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Update

Posted , 9 users are following.

Susanne_M_UK
Susanne_M_UK

I haven't been posting much lately, too busy keeping my appointment diary up to date! I'm having so many investigations at the moment that there isn't time for much else.

Following my PET scan in May, my rheumy decided that I needed to see a haematologist to check on inflammation on my spine spotted on the PET scan. I'm currently waiting for appointment letter for a further full body scan.

Next is a bronchoscopy to check my lungs, there is still crackling and something there since pneumonia during August. My voice has also got more and more hoarse and tight, in addition to being quite out of breath. That's scheduled for 1 December. They will also check for TB. I had a skin test, but had no reaction, no doubt masked by the pred.

I found out that if you have latent TB, methotrexate can activate it. Of course, I had 6 months of Methotrexate until I could no longer cope with the side effects.

Then I saw my gastroenterologist for my 6 months check up. She had warned me before that she might request a liver biopsy, and she said she now wanted this to go ahead. Although my liver enzymes are mostly good, one enzyme is not and she wants to have this done, as she says that there are too many uncertainties about my health and once you have an autoimmune illness, you could get liver immune disease. My liver is already fatty. Its also a good time to do it, as I've managed to taper the pred down to 15mg, so it won't mask any symptoms as much as it would do on a higher dose. This is scheduled for 5 December.

Also coming up mid December is a scan on a nodule on my lung.

That's it at the moment, I think!

I've managed to taper to 15mg pred, which is the lowest I've been since GCA started 2 years ago. I don't feel particularly better, I'm still very fatigued and rest/sleep a lot. I've still got a horrible round face and am still very overweight, a bit of a vicious circle though, I'm too exhausted to exercise or walk any distance, so am not using up many calories.

I manage to get out for my weekly art group and the odd brief outing to the shops or lunch with friends, but really, life is not very exciting right now.

And...I'm going to the Chertsey Support Group Christmas do on 6 December (the day after my liver biopsy, so may hobble in!) and really looking forward to that.

0 likes, 116 replies

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  • Susanne_M_UK
    Susanne_M_UK

    Posted

    Thank you for all your good wishes. 😊

  • Susanne_M_UK
    Susanne_M_UK

    Posted

    Just heard it's a general anaesthetic. Quite pleased in a way, as I suspect it will be painful. Liver biopsy certainly was despite local anaesthetic.

  • Susanne_M_UK
    Susanne_M_UK

    Posted

    I had my bronchiectasis follow up this afternoon. It turns out that they discovered a nasty bug called pseudomonas in what they extracted from my lungs. It's resistant to most antibiotics, so I've now been given some that are supposed to work. What I don't understand, and I should have asked, but was busy taking it all in, is why they didn't tell me or my GP earlier. I told the consultant that I had had a chest infection and been on antibiotics, but that they hadn't worked particularly well. He immediately said, oh, they won't work. Pseudomonas is not all that dangerous for healthy people, but for people with a low immune system, it can turn very nasty. What's the matter with the medical system when they wait a month before telling me!

    I was also prescribed an inhaler, to be used twice daily. Yes, it contains steroids!

    Physio to follow to learn breathing exercises to help clear my lungs. It may take a while, as there is a waiting list. Another CT scan in 6 weeks time.

    I also heard from St George's Hospital and will be going in tomorrow evening. I will be in my own room in the Haematology unit, very sterile, but apparently very nice and comfortable rooms. Hope the food is good too! Hope to go home some time Friday, but it will depend on how I get on.

    That's it for now. 😊

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Susanne_M_UK

      Posted

      "That's it for now.?" 

      I should think that's more than enough for you to be getting on with, Susanne!

      ?That's terrible that you have been left for a month without being told what they found in your lung biopsy - you would have thought that treatment would have been instigated immediately.

      I hope all goes well for you in the next couple of days and you're back home recovering by the weekend.  I should think by then you will have seen quite enough of hospitals to last you a while! 

