Being admitted to hospital on Monday

Starburst
Starburst Member Posts: 2,546
edited 13. May 2019, 11:05 in Living with arthritis
As some of you know, I have Myasthenia Gravis as well as RA. It’s a neurological autoimmune disease and the plan had been to attack both with methotrexate and rituximab. Unfortunately, my muscle weakness has been a concern. My breathing muscles are only working half as hard as they should and my swallowing muscles are weak which means food and liquid is getting in my lungs leading to frequent pneumonia. I have other MG symptoms but these are the ones which pose the biggest problems. Due to all this, rheumatology and neurology say suppressing my immune system could mean I get very severe pneumonia again. The only option is to be admitted to a neurology ward for IVIG (intravenous immunoglobulins) which is when normal antibodies from generous blood donors will be infused into me to reduce the bad antibodies which are making my muscles weak. Hopefully, it’ll allow me to gain enough strength to be fit enough to start rituximab. My RA is raging away with only a small amount of methotrexate to hold it at bay.

I only saw neurology last week, so it was a surprise to find out I’ll be admitted next Monday. They’ve said it’ll take 3 to 5 days, depending on how well I tolerate the infusion. I’m a bit nervous as it’s not my local hospital, I’ll be short on visitors because there’s virtually no parking and public transport is a bit rubbish, also a few friends are on holiday. I really hope I’ll be home for the Easter weekend.

I’d be lying if I said I wasn’t nervous but I keep reminding myself it’s all means to an end. The hope is that it’ll give me a much better quality of life. If nothing else, it’s a good excuse to buy new pyjamas!
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Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    I wish you well, Starburst, it's about time that something goes better for you. Please let us know, as and when you can, how things go. ((( ))) DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,331
    edited 30. Nov -1, 00:00
    Sophie, I love your attitude: and hate the way life is treating you.

    I don't have MG but I spent a week in ITU in January with pneumonia and a collapsed lung so I have some idea of your difficulties, especially given my own swallowing problems due, mainly, to the OA in my neck.

    I'm away to California on Monday so can't promise to be fully compos mentis either then or the following few days (or, indeed, ever :roll: ) but I wish you the very best of luck and shall look forward to reading some good news when you feel up to posting.

    t115006 t115006 t115006
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • BettyMac
    BettyMac Member Posts: 170
    edited 30. Nov -1, 00:00
    Best wishes for next week, Starburst.

    I hope it goes well for you and that you’ll be able to get some improvement in both conditions.
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Thinking of you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • GraceB
    GraceB Member Posts: 1,598
    edited 30. Nov -1, 00:00
    I hope all goes well next week. I'll be thinking of you. (Hope there's at least 1 dishy Dr or Nurse to look at - it'll help pass the time! :lol:).

    Take care,
    GraceB
    Turn a negative into a positive!
  • mig
    mig Member Posts: 7,150
    edited 30. Nov -1, 00:00
    Will be thinking of you on Monday. X
  • Terminallypretty
    Terminallypretty Member Posts: 6
    edited 30. Nov -1, 00:00
    Wishing you all the best and hope the hospital stay gives you good results, if you’re low on visitors, get on this for a chat xxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    (((( )))) DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stellabean
    stellabean Member Posts: 303
    edited 30. Nov -1, 00:00
    Good luck Starburst hope your treatment goes well.
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    Thinking of you Sophie, and hoping things go well.
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Thank you so much for the support and kind words. xx
    I’m here but not starting the treatment until tomorrow.
    Hoping to get a good sleep, I’m exhausted!
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    Hope you managed to get some sleep Sophie, and that all goes well for you today. Thinking of you.
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Best of luck for today, my lovely, I hope that whatever they do it's not too unpleasant. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Thank you for the support. I feel quite poorly but I should see improvements in about a week.
    They were worried about my breathing and I’ve had intensive care doctors visiting twice a day, each time suggesting I may need to be there instead but I’ve managed to keep myself on the neurology ward. I hope they don’t come back again tonight because I’m exhausted.
    Fingers crossed for home soon.
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    I've been doing patchwork so can't cross my fingers but hope you are home for Easter. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    Hope you are starting to feel a bit better and fingers crossed that you get home for Easter
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    I came home yesterday, yay! I’m very weak and tired but appreciate the support x
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    Glad you made it home for Easter. Enjoy the sunshine
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    I'm so pleased you're back, I hope you are feeling OK and take things easy for a while, yes? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • moderator
    moderator Moderator Posts: 4,088
    edited 30. Nov -1, 00:00
    Dear Starburst,

    So glad you are home again. Now you can start to recover properly. Here’s hoping each day brings a little improvement on the last

    Love

    Yvonne and all the Mod team xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Hello, how are things? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • frogmorton
    frogmorton Member Posts: 26,885
    edited 30. Nov -1, 00:00
    I'm so glad you are safely home Starburst :)

    I hope you aren't needed back at work soon and can continue to recuperate for a while longer.

    Love

    Toni xx
    Love

    Toni xxx
  • stickywicket
    stickywicket Member Posts: 26,331
    edited 30. Nov -1, 00:00
    Carry on recovering. I hope the benefits are starting to emerge.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    I’ve been asleep or resting for the best part of a week. It has paid off. The IVIG has kicked in and it’s working. :D I didn’t realise how bad things were until they started to improve. This is only temporary and I’m hoping I will be well enough to start rituximab but there are some concerns and it may be that I need repeated IVIG for Myasthenia. This leaves a question mark over treating my RA which makes me anxious but there’s not a lot I can do about it at this point.

    Being in hospital and the concerns they had made me realise I have been pushing myself too much and that it’s far more serious than I ever believed. My GP signed me off until 6 May (my birthday!) but if I am up to it, I’d like to go back next week instead. Logically, this is probably not sensible but I’ve promised myself not to make any rash decisions. It isn’t great for my mental health to be stuck at home but my body has been pushed to its limit, so I need to be balanced.
  • stickywicket
    stickywicket Member Posts: 26,331
    edited 30. Nov -1, 00:00
    I didn’t realise how bad things were until they started to improve.


    How often does this happen? With monotonous regularity for me but does that make me see the error of my ways? Certainly not :roll:

    Now then, Sophie, I want you to re-read the first two sentences of your last paragraph. Do you really think you've learned :wink: I understand the need to get away from the same four walls but how about a bit of nice leisure time? Not as demanding as work.

    Great to hear it's helping, though. For now, let the RA take a back seat. ((( )))
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright