I am titanium.

Starburst
Starburst Member Posts: 2,546
edited 19. Jul 2017, 05:04 in Living with Arthritis archive
"Shoot me down, but I get up. I'm bulletproof, nothing to lose. Fire away, fire away. Ricochet, you take your aim. Fire away, fire away. You shoot me down but I won't fall. I am titanium. You shoot me down but I won't fall. I am titanium."

After a long wait, I travelled 120 miles to get two custom made titanium and plastic prosthetics inserted in place of my destroyed jaw joints. Surgery was 2 weeks ago. It was 6 hours and a bit complicated but I was home less than 48 hours after being woken up from anaesthetic. Painful, swollen, numb and paralysed on left side but knew it would ease off over some time. I was doing better than expected.

2 days home and I went to GP with cough and bringing up mucus. She said "you're breathing fast due to surgical pain and it's hard to hear but sounds clear." I was on antibiotics anyway.

Less than 20 hours after this I was blue lighted to hospital. I was in respiratory failure and I had sepsis due to what they stated was a "severe pneumonia complicated by being immune suppressed" even though I'd been the off MTX and humira for a few weeks, as advised by rheum, before surgery. I was sedated and ventilated and in intensive care for a week. Still in hospital, trying to relearn how to walk and build strength.

I am titanium in that they expected me to not be able to fight the infection in the way that I did but I got really ill, really fast. How many of us think it won't happen to me? Until it does and you need a crash team to stop you dying.

Please please do me a favour and take a moment to read this; http://www.nhs.uk/Conditions/Blood-poisoning/Pages/Introduction.aspx#symptoms-adults It could save your life or the life of someone else. Please also share with your loved ones as I was so ill, that I was confused and becoming semi unconscious, not even able to lift my own arms or say my own name.

We are all strong but not infallible and only human. I'm beyond grateful and relieved to be here. Words will never convey how lucky I feel to be alive. Words will also never convey my gratitude to the NHS for their first class ongoing treatment and care.
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Comments

  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    I'ď been wondering how you were after your operation, but reading what's happened since I just don't know what to say except that I am SO glad to hear you are now finally on the mend, even if it is going to be a long process.
    We are so lucky to have the NHS that is there when needed. It must have been a frightening time for you, and I think that your recovery will be emotional as well as physical.
    For now be a model patient, and give yourself time to recover.
  • frogmorton
    frogmorton Member Posts: 27,376
    edited 30. Nov -1, 00:00
    Gosh Sophie!!!

    That sounds terrifying you poor girl I am so sorry you had such a rough time, but so glad to hear you are here telling us the tale.

    I feel for your family too they must have been so scared. :?

    Luckily I know the signs of sepsis as Lucy had neutropenic sepsis many times during her cancer treatment, but that article is a really good, clear one.

    Take care now we have missed you and want you back healthy and strong again.

    Love and ((()))

    GET WELL SOON

    Toni xxx
  • moderator
    moderator Moderator Posts: 4,088
    edited 30. Nov -1, 00:00
    Dear Sophie,
    my goodness what an incredibly overwhelming journey you have had since you went for your surgery two weeks ago. I am so glad to hear that you are now finally on the road to recovery, and I thank you very much indeed for the link to signs of sepsis from the NHS website. This is indeed a very important set of symptoms and as you rightly say it is important for our families and friends to understand the symptoms especially as we are on medication that suppresses our immune system.

    I cannot express how glad I am to see you posting on the forum again, and the moderator team send you all our best wishes and positive vibes to get better soon. Please keep us up-to-date with how you're getting on.
    Best Wishes
    Sharon
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    O.M.G Sophie!! So glad you've come out stronger! It must have been so terrifying for you and your family. I'm glad your on the road to recovery now, take care and stay strong. bubbadog (())'s
  • mig
    mig Member Posts: 7,151
    edited 30. Nov -1, 00:00
    OMG shocked gobsmacked and lots of words I'm not allowed to use! Thinking of you and sending hugs (((()))) X Mig
  • stickywicket
    stickywicket Member Posts: 26,619
    edited 30. Nov -1, 00:00
    Believe me, Sophie, we too are delighted you're still here to tell the tale. I'm shocked at the thought of how close we came to losing you.

    I'd been thinking of you and wondering how things were going but I never imagined they might be going quite so badly.