    • stella-dk
      stella-dk Susanne_M_UK

      Posted

      Hi Susanne

      You really have gone through a lot. I will be thinking of you on thursday an send up prayers that all goes well. I also send you a virtually hug.

      Good luck.

      Stella

    • linda17563
      linda17563 Susanne_M_UK

      Posted

      Hope all goes well for you, I must have been lucky (so far) to have got over the pneumonia I had just before Christmas.  I haven`t had antibiotics for at least 10 years, and my thinking is maybe that`s why they have worked for me.....have you had any recently?

      I hope all now goes well for you and they at last sort you out!  keep us posted

      Good luck....

    • Susanne_M_UK
      Susanne_M_UK linda17563

      Posted

      Thank you Linda.

      I've had two severe chest infections, including pneumonia, in the last year, both needing hospital stays and strong antibiotics. Plus a couple of milder ones, also needing antibiotics. The reason the last lot didn't work was because the particular bacteria, pseudomonas, is resistant to most antibiotics.

  • Susanne_M_UK
    Susanne_M_UK

    Posted

    Well, would you believe it. I was literally about to go down, porter standing by my bed, when they cancelled the biopsy.

    The anaethetist came to see me this morning and went through my medical history etc. When I told her I was on antibiotics for the bacterial lung infection, she said I should have been asked about infection when the staff called to admit me, but obviously didn't, probably because it's a medical ward, rather than a surgical ward. Anyway, after she consulted with the radiologist, they decided it was too risky to go ahead and would wait until I've finished antibiotics and over infection, so probably in 2 weeks time now. I may hear tomorrow.

    I'm fed up, frustrated and very tired. Didn't sleep well last night in hospital.

    • stella-dk
      stella-dk Susanne_M_UK

      Posted

      I´s good they didn´t do anthing risky, but it is bad that they wasted your time and energy by not making sure what you current medical situation is. I hope you get some rest now, and that you soon feel better.

    • macas02
      macas02 Susanne_M_UK

      Posted

      Oh Susanne I am so sorry, its so hard to face all these tests and then as you are just about to go down its cancelled...Try to rest now that you are home. 

      Thinking of you

      Mary x

    • linda17563
      linda17563 Susanne_M_UK

      Posted

      Yes I would believe it, nothing surprises me anymore with the medical profession!.......or that you didn`t sleep in hospital.....

      ​Hope it gets sorted for you soon....it`s the waiting that`s worse.....

      Good luck

       

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Susanne_M_UK

      Posted

      I must admit I wondered about the infection and medication when you mentioned it was to be a general anaesthetic.  So frustrating for you Susanne, but far better they realised in time and didn't put you through unnecessary risk.  At least you'll sleep well tonight in your own bed and hopefully will soon recover from the infection.xx

    • FlipDover_Aust
      FlipDover_Aust Susanne_M_UK

      Posted

      Oh dear. I'd be rightly cheesed off (these are not my usual words under circumstances like this!).

      How bloody annoying!

    • Susanne_M_UK
      Susanne_M_UK FlipDover_Aust

      Posted

      I actually raised my voice to the porter who was about to take me down and who had the audacity to moan about wasting his time and told him that it was me who should be upset and not him!
    • Susanne_M_UK
      Susanne_M_UK MrsO-UK_Surrey

      Posted

      I even saw the medical Doctor who was doing the ward rounds the evening before. We went through all my meds. We talked about the antibiotics and what they were for.

      Still, he didn't even know you could get pred in 1mg tablets, so why am I surprised!

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Susanne_M_UK

      Posted

      Sounds like he was on another planet when you were speaking to him!  I wonder if someone's head has rolled!  

      I've often been left surprised by how little some doctors appear to know about medications - that's why I prefer to trust a pharmacist every time where medication is concerned!

    • Susanne_M_UK
      Susanne_M_UK MrsO-UK_Surrey

      Posted

      My pharmacist is a treasure and also calls me in for med reviews every 6 months or so.
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