Surgery Update.

I just wanted to post a quick update on my surgery, as it has been postponed.

I had a period of time before Christmas where my bowel suddenly was ‘working’ where I had an upset stomach and accidents, which was a huge contrast to it entirely not working which is what I’d grown used to. My gastro consultant knew this was the case, in addition to me vomiting, yet only last week she has emailed saying that before I have my ileostomy I need to have a colonoscopy and an MRI to check for any other abnormalities which could have caused those symptoms as it was a cause for concern.

The tests have been requested urgently, and we are yet to know whether they will be done as an inpatient or outpatient; we will just go with whatever will be quickest. At the moment there are a lot of unknowns and I hate not knowing when things will be, but hopefully it’ll all fall in to place and work out for the best.

Pre-Operative Assessment.

Today was the day of my Pre-Op Assessment, the biggest appointment building up to my ileostomy.It started by having an ECG, followed by seeing a lovely staff nurse. He went through the standard Pre-Op Assessment booklet with me which is a lengthy questionnaire for any patient, let alone me with the added complexity of my health problems. He took down information relating to my health problems, the medication I was on and previous procedures/surgeries I’ve had, and as I’ve been told way more than I’d like, was told again how much of a risk the surgery will be. The fact that last years general anaesthetic for my bladder procedure that meant a day case turned into a three month admission was a huge concern; looking at my records, I was in type one respiratory failure and lucky to come out the other side of it, and because of this I then had to see the consultant anaesthetist. I was in with the nurse for around an hour and we had run out of time before we even managed to get a summary of everything down.

The consultant anaesthetist outlined the risks to my Mum and I and to say it was petrifying would be an understatement. However, despite this, she was so understanding of the necessity of the operation and drew up a plan of what we can put in place to minimise risk.

Firstly, rather than come in the morning of the operation as was originally planned, I’m going to be admitted the night before to get my port-a-cath accessed and given IV fluids overnight to ensure I’m as hydrated as possible. I’m also going to have extensive monitoring throughout, including probes under my skin into my wrist for blood gas monitoring so any abnormalities can be detected before things spiral out of control as they did previously, and I’ll have an ITU bed to go to afterwards. It was explained how, given my chronic pain condition, acute pain from the operation will be difficult to get under control; due to the ineffectiveness of local anaesthetics in EDS patients our possibilities are limited, although an epidural may be an option.

It was so lovely to speak to a consultant who understood that I have a life beyond my health problems, that risks have to be taken (although obviously minimised wherever possible), and that I need to get back to my place at Cambridge.

After speaking to the anaesthetist, I was sent for extensive blood tests where, much to my surprise and delight, a phlebotomist using the smallest butterfly needle manufactured managed to get blood… Woohoo!

Before we were able to leave, we had to go up to the medical and surgical gastroenterology ward to talk with the Enhanced Recovery Nurse (ERN) and stoma nurses. There had been a mix up with appointment times and so the stoma nurses weren’t available, but the ERN gave me ‘Ensure’ drinks of which I am to have one a day for four days before the operations, and then three the day before; I also have ‘Pre-Op drinks for the morning of the operation. Very frustratingly, I have to go back next Tuesday to see the stoma nurses and to have a longer chat with the ERN, but I feel it is important to feel fully informed before such a major operation and change to my life.

The appointment today was necessary and productive in moving forwards towards the operation, but to be honest, I’m petrified. I have twenty days to go; twenty days of being ‘bagless’, before the risk of the operation, before the stress to my body and before a difficult admission. Of course there is the chance of a bed crisis and my operation being cancelled, but either way after today it all seems so real, and the 30th January is looming.

2017.

I find it so hard to write a summary post about a year as I’m not where I want to be and unfortunately getting there is completely out of my control due to my health issues. I should be in my third year at university and home for the Christmas break, I should be out and about catching up with people whilst I’m home yet I’m no closer to being back in Cambridge, my body has meant more of the past few weeks have been spent in bed than out of it and I’m sick to death of illness dictating my life.

