Never Give Up (Churchill)

I'm back again...

Wow - it's been more than 2.5 years I think since my last post and what a crazy few years it has been. I spent 9.5 months of 2014 in hospital and have spent less than a month at home in 2015 (only a month to go and I'm writing this from hospital).

Strangely it hasn't been my immune deficiency that has been the direct cause of this. I have been suffering from severe vomiting and nausea attacks. They started in November 2013, with a horrific 4 day bout of uncontrollable sickness. Every anti-emetic they could think of was tried and nothing seemed to help ease the nausea or stop the vomiting. During this time, my blood sugars would rise and so would my ketones, making the level of acid in my body very dangerous and close to a coma. To start with these episodes would occur once a month but quickly progressed. A month ago it got to the point that I would recover, be discharged from hospital and be back in A&E with hours, in resus, with it all happening again. I have no veins at all anymore - looking back at previous posts I realise that they have always been bad but it got to the point where I had been taken to the operating theatre 4 times in 4 weeks to insert a central line.

 I saw the UK's leading consultant for Gastroparesis (diagnosed in 2012, when the nerves don't work so your stomach paralyses). He had no available appointments at all on the NHS as he was doing so much lecturing and handing over as he was/is due to retire. He suggested Lorazepam to sedate me during the episodes and whilst we had no answers as to the real cause of the problem, this got me through the horrific days. He also suggested knocking me out for a month, apparently an old school method of resettng the nerves but we opted against this.



This year, I had a doctor supposedly in charge of my care who refused to follow this plan of relief and told me that I would just have to 'suffer and work through it'. So, after much deliberation, I changed hospitals. After a few visits, I was put under the care of a doctor who was determined that he could solve all of my problems with 'more insulin'. He refused to let anyone cannulate me so I had no fluids and would end up extremely dehydrated and vomiting blood. I would then be in a really bad state and the emergency doctors would have to stuggle to treat me. He also told me that the Gastro Consultant at the hospital refused to see me. Despite having vomited for more than 2 years, it was only a month ago that I actually met this very gastro doctor - fortunately I'd managed to transfer to a new Diabetes consultant who helped  me in A&E and realised that something just had to be done. The Gastro consultant I thought was draconian was in fact charming, helpful and lovely, he told me he'd do anything to help and didn't refuse to see me at all. There's a lesson to be learnt from this.


After much jiggery pokery (and a lot of  badgering) we have now found another tip top Gastroparesis consultant who is convinced that my problem isn't solely gastroparesis and that further investigations and tests are needed. So here I am at 'Europe's leading gastro centre'. It has taken so long to get to this point and we (myself, mummy and UKPIPS) have had a real fight on our hands. I don't know how long I'll be here for and I have no idea what tests are planned but I will probably find out soon. Fingers crossed they can find a way to fix me. I have also almost lost my sight - I am officially categorised as 'Blind/severely sight impaired'. However, I managed to see a white polo ball on the green grass albeit in close proximity so for nw that is good news.

I have managed to escape a few times this year...a charity polo day and riding my amazing old polo pony (Fizz), a rugby world cup game, a West End Musical, events at the O2, a day filming for a biopharmaceutical company etc. Now I'm just imagining an amazing holiday in the Maldives, Seychelles or the Caribbean! As Churchill famously said, 'Never give up!'

Rare Disease Day

Yesterday, the last day of February (and where possible, the 'rare' 29th), is Rare Disease Day. 2013 is the 6th year of celebrating international Rare Disease Day, with hundreds of patient organisations from more than 60 countries and regions planning awareness-raising activities based around the slogan 'Rare Disorders without Borders'. 

I was fortunate enough to attend the parliamentary reception at the Houses of Parliament with my mum on behalf of UKPIPS. The Earl Howe (Parliamentary Under-Secretary of State for Quality at the Dept. of Health) talked about specific pledges and made it clear how important it is for each patient with a rare disorder to have a care coordinator. This is something that I would really benefit from as trying to manage over 10 different consultants, GP, various hospitals, clinics etc is confusing and time consuming, not to mention frustrating. 

It was also really interesting to meet patients with other disorders and rare diseases that I hadn't encountered before but who suffered similarly. 

It's coming up to a year since I was diagnosed with CVID and I can't believe how quickly the time has gone. It's also now been 2 months since my last hospital admission. As a treat, I'm flying to Poland with my lovely friend., George, and straight after that flying to Argentina. 6 months ago I couldn't foresee this. Friends, work, polo, good food/wine and puppy....2013 has started off really well and I hope that this is set to continue.

X 

2013!

Wow! It seems like a lifetime ago that I last updated this. I hope that it finds you all well. 

Well what a start to 2013. Having had a horrible end to the year (with Type 2 respiratory failure and a stint in hospital/intensive care in Spain just after Christmas),  I seem to have bounced back for the new year. 

It's now been 5 weeks since my last admission - a record for the last 2 years. This has certainly given me a lot of hope for the year ahead. I'm playing polo again which is giving me added incentive to stay out of hospital and I'm really enjoying seeing my old polo pals again. So things are looking up but I'm pacing myself - don't want to jump the gun. 

My new puppy.....

Another exciting development is that I disappeared for a few hours the other day on an adventure to find this little one. 

She comes home on 20th Feb but at the moment has no name - any ideas anyone? I fell in love with her straight away and can't wait to have her at home. She will give me a reason to get up in the mornings even if I feel really poorly. I'm going to take her to puppy training classes as I know that I will be too soft to do this by myself :) 


I think everyone's starting to get annoyed with me now - I've been jumping up and down and running around like a 4 year old since I got back from seeing her. 

To all of you that I haven't seen recently, I apologise. I will get there - it's all just taking a little bit longer than I anticipated. Thank you for bearing with me. 

Lots of love x

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