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

Zebras

On Saturday (yesterday) I attended the World Immunology Day symposium at the Russell Hotel. I learnt a lot about PAD (Primary Antibody Disorder) and also met a lot of people suffering from various other immune deficiencies. It made me feel part of something, that there are other people out there who understand. 

It is so frustrating to make plans only to have to cancel them or change them at the last minute. I am learning now to warn friends and family that my plans have to be flexible and that if I can make it, I may not be 100%. One of the most frustrating things about it all is wanting so desperately to be well. I put some make up on and a smile and everyone thinks that I look healthy but so often this is not the case. Even if I am well on one day, I may be laid out the next and incapable of doing very much. 

Today I found out that as primary immunodeficiency patients we are known as zebras. At medical school, doctors are taught "when you hear hoof beats, think horses, not zebras", focusing on the likeliest possibilities when making a diagnosis. As PAD patients, we do not represent the norm, we are "the zebras of the medical world". 

Last summer, I woke up every day that I was in Spain feeling extremely ill, shivery, tired and fed up. I lay by the pool and looked for the zebra whose home was the private nature reserve that the villa overlooked. I can't help but think that it was a sign in some small way. To me it seems significant anyhow. 

I've also been diagnosed with Post Traumatic Growth (Tedeschi and Calhoun, 1996). It is a reaction that occurs in some people after a period of extreme suffering. Supposedly it is a positive response to the way that I view my life and has been described as a profound change in my understanding of the world and the people in it. It also results in a dramatic change in my priorities. Things that used to matter to me seem redundant but I have new priorities and as I mentioned before, a new path to follow. Despite feeling weak and poorly a lot of the time, I feel much stronger in myself. I feel a deep sense of personal worth and am much more understanding. I accept that this is the way I am and how my life is going to be - I just need to do everything that I can to make my life as 'normal' as possible. 

At the symposium I learnt a lot about the IVIG/subcut immunoglobulin. It may be possible for me to do this at home rather than having to go to hospital. Depending on the dose that I can tolerate in one go, the number of days every month may also be reduced from 5 to more like 2 or 3.

Regardless of what happens, I have hope and I am learning to be proud of my stripes.

For more info about PAD and other immune deficiency disorders please visit the UKPIPS website - they are doing a fantastic job and provide support to patients and families. To me, the pictures on the homepage signify a sense adventure, exactly what I need to be looking forward to: http://www.ukpips.org.uk

The days that shaped me...

In my Head Girl speech at Coll on Speech Day, I addressed the school, parents, teachers, friends, Huw Edwards and the Trustees with the following quotation:

"Do not go where the path may lead, go instead where there is no path and leave a trail" (Ralph Waldo Emerson". Co-incidentally, written on the prizes that I was awarded there is a message from each one of my teachers. 

One such example is as follows: "leadership is the art of getting someone else to do something you want done because he wants to do it (Eisenhower). You have an extraordinary talent to make people willingly follow your lead. Continue to learn and lead by example".  

2012 has thus far been a year of learning. It also looks to be full of opportunities to shape young minds. I am not where I thought I would be when I was standing at the lectern looking out at all of the anticipated faces, young and old. So much has changed for me since my school days. I am no more a cynic than the next person but I can now see how difficult life can be for some. Up until now I have had a very privileged life. My parents have worked tirelessly to give me the education I received. St Davids Girls School, Lady Eleanor Holles and Llandovery College, finally ending up at Warwick - not a bad run, though I must admit to putting 100% into every sport and activity.

Last night I met one of my oldest friends,  Morgan (Seb). We were reminiscing about being tired and cold in the middle of a field in Pembrokeshire, covered in mud and camo on stag at 4am and attempting to ambush the rebel PANTS army the next morning (the People's Army of North Templeton Soldiers), being taken as prisoners of war and still having beaming smiles despite not having eaten anything other than biscuit browns and boiled sweets for two days. There were the endless days in tents trying to bribe my friends along the coastal path with Haribo, chilling with the Duke of Edinburgh with a cup of tea, the day Morgan saved my life on Pen y Fan, days of swatting on Economic policies to present to the Bank of England when none of us actually studied Economics, racing a tall ship to Antwerp and getting caught in an horrific storm, getting lost in Cologne on Choir Tour and eating bratwurst with some travelling monks, attacking the younger girls with silly string and taping them into their beds in Ty Llanofer (boarding house) with gaffa tape when they set the fire alarms off in the middle of the night or throwing icy cold water over them when they turned the shower off. 

Performing a Royal Salute on horseback for HM The Queen at Royal Windsor...getting rather 'squiffy' and persuading a whole camp full of officers and CTT to jump into the back of one single van and go to some shady club in Weymouth only having to call the Security guards to come and drive us back to base at 7am...jumping out of Chinooks at Nesscliffe on UKLF with all guns blazing having gone to war because the Middle East were controlling the world price of milk chocolate...7 D of E Gold expeditions in Canada and standing on the top of Bow Glacier. I dearly miss the enthusiasm that we all shared when we were cold and wet, didn't know what we were doing next or what we would be asked to turn our hands to and were always bright and bushy tailed at 6 am. I can honestly say that I never learnt more about myself or the human race than when we were faced with what we thought was adversity. 

However, I now face a new challenge and am trying to stare adversity in the face as after all, 'these things are sent to try us' (thanks Mr Rees). All of the worldy knowledge that I have accumulated outside the classroom is coming to fruition. Books and science can only help so much, for once you know the theory you must have the gumption to put it into practice. 

