Smile Through It II: The Next Chapter

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CMV, 3 small letters = 1 big infection

Posted by Oli on Friday 9th May, 2008

After being admitted on Wednesday afternoon the docs have done a lot of tests as they had few ideas as to what was making Oli iffy.  Thursday night the results came in (I wish my area of the NHS had such a prompt service) and he has CMV or Cytomegalovirus infection.

This is part of a herpes virus, like cold sores, which for many of us can lay dormant and not produce any symptoms or problems.  Oli, however, has very little immune system.  Coupled with this it is actually a case when the ‘potential’ virus came with the lungs (you can read the technical bit here,,  if you so wish).

In cases where a donor is CMV+ and the recipient is CMV- doctors place the recipient on a large dose of antibiotics for 100 days and that generally prevents CMV ever being a problem.  As per usual, for Oli, this 100 days of big antibiotic hasn’t been enough to suppress the virus and it has reared it’s head to let us know.  Oli presented with almost all the symptoms (tiredness, high temperature, loss of appetite, nausea and vomiting, night sweats, muscle aches,joint pain and stiffness, and weakness).  If CMV goes untreated or mistreated it can have pretty severe consequences.

Fortunately for Oli the team at Harefield are unbelievably amazing and are onto it and seem to be nipping it in the bud already, once again for technical people out there – yesterday Oli had a CRP of 160 and today it has dropped to below 100, it’s going in the right direction.

Unfortunately for Oli because of the potential seriousness of the virus he is having some superhuman antibiotics which will mean he will be in hospital for somewhere in between 1-2 weeks.  We are supposed to be going on our first proper holiday next Friday with lots of friends and at the moment this is in jeopardy for at least Oli and maybe me.  Wee bit gutted but at the same time we realise the importance of these drugs and know that it is in his own interests that he does whatever the docs tell him he must do.

In spite of all this Oli is actually in pretty good spirits, I think it’s fairly comforting to have a rough time span in mind.  Time spent in hospital is much better handled when there is a clear light at the end of the tunnel.

Thank you from both of us for all your wonderful messages, we both really appreciate them and has made us feel very loved so thank you hugely.

Enjoy your weekend, hope the sun shines for you x


17 Responses to “CMV, 3 small letters = 1 big infection”

  1. Emma said

    Hi Kati, so sorry to hear its CMV causing these problems. A friend of mine’s little girl had a heart transplant a couple of years ago and got sick with CMV a few months after. She had a lot of problems with it and needed quite a bit of treatment but she has now been completely clear of it for about a year and is so healthy and well! Thought it might cheer you both up to know that even though she had a really bad case of it, the doctors were still able to knock it on the head. Another friend of mine’s daughter has CF and got CMV after a liver transplant. She was in hospital and pretty poorly before it was diagnosed, but once the doctors were onto it they got her sorted out and she’s had no more problems either.

    Glad to hear Oli’s spirits are still good but its such a bummer that you and he may miss your holiday. Sending you both lots of love xxxx

  2. Alaistair said

    K & Oli I am so sorry to read this….

  3. Emily said

    ohhhhh Rats.

    I was just coming on to post about the same little girl Emma is talking about – she is doing fantastically and totally CMV free now.

    Well done for keeping your chin up chuck, and as I said yesterday you win this round, so time to let the CMV thing go now eh…? 😉 xx

  4. Suze said

    Let’s hope it’s only 1 week and not 2… fingers crossed so you don’t spend your birthday in hospital.xxxxxxxxx

  5. Jac said

    So sorry to hear of this wee setback – hoping that it will clear up asap and you don’t miss out on your holiday. Thinking of you and sending healing hugs
    jac xx

  6. viks said

    Hi Oli, sorry to hear the CMV has been getting the upper hand, glad your CRP is moving in the right direction, Am thinking of you

    Take care, Viks

  7. Katie H said

    Sorry to hear about this setback Oli, but I’m really pleased that they are on to it now, and hopefully these antibiotics will do the trick.

    And K, huge congratulations on getting your place for your speech therapy course, I’m so pleased for you.

  8. Hayley said

    Beep, Beep, Beep Beep, Beep! thats better now What is it they say “why the parents are away the kids will play” well Oli boy do you play, and your timing is great just as you are going on holiday yourselves. Hopefully though you will be up and rearing to go very very soon. You were obviously missing the plastic sheets on the beds in hospital I will see what I have got in the garage for you to use when you get home.
    Take care and get better really really soon, and K you take care soon you may have your first patient sooner than you thought if your godson keeps dropping his H’s hee hee.
    Lots and lots of hugs and kisses to you both
    Hoskins x3 xxxxxxxxxxxxxxx

  9. Bruce said

    Lots of love both your ways.


  10. Jayne said

    I justr caught up with your blog Oli.

    Sorry to read you have landed in hospital.

    I hope you feel better soon.

    Much love


  11. suzie said

    Sorry to hear about the wee setback Oli, I’m sure they’ll have it sorted pronto. Sending a big (((HUG))) keep truckin chuck.

    Well done on getting your place K.

    Loadsa love.

  12. Lizzie83 said

    Pants! Sorry to hear about the CMV. I tried to think of a clever word thingy for those letters but i forgot i’m useless at that. Chin up chuck!

  13. sarah said

    I was coming on to say about the little girl that Emma and Emily have mentioned as well 🙂

    Peter’s donor was also CMV+ and we had the 100days of the strong drugs (with a little argument from the PCT about who was going to fund this very expensive drug), which has, touch wood, kept him clear so far. The team at harefield are fantastic, so am sure they will sort him out good and proper, and get him home with you ASAP.

  14. jen said

    Awww, poo! I am so sorry to hear you picked up CMV oli, this is bad news for a Tuesday morning indeed! Glad at least they caught it in time and the hospital are sorting out 😉 Speedy well wishes from me

  15. mike and sue huddie said

    First of all we wanted to say just how sorry we are that you are having to go through some more horrible stuff Oli. We are rootin’ for you and praying that all will soon be well.
    Secondly congratulation Kati on getting your place at uni. Brilliant news.
    Love from Sue and Mike xxx

  16. Jacqui said

    Well done on getting into university!

    Oli: All the best and really hope you get to go on your hols. x

  17. Hi Oli and K

    I’ve been pretty poor at keeping up with the blogs just lately. Emmie has left a comment on ours about you, so thought I would come and see.

    I’m really sorry to hear about the CMV infection. Lucy went through the same treatment of oral anti b’s, but the levels just kept going up and up and she got pretty poorly. She ended up on IV Foscarnet which worked and she was sent home on oral anti b’s after 3 weeks. Her donor was CMV positive, Lucy CMV negative prior to tx.

    Unfortunately it came back twice more, which is uncommon. On the last infection she was kept on IV Foscarnet for 10 weeks and since 22/5/07 she has been CMV free.

    We have been dealing with high levels of EBV too. The hospital have been watching these as she also has some enlarged lymph nodes. She is having regular blood tests but nothing else at present. Her MMF has been reduced to half the dose (hospital watching like a hawk in case of rejection) and the levels (touch wood) seem to be going down although it is still present in her blood.

    The only side effect Lucy has shown since her dealings with Foscarnet is a lower magnesium level. I guess from reading about the ‘toxic’ drug on your blog that this is what they gave you too.

    Sending love and hugs to you both. Sorry to hear about the holiday, we had exactly the same whilst Lucy was dealing with CMV.


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