared that would aggravate your symptoms.

    I'm by far not medically qualified to advise on your symptoms, however I do hope to relieve your anxiety. You do have an option of phoning the consultant's secretary, the consultant that was in charge of your care on the ward. They will be able to check if your results have returned at the very least. 

    If you have an immediate discharge letter, then the named consultant will be on that - so you can phone the hospital and ask to be put through to their secretary.

    Sometimes final discharge letters can take a very long time to get to your GP. I would try the secretary if your GP has no information - the results may be there! You don't know until you ask, and it is worth asking.

    Thoughts with you.

  • I did actually try the consultants secretary before, when they said the results only take a few days, and a week had passed, I left them several messages and nobody ever got back to me, I only managed to get an answer when I called the ward directly and explained how I couldn't even get anyone to talk to me and I just needed to be pointed in the right direction, practically begged this poor woman to help me and I was lucky that she took the time and at least found out that the results had been sent to a specialist so there would be more of a wait.

    I know I just need to be patient, I feel like I needed to have a little rant as I just feel so forgotten about.