I can honestly say that I have now chosen a new path...well I am exploring a new one at least and I do not intend to tread lightly. I have never been one to follow without due reason or unless I didn't think I was equipped to lead myself. I have always preferred to go my own way with the knowledge that I have gained, my mind which I trust implicitly and a little (or a lot) of help from my friends. 

The last inscription in my Warden's (Headmaster's) prize: "What lies behind us and what lies ahead of us are tiny matters compared to what lives within us" (Henry Thoreau). Watch out because I'm well and truly back. A new perspective on life, perhaps, but my trail is blazing ahead. I will continue to learn.

Relieved to have grown up without this

All I can say is that I am so lucky that I managed to get through PID without being chronically sick throughout my childhood. Having done a lot of reading etc there are so many children struggling to fight this before they even get to adulthood, some don't make it at all.


I've managed to avoid deadly germs/bacteria/infections as a child, I have no idea how. 


http://www.youtube.com/watch?v=UNH45QRffEY


If you're feeling brave watch this (I went through a packet of tissues):


http://www.youtube.com/watch?v=A-Bfu0SimME

My birthday

The 24th (Saturday) was my 25th birthday - something I had both been looking forward to and dreading. I feel a bit like Peter Pan in terms of not wanting to grow up. At least with a 12 year old brother there is little chance of me being allowed to be grumpy and losing my playful streak.


However, I went to a lovely country hotel on Friday evening and woke up to a massive breakfast, beautiful sunshine, time in the Jacuzzi and met by the family with a glass of wine. 


Newbury was beautifully sunny and the horses looked magnificent, with gleaming coats and the smell of saddle soap wafting from the parade ring. Despite missing my two little sisters, we had a lovely family day, joined by a lovely friend (George) who has stuck by me through thick and thin this year. The champagne flowed and we all seemed to have a couple of winners. 


The week before my birthday brought with it huge revelations, with the diagnosis of the antibody deficiency. Hopefully my birthday will kick off a new year of improved health and a bit more luck. 


Last week I also went to the 02 for the Gaucho Polo. Along with a dear friend, Imogen, we hit all of the after parties including the VIP bar, Veuve Cliquot, Gaucho VIP and Indigo2. We eventually got back at gone 5am with a Veuve Cliquot champagne bucket and a mystery bottle of champagne, the sign of a good night! Good friend Johnny Lynn of Polistas along with Amy Guy (aka Gladiator Siren), Karl Martinez and a whole host of party-goers kept us busy throughout the night and on the dance floor. All in all, it's been a good week and hopefully the start of an exciting year ahead.

The road to recovery

Just before lunchtime on Tuesday I had an emergency appointment to have the Pneumovax II vaccine. It contains 23 of the most common types of Streptococcous pneumoniae bacteria, responsible for causing invasive diseases such as the pneumonia that I'm currently suffering from. 

Why is this so significant?

Antibodies help the body recognise and kill foreign organisms. They then remain in the body to protect it against future infections, with the immune system providing different antibodies for different diseases. The vaccine releases small amounts of these 23 strains of bacteria and the immune system is then kicked into action to provide antibodies as a defence against them. These antibodies should then remain in the body and protect it from each of those 23 strains. Hopefully this will help and will mean that I can start to plan things ahead. At the moment even if i plan things a few days in advance, I still can't guarantee that i'll be well enough to go. It's very frustrating.


I had to pop into A&E at the Royal Berkshire Hospital last night (Thursday) as I was finding it very difficult to breathe with the pneumonia pain. I was there for 2 or 3 hours whilst they gave me a nebuliser and helped to relax my chest and open the airways . The nurse looked at me very strangely, she was looking at my grazed knucles. I took the skin off them playing polo and being a bit adventurous with some of my shots up in Scotland with some of the girls from St Andrews and local players. 


I've been sick all night, keeping my mother up. Thank you mummy :) Fingers crossed I will be feeling better today as it's my birthday tomorrow. 

Congratulations Emily

Before I start to update you all with where I am with my health, I thought I'd say a quick thank you to all of the St Andrews University Golf girls and boys, and all of the other sports club members and students who voted for my little sister, Emily, at the recent elections. She is the new St Andrews UniversityAthletic Union President Elect. http://standrewsradio.com/news/1130/meet-your-next-athletic-union-president-emily-griffiths

This is a pic of me at the Golf Ball...I hope I'm well enough to pop up again this year!

Hello

Hi all,


I hope that you are all tucked up in bed (well those in the UK anyway). I, obviously, am not. For the umpteenth night in a row I'm lying in bed, eyes wide open and no chance that I will fall asleep in the next hour or so. 


This evening (Tuesday 20th March), I saw my immunologist to collect and discuss the details of my tests. It has taken over a year to get this far which I was horrified at considering I have had private healthcare ergo shorter waiting times but what I find more disturbing is that it can take 4 years maybe even longer for some people to reach this stage.


I am writing this to make conversations that much easier for everyone and also to let you all know how I am without you having to ask questions that you may find difficult. It may also help to explain how/why I've slipped under the radar...unfortunately I have not been seconded to M15 on a secret mission as someone suggested.


That's all for now folks. Shortly, or more accurately when I can pluck up the courage, I will explain what I learnt tonight at the hospital.


x