Bad day

Hi all,

I apologise now for my little rant...

Today (well yesterday now, Thursday), I was supposed to go back into the Wellington Hospital for my 2nd infusion. As of 10pm last night, one of the secretaries still hadn't confirmed the time of the infusion. I woke up this morning on edge as both myself and my mother had taken the day off work and arranged to be back at home in order to pick my little brother up from school and take him to his after school activities etc.

At 11am there were still no timings and as I am currently staying with my parents, it takes 1.5 hours to get there. Soon after that, my immunologist called to say that he had arranged a bed for 3pm. As the infusions would take 6 hours, all of our plans were now completely out of kilter.

At 3am, we walked through the doors. The room was lovely, overlooking Lords again but this time with glass windows on three sides of the room. However, the nurse came in and said I had to go through the whole admissions process. 2 hours later, no infusion. My immunologist had to travel across London to sort it out and sign forms before they would start and I was getting increasingly

Once it was sorted we then went through the arduous process of trying to find a vein. 3 abandoned attempts later we found one and kicked off the IVIG, only for the line to fall out an hour later (it was precariously balancing in a tiny vein in my knuckle). I eventually walked through the front door at my parents house just before midnight.

What a day. I feel better now for sharing all of that. Hopefully I will wake up tomorrow to something better! I have a lovely weekend planned so keeping my chin up! :)

And the Doctor recommends...BOTOX?!

Yes, indeed, Botox.


Unfortunately not to smooth out the wrinkles on my 25 year old face but instead for my stomach. As a result of the Gastroparesis, which now looks to be caused by another autoimmune issue that has yet to be diagnosed, I feel nauseous a lot of the time and can be quite sick. The botox that I am having this afternoon will be injected into a valve, which should make food leave my stomach quicker and make it easier to eat. This may also relieve some of the pain in my chest and stop me inhaling food into my lungs.


I also went back to work last week which was quite strange. I think that I expected it to be exactly the same. The last time that I went into the office was last year and I was rushed into hospital in an ambulance having collapsed in the street. It was good to feel useful again though and the project that I'm working on is really interesting. It is right up my street, working with young people, education and helping them to gain the skills needed to find and secure a job: http://www.accenture.com/us-en/company/citizenship/Pages/skills-succeed.aspx. I'll be in the office again on Wednesday.


I'm also due to be having my second IVIG infusion on Thursday. Fingers crossed that they will start to make a difference - I'm starting to get very frustrated with still being ill.


So, a busy week ahead again but making big steps forward. x

How to sneak out of hospital....

Hello all,


I hope that you have all had a better week than I have. Today is Day 11 in "the largest independent hospital in the UK" and I am mightily bored, although I have had a few adventures this week. 


Wednesday saw the 'Start of Season Polo Party' at Mahiki, Mayfair. My mum and I had persuaded one of my Consultants to let me go as it would only be a small evening soiree and she would pick me up and bring me back. Of course we didn't mention the dancing, the 4 treasure chests and the fact that mum wouldn't be picking me up as she was 50+ miles away. 

Imi and Becks at Mahiki

11pm came and my parents were receiving frantic phone calls from the ward. These continued at 5 minute intervals until I casually rocked up at 1.30am with a drunken (but very lovely and amusing) friend in tow. I tried to sneak in but unfortunately I haven't had much practice of doing so recently and its much harder when there are two of you wobbling on high heels! My nurse was not best pleased but I'd had a great night, seen lots of old friends and fortunately he was in fits of giggles within a few minutes. I did feel like I was in the naughty corner the next morning though but the fun nurses winked at me and I became the cool 'rebel' patient for a day and was apparently the talk of the hospital. 


During Thursday afternoon. I went for a brief 5 minute walk. When I got back to the nurses station, I could barely breathe and had severe chest pain. By the time they got me back to my bed, I was unconscious and unresponsive. Within 5 minutes they had called the crash team and there were 15+ people in my room, with 3 senior doctors trying to get extra lines in. There were brief moments when I was aware of what was going on and it was utterly terrifying. 


They took me to intensive care to be monitored but in the past 24 hours, I've had 2 MRI scans (brain and chest), leg ultrasounds to rule out clots, x-rays and an EEG (a brain examination). Exhausting and unnerving. It is also quite a scary place to be because there are several people on their last legs who sadly are severely struggling, not to mention the fact that it looks and feels like a spaceship in every sense. It's been a hell of a week seeing as I primarily came in for a nasty infection as a result of my Primary Antibody Disorder. My diabetes is way back on the list of issues. 


I must just briefly add that today (Saturday 12th) is International Nurses Day and I must thank each and every nurse that has made this whole experience bearable. 


The real nurses, as in the ones who are truly caring and go above and beyond their role are the ones who make the world of difference at times like these and I have been fortunate to have had some of them by my side in recent weeks and months!


I thought I had escaped intensive care but not so and thus I am still here. However, it was my Daddy's 60th birthday a little while ago and I had bought Westlife tickets for us to go. The Doctor said I need to be very careful and have to come straight back but if all is well, I will be heading to the O2 this evening for an evening of 'light' entertainment. Fingers crossed I am OK or else I will be in the naughty books again. Every time I see my chest consultant I have that dreaded fear that reminds me of standing outside the headmistresses office at Junior school - utterly petrified and shaking in my little shoes. Dr Kon instills me with that same fear. I'd better be well behaved tonight or else I'll be in for the high jump. Monday and Tuesday will bring more tests including a sleep study and then hopefully I will be let loose. 


UKPIPS and its members have been providing me with fantastic support and advice and I am very grateful to them, as I am to all of you who have sent me such kind words and messages of support. I hope that my infusions aren't delayed too much by all of these events and I am looking forward to being well enough to visit you all soon!

PAD

It's been a while. I'm currently at the Wellington Hospital in London where I am being treated with IV antibiotics for a nasty infection. I am also having an endoscopy to work out why my stomach isn't working properly. 

The immunologist has also decided that there is no point in waiting any longer and that I should start the IVIG infusions (Immunoglobulin). I'm a bit scared about this but everyone I've met has said that it is a big step forward and that it really does work. Fingers crossed. 

Below is a short poem for UKPIPS - the organisation that supports people with immune system disorders like mine:

"Why am I ill?"
I continuously said
As my mother used a wet flannel to dampen my aching head

"You'll get better soon"
was her repeated reply
as I lay there feeling like I was going to die

Fortunately, to my rescue came a renowned immunologist
who understood my pain, my tears
and why I had so many fears

Another bout of illness and to the hospital I was sent
The lack of veins and more needles added to my torment

But at least now I know the illness that is affecting me,
I can stand tall and proudly say, "I have CVID"

So now I look to the future
and IVIG is next
I can't wait to feel better and not like I've been hexed

I've met some great new friends
Through a group called UKPIPS
They give me strength for life's adventures
and keep me strong through the many blips.


Thanks to all of you who have been at the end of the phone (or online). It really does make a big difference knowing that you are all there!

Lots of love from a brighter and more hopeful me x