However hard I find it, I’ve got to cling to the positives or I wouldn’t have a reason to get up in the mornings. Firstly, despite having to spend more time than I’d like at home, I’ve had the company of Jeffrey. As most of you know, Jeffrey is my hugely loved (very spoilt) Maltipoo who keeps me sane through the difficult days. Jeffrey also gave me a reason to leave the house when I had very little purpose, getting me out to puppy training (no matter how embarrassing he made it) where I was fortunate to make some really good friends. 2017 also saw me having to say goodbye to my much loved Fiat 500 but saw a good replacement with ‘Mervin’ my Mercedes A Class. I’d saved for my dream car, my Fiat, since I had a Saturday job at 16, but as my deteriorating health meant I have to rely increasingly more on a wheelchair, I had to look for something more practical. I use the term ‘more practical’ loosely as I know there were many more larger cars out there that would have suited my needs greater, but after losing so much to illness I needed something positive in my life.

I was also fortunate enough to have a visit from a teacher from Townley, my secondary school, this year as the senior leadership team had heard I was poorly. Mrs Pandya came around bearing flowers and cards, and with the kind offer that I could go and volunteer my time back at Townley to give me a purpose to leave the house when I felt like I had nothing left. This was most definitely one of the highlights of 2017 as, school had been part of my life for seven years, extending beyond academia as I was fortunate enough to be a deputy head girl for my final year. I was lucky whilst at school to have ultimately got where I’d dreamed of, to Cambridge, and since having to intermit felt a failure but the endearing words of both Mrs Pandya and Mr Deehan eliminated this worry and simply instilled their faith in me that I would get back there.

The other highlight of my year has been meeting Thea; those of you who follow me on social media will know that Thea also has EDS and it was seeing her on the news after being able to walk down the aisle on her wedding day due to state of the art knee braces that I got into contact with her and it’s like we’ve been friends for years.

Thea is the most beautiful person I know, on both the inside and out, and despite facing her own health problems, continues to give me strength throughout the most difficult times. Due to us both using wheelchairs the logistics of getting out together are not always straight forward, but somehow we make it work and I couldn’t imagine my life without you in it Thea.

I’m also so grateful for my parents and Laura for being there despite the difficulties, and for Jack not leaving my side. Things are far from easy, and I’d give anything to be able to do ‘normal’ things, but to be surrounded by people who love me none the less is extremely reassuring. I also went on a lovely break to Pevensey with Jack and his family for a week where we made such lovely memories and the break from ‘normality’ was so needed.

September saw Laura run the Great North Run for Crohns and Colitis UK and we had a lovely mini break in Newcastle to support her. I can’t express my pride for Laura and to see her do something such as she did for a charity so close to my heart was touching. My Mum and I also spent a weekend at the start of October in Warwick at the first EDS/HMSA conference. We learnt a fair bit about the multi-systemic manifestations of EDS that I live with on a daily basis and felt better informed about the condition and up and coming treatments.

With the overwhelming theme of illness in my life, it’s so easy to forget the good times and the people who have been there in the good and bad, and so I also need to say a huge thank you to Deborah. My 2017 was a much better place for you volunteering your one day off a week to get me out of the house and to an Aquafit class which I wouldn’t have had the confidence to do without you, and I’ve now made a lifelong friend in you. Also thank you to Sophie for putting up with me since secondary school and despite not seeing each other so often now, when we do see each other it feels like nothing has changed no matter how long it’s been.

I’m also extremely grateful for Sara for being there and being the greatest support I could ever wish for. Also to Kate for the puppy play dates, arty afternoons and for keeping me sane despite all has been going on with the hospitals. My Mum’s friends have also been amazing, visiting me in hospital but much more importantly than anything in supporting my Mum who’s been forced through this difficult path with me, and I’m eternally grateful to you all for keeping my Mum, my greatest support, sane.

November saw my 21st birthday where I was spoilt by so many people and made memories that I’ll treasure for a lifetime. My family took me to Harry Potter World, to The Delaunay for Brunch and we had a box to see Aladdin. They also organised a surprise afternoon tea where so many family and friends had come to celebrate with us. Thea treated me to Afternoon Tea at The Ritz as well as gorgeous presents; I was just so grateful to have got through my celebrations without any major health hiccups.