    After one TKR I was on a ward with a lady who developed sepsis and it was scary. She suddenly started wetting the bed and talking gibberish. At least it was clear that something had gone badly wrong and they sorted her out.

    I hope you can now begin to put it all behind you and get everything working again. It's the least you deserve.

    Will you be changing your username to Titania?
  • stremlett
    stremlett Member Posts: 37
    edited 30. Nov -1, 00:00
    I'm sending you gentle hugs and a nice big dollop of relaxation.
    {{{ }}}
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    How awful for you Sophie. Like Sticky I had been wondering how you were getting on but didn't expect such a nightmare.
    All the best for your recovery - it will be a slow process but with your indomitable spirit I have no doubt you will get there eventually.
  • Natalie1712
    Natalie1712 Member Posts: 63
    edited 30. Nov -1, 00:00
    That really sounds like a horrible experience for you. Sending big hugs to you and wish you a full recovery. Natalie x
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    My goodness me Sophie, what a dreadful experience, I'm so glad that you are now starting to get well. Like others I was wondering how things had gone and never imagined it was all going awry.

    Your family must be in bits! :oops: I imagine for some of the time you were out of it in terms of realising how serious things were, and how very relieved you and they must be feeling now. It's most definitely time to simply concentrate on getting well and spending time together just enjoying the blessings of being able to enjoy one day at a time.

    Sending all kinds of gentle hugs and positive thoughts.

    Deb xxx
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Thank you for your kind and heartwarming words, I read every one. You are like my second family and mean so much to me.

    In many ways, it's been harder on my family than me. I don't have much memory of my time in the specialist hospital due to the pain meds and no memory of being at home for 2 days before I was admitted locally. Obviously, when I was sedated, it was a non-issue for me. That's been hard though as so much has happened and it's upsetting to know that things were done to you when you don't know. I have bouts of confusion and memory loss but hope this will pass. My family know me well and meticulously recorded everything that happened which I will read properly at a later date.

    Fortunately, this hospital is also where I am seen for my RA. The respiratory consultants and my rheumatologist are working together on a plan for me. I hope it involves going home on Monday because I really, really miss my doggy and my own bed.

    I will catch up properly when I'm home. Xx
  • frogmorton
    frogmorton Member Posts: 27,376
    edited 30. Nov -1, 00:00
    Ah Sophie what lovely family yo have making notes for you. They know you so well.

    Reading your posts you sound to be very much on the mend now I am so pleased. Getting your head around all that has happened to you will come in time.

    My fingers are firmly crossed for you that the powers that be will be letting you go home on Monday. Your little doggie will be desperately missing you too!!!

    Take care and keep in touch when you can

    Love

    Toni xx
  • TheLordFlasheart
    TheLordFlasheart Member Posts: 302
    edited 30. Nov -1, 00:00
    I'm shocked to hear such a thing happened to you, hopefully your getting better from now on.

    I'll be reading your link, as i'm going in for an op tomorrow (not arthritis related).

    Best of luck in your recovery, and be strong.

    Alastair
  • moderator
    moderator Moderator Posts: 4,088
    edited 30. Nov -1, 00:00
    Hi Alistair,

    Just wanted to wish you good luck for tomorrow and a speedy recovery

    Yvonne x
  • dreamdaisy
    dreamdaisy Member Posts: 31,552
    edited 30. Nov -1, 00:00
    Sophie, I read your thread whilst away but was unable to reply due to geographical and weather-related nonsense.

    I sincerely hope that things are improving for you emotionally and physically. I don't know what else to say apart from I am so glad you remain with us, you're one special woman and it's a privilege to 'know' you. ((( ))) DD
  • stickywicket
    stickywicket Member Posts: 26,619
    edited 30. Nov -1, 00:00
    I just wanted you to know I am, and have been, thinking of you, Sophie. I hope things are going a bit better for you but please don't post here until you are well enough. ((( )))
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Thank you for the support and for checking in on me.

    I'm still in hospital because I've had a constant low grade fever but also spiking some high ones. They ran special infection blood tests and I got the results last night. These show it's most likely inflammation not infection causing these issues. They're keeping a close eye on me because of what I've been through but I'm hoping today they will tell me I can go home.

    I've been put on 40mg prednisolone for both my lungs and for my RA while they make a decision about my medication. My CRP was 5 times higher just 2 days ago, so it's clearly working well. Joints are improving and breathing is easier.

