In hospital (again)

[beckag87]

Hi all,

Just a quick vent as I'm in hospital again. I'm at the Wellington Hospital in London and have been here since Tuesday. It's getting rather tedious now.

I am so tired that I can't read or concentrate on very much but I have at least managed to connect to wireless.

I'm on IV antibiotics for the infection and they are trying to figure out why my stomach doesn't work properly. So far I've had two Barium meals and it looks like I will have a procedure on Tuesday whereby they will feed a tube down my throat to look at my stomach.

Sorry to moan, I am just absolutely fed up of being poorly now. There is no respite, it's just continuous. I did see my immunologist last night though and he said that it is very likely that I will start the IVIG next month. I'm relieved as I think that this will make a big difference. However, I'm just confused about what to do in the meantime when I'm ill. I don't want to be a pain to the doctors as we know what it wrong and its just a waiting game until get the IVIG but I also can't cope without being seen by a doctor. I think this is something that we could do something about/information we could provide (what to do when we are ill/knowing how to judge how serious it is).

As a diabetic, we have 'Sick day rules'. www.diabetesuffolk.com/ManagingDiabetes/Sick%20day%20rules.htm
www.diabetes-healthnet.ac.uk/Documents/Uploaded/sick_day_rules_for_patients_with_type1_insulin.pdf

Can't wait to get out of here but it looks like I'm going to be here until at least Tuesday. If there is anything that I can help with then please let me know - I am tired but my brain needs some exercise!

Becks x

[john]

hi becks,
i'm so sorry to read that you're in hospital. i know it's a holiday weekend and you probably want to be home, but i'm sure you're in the best place.
the wellington is a very comfortable hospital, so why not kid yourself you're having a luxury weekend break in london, and the weathers so awful you just don't want to go out? might work!!!
i think you have described an endoscopy test. i have had quite a few of those now, and if you're lucky you won't feel a thing!! they gave me a wonderful sedating injection and i just fell away into this very relaxing sleep, and when i woke up it was all over!
i'm sure if it were me i would be happy to postpone the ivig till i was feeling better. don't worry about seeing the doctor, that's what they're paid for, if they didn't have patients they wouldn't have jobs!
keep us in the loop as to how you're getting on,
take care - john

[liz2mac]

Hi Becks,
Now does the Wellington provide you with those nice sachets of shampoo, shower gel etc? If so, I agree with John, though I'd opt for a fantasy cruise. I'm guessing the mini bar is off limits to you? What about the all night room service. Can you eat/drink at the mo or are you on nil by mouth? Hot chocolate at midnight is my best treat! Seriously love, I'm so proud of you, you have been through so much and are still battling on and wanting to do some work! Wow, you're some lady. I'm going to email you some things to have a look at give me some ideas on how to progress. Also I'm going to cc to a young gentleman who is interested in working on one of the projects. You and he may well work well together. HOWEVEr, this is only to be distraction therapy and please promise me you won't tire yourself.
Liz

[glowing]

Hi Becks,
Get well soon.
Glowing

[mali42]

Hi Becks

I hope you get better soon and they let you out, also you have lots of visitors to break up the boredom

Best wishes Malcolm

[beckag87]

Hello all,

Apparently my antibody levels have fallen even further so I think it has been decided that I will start the IVIG whilst I'm here. I'm just waiting to see the consultant to get some more info but at least I'm making some headway.

I'll update you all when I know more.

x

[gilliem]

Hello Becks. If your hospital stay is going to bring forward your start onivig, try to look at it as an unexpected bonus. It's what I had to do when my first ever hospital stay 10 years ago turned into a diagnosis with CVID! I can't bear to think about how much longer I might have soldiered on, wondering what was the matter with me if I hadn't been admitted.
Best wishes,
Gillie.
PS I've had a couple of endoscopies, too. As John says, the injection works very well and when
you wake up, it's al over.

[beckag87]

Hi Gillie,

Thank you for your reply. I do feel that it is a bonus - the doctor said that I shouldn't be suffering any more and so that it would be a good idea. Having read all of the information on here, I feel much more confident that it is the right way to go. I also feel reassured about the endoscopy so thank you and also thanks to John!

Becks

[s162216]

Hi,

What your going to be having is called a 'gastroscopy' where they literally push an endoscope down your throat and into the stomach. I've had three of them, the first two were under sub-general anasthetic as I was young and quite nervous, but the third one which I had a year ago nearly I had to do without sedation as I was going back by train by myself.

In case they decide you can't have sedation (they do sometimes as the sedation may make the person worst in some conditions), trust me its not bad at all. The actual endoscope looks massive but it fits in fine and theres only a but discomfort when they put it in, although it feels like your choking on something hugh that you can't get rid of. Overall though its not bad at all and only lasts a couple of minutes (its better than having a colonoscopy without sedation like I had to a few months ago!)

