Being admitted to hospital on Monday

Starburst

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!

dreamdaisy

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

stickywicket

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

BettyMac

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

Thinking of you. DD

GraceB

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! ).

Take care,
GraceB

mig

Will be thinking of you on Monday. X

Terminallypretty

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

(((( )))) DD

stellabean

Good luck Starburst hope your treatment goes well.

daffy2

Thinking of you Sophie, and hoping things go well.

Starburst

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

Hope you managed to get some sleep Sophie, and that all goes well for you today. Thinking of you.

dreamdaisy

Best of luck for today, my lovely, I hope that whatever they do it's not too unpleasant. DD

Starburst

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

I've been doing patchwork so can't cross my fingers but hope you are home for Easter. DD

Slosh

Hope you are starting to feel a bit better and fingers crossed that you get home for Easter

Starburst

I came home yesterday, yay! I’m very weak and tired but appreciate the support x

Slosh

Glad you made it home for Easter. Enjoy the sunshine

dreamdaisy

I'm so pleased you're back, I hope you are feeling OK and take things easy for a while, yes? DD

[Deleted User]

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

Hello, how are things? DD

frogmorton

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

stickywicket

Carry on recovering. I hope the benefits are starting to emerge.

Starburst

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. 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

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 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. ((( )))