    My lungs are scarred but it's from infection and not lung disease, so there's no indication that my lung function will be affected, so this is the best news. However, it does look like humira played a role in this whole saga. My rheum came to see me yesterday and felt the CT chest scan indicated humira issues as well as pneumonia. I'll be having a rough few months as it's decided what will happen with my RA medication but I have to trust them.

    I have to say, they've been looking after me amazingly well. I can't thank them enough. I can't even begin to describe how appreciative I am of the NHS.
  • stickywicket
    stickywicket Member Posts: 26,619
    edited 30. Nov -1, 00:00
    Oh dear! Still it goes on. I'm sorry you're still in hospital, Sophie, but absolutely sure it's the best place for you right now. This has to be sorted, doesn't it?

    As you say, good old NHS.

    Have a few of my rare ones ((( ))). (Now you know you're really ill :wink: )
  • mig
    mig Member Posts: 7,151
    edited 30. Nov -1, 00:00
    Hugs (((())))
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Good morning. I came home late on Wednesday evening. I am feeling more like jelly than titanium.

    When my surgeon came to see me the morning after the jaw replacement, he asked me how I felt. I said that I felt like I'd been hit by a bus and he joked that I'd been hit by 2 buses - one on each side of my head. I saw my GP yesterday for follow up and he said that I'll feel like I've done a few rounds with Mike Tyson. I feel these analogies sum it all up. They're expecting me to rest at home for at least 6-8 weeks but at the moment, I'm barely making it through 6-8 minutes. I'm an emotional wreck which is definitely compounded by the prednisolone (it always affects my emotional state) and the lack of sleep.

    I feel guilty for feeling so utterly distraught at what has happened over the last 3 weeks as it should have been so much worse (they expected me to still be sedated and ventilated based on my initial presentation) and many people have it much worse. On the other hand, the speed of what has happened has made things hard for me as I haven't been able to absorb much information.

    I am immensely frustrated at needing help with everything, literally everything due to weakness and breathlessness. I was sent home with toilet raisers and shower chairs etc. I can't wash myself properly, I can't do the stairs, I can't get myself a drink and all I can do it hobble to the toilet with both crutches. I feel debilitated, even though I know this is temporary. I think it's worse because of the job I do but at least, it'll help me when I do return to work as I know exactly what it's like.

    I can be strong, I can be titanium but first, I really need some sleep!
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Hi Sophie,

    Was thinking about you today so just dropped by to send some hugs
    (((((( ))))))). I hope you're managing to get some good rest and that you're beginning to feel a little more human. Take time to mend and be very gentle with yourself.

    Every blessing

    Deb xxxxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,552
    edited 30. Nov -1, 00:00
    Hello my lovely, I am not surprised that you are feeling as you are: you have been to h*ll and back more than once and that is bound to take its toll. I'm away again, and not taking anything computery with me, so won't be in touch until I return: I will, however, be thinking of you very much. ((( ))) DD
  • stickywicket
    stickywicket Member Posts: 26,619
    edited 30. Nov -1, 00:00
    Your body may feel like jelly, Sophie, but your mind is made of much, much stronger stuff.

    You will get there but slowly. You've been through so much there can be no rushing things. Just accept that you are a lady of leisure for some time yet. Let recovery happen in its own time.

    And don't dare feel guilty :shock:

    ((( )))
  • mermaid
    mermaid Member Posts: 104
    edited 30. Nov -1, 00:00
    Hi Sophie, so sorry to come in so late to your thread. My goodness you have really been through it - and have come out the other side, well done!

    You have done amazingly well against the odds. It's a lot to take in and after these events there can be a fair bit of post trauma stress, compounded by all the drugs and your very weakened state.

    It's going to take time and patience, which is the very hard part. Hope you can surround yourself with supportive family and friends at this trying and painful time. Accept all help offered! If you are struggling do contact GP and district nurses.

    It must be so scary to look back and reflect on what happened to you. Thank goodness you are still with us to tell the tale.

    Take very good care xxx
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    Sorry I've not been around much lately, no real excuse. I can imagine how frustrated you must feel at the momenr, and how emotional. You've been through such a lot and now that you are at home, and starting to recover, allbeit slowly, the enormity of the past couple of months is bound to be having an impact. Yes, in time, you will find ways to use your experiences in your work, but don't hurry that return, take as long as you need, and then maybe a bit more.

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