Good luck with everything and hopefully everything will be fine.

Sam

[beckag87]

Hi all,

I'm having the gastroscopy/endoscopy today at 7pm and am now nil by mouth. No idea how I'm going to last 6 hours without food! Eating and watching TV are my main activities at the moment.

Thanks Sam for explaining the procedure - I feel much better about it now that I understand it. The doctors are great but I do find that I need to ask them to slow down or to explain bits and pieces. I think its because we are seen as 'expert patients' and know our conditions inside out - I do know my diabetes but the immunology side is all new to me.

Looking forward to escaping here. My immunologist hasn't decided yet whether I will stay here and start the IVIG in a few days or if I should go home and come back in a week or so to start the infusions.

That's my news. Hope you are all ok too!

Becks

[glowing]

Hi Becks,
Good luck this evening. Will be thinking of you.
Glowing

[john]

hi becks,
good luck for this evening, and hope they'll let you out for good behaviour very soon!
take care - john

[emsy]

All the best Becks. I bet you can't wait to get home from your luxury sleep over. Zach and I are home tomorrow all being well :-)

[liz2mac]

Hi Becks,
I'm hoping that it all went well and that the Dr's will have got some answers for you and a plan of action due to those answers.
Liz

[s162216]

I'm having the gastroscopy/endoscopy today at 7pm and am now nil by mouth. No idea how I'm going to last 6 hours without food!

I think its because we are seen as 'expert patients' and know our conditions inside out - I do know my diabetes but the immunology side is all new to me.

I'm diabetic as well and had to go for almost 20 hours without food when I had a colonoscopy a few months ago (and there was an hour and an half holdup despite me supposedly being second on the list!), it was a nightmare as I had the bowel preparation and I was starving (I ended up putting all the food in the kitchen and staying out of there!). Despite me reducing my insulin pump basal rate to 20% of normal, it still dropped and I was forced to drink sugar dissolved in warm water (I've never like Lucozade which is what they told me to drink) to raise it. As I was unable to have sedation because I had nobody to take me home, I was out within an hour or so (but not before I had eaten the provided biscuits and coffee etc ad lib!) I had a nice big lunch and then slept for quite a few hours.

I get the same thing about being an expert patient with my insulin pump, apart from any diabetes department staff, nobody understands it and last time I was in hospital I ended up explaining it to 3 consultants, 3 registrars, 4 junior doctors, about 10 members of the nursing staff and 1 student nurse as they were all fascinated by it! I even had three doctors come and have a 'seminar' with me on how it worked and I answered all their questions. Still I ended up deciding what to do with it most of the time (it caused a lot of staff to ask why I was not on a sliding scale though as I had been admitted with moderate DKA resulting from a rapid, surprise infection that had caught me unaware) as none of them knew anything about it apart from the doctor in the ED and a diabetes specialist nurse who came to see me. Changing a subcutaneous insulin cannula in my bottom was an interesting experience as I couldn't bend my arm properly due to the IV in the ACF.....

Hope everything goes well for you!

Sam

[liz2mac]

Good grief Sam, if we have an award for undertaking the most difficult procedure on self, then I think you've just won it! Well done for all the teaching you did as THE expert patient. Its fine when we feel well, but NOT so easy when we feel bad and just want to be looked after.
Liz

[beckag87]

I went out tonight and co-hosted the Start of Season Polo Party at Mahiki (in Mayfair).

I had such a good time and for a change I felt really normal and back to my good old self. Bring on the IVIG next week! I can't wait to get back in the saddle and feel like me again.

[beckag87]

Hello all,

Yesterday I collapsed on the ward and was completely unresponsive for quite a while. For about an hour I had the whole crash team in my room as well as my nurses, the ward sister and some medical students. It was busier than Clapham Junction!

They took me to the High Dependency Unit which didn't have a bed so intensive care has been my home for the last 24 hours but I am now back on a ward, in a nice room again but I'm not allowed to get up in case I 'collapse'. I've had a battery of tests done including two MRI scans, one of my chest and one of my brain, an EEG, ultrasound of my stomach and my legs etc (all today).

I'm pretty tired but also very fed up as today is day 10 and this is all somewhat hindering my social life

Hope that you are all having more luck than I am this week. Becks x

[emsy]

Oh Becks that sounds really scary. I hope you are OK. Baby Zach and I are now at home after our horrible week in hospital, hopefully you will be able to go home soon too. Best of luck x

[glowing]

Hi Becks,
What a rough time you are having. It must have been frightening for you. I do hope you will feel much better very soon.
Glowing