Of course this wouldn’t be my blog if my health problems weren’t mentioned, and whilst I’ve chosen to highlight the positive parts of the year, it hasn’t gone without health difficulties. I had two admissions; one in March where I was admitted to DVH for a week due to my bowel not working, and a second in May in Medway Hospital for Glandular Fever which caused my airway to collapse.

I’ve also had two port-a-cath revisions and finally, with my third port of the year, although temperamental, seem to finally have one that works sufficiently to get the necessary bloods from it. 2017 also saw the rise of a Potassium deficiency which dropped so low I was at risk of a cardiac arrest and had to go straight to A&E. I was also put on various lists for ileostomy surgery, for which I finally have the date of 30th Jan after which I’ll be admitted for 3/4 weeks to try and stabilise things.

Unfortunately, dealing with my ill health doesn’t get any easier, but as difficult as it is I have to draw the positives from it. The strength I’ve found as a result of it, the friendships I’ve made and the resilience I’ve built are skills I wouldn’t otherwise have. I appreciate the little things in life so much more, I’ve learnt to make the most of the good days and always look on the bright side; no matter how hard it can be to find at times there always is one.

I will get back to Cambridge for Michaelmas 2018, I’ll continue to take my health in my stride and face each day with an open mind; getting back to uni with the use of wheelchairs and need for carers is better than not getting back at all. I say it time and time again, but I truly am grateful for the support, messages, visits, shoulders to cry on and constant open ears for my rants;I wouldn’t cope without you all and I’m eternally grateful for you all in my life.

Thank you all for your support, and I wish you all a happy, healthy 2018.❤️

I need a break.

Whenever I think things can’t get any worse, my body seems to take it as a challenge and manages to outdo itself.

For months now I have really struggled with my POTS as you’re probably all sick to death of me blogging about… I am fainting multiple times a day resulting in further problems such as dislocations. After exhausting the maximum dose of a lot of the ‘first line’ treatments, my consultant is still trying to start Octreotide injections, but the support needed to do so is taking longer to put in place than we anticipated and so we haven’t been able to start this medication yet.

I woke up on Thursday last week and felt quite faint which isn’t out of the ordinary, but ended up being very very sick. I have been sick previously with my POTS, but I’m not convinced that it was the cause this time… one of the biggest difficulties with a body that doesn’t work is trying to work out what symptoms are caused by what. Thursday ended up being an extremely draining day where I was unable to keep any food down, and for the best part of the day any drink either. I take numerous tablets a day for various aspects of my EDS, POTS and Crohn’s Disease so being sick always makes me concerned that other things will flare up when I’m not getting my meds down. Out of all my daily tablets I picked out the anti-emetics, as I couldn’t face trying to get everything down, and ironically no sooner had I taken them as I was bringing them straight back up.

I phoned the GP for help as in the past have been allowed my anti sickness medications intravenously when struggling with gastro symptoms due to the importance of a lot of my medications, in particular hydrocortisone due to adrenal insufficiency and the potassium I take due to a deficiency. I was unfortunate as my GP wasn’t working, and the ‘duty’ doctor can be notoriously unhelpful, telling me that he wasn’t prepared to change my ‘medication plan’ and that I should go to A&E to be admitted locally. Whilst we’ve been struggling at home, being in hospital particularly at this time of year is so depressing, and when, as I’ve so often experienced, I’m admitted for say a fortnight and discharged not very much better off it makes me have such little faith in what they’d actually do for me. After Thursday, although I haven’t been eating I’ve managed to keep fluids down which has been the main thing, and have spent the majority of the time sleeping. I don’t even feel hungry and whilst I’m able to drink I’m just trying to rest up which is what my body seems to need.

On Friday I had my gastro consultant at UCLH who is really my ‘main’ consultant and I have waited for months to see and we have concluded that I need to be admitted to repeat a few of the (vile) gastro tests, for my consultants to get their heads together and to see where we go from here with medications and surgeries to make my life as good as possible. I find hospital admissions SO difficult to cope with, but I also can’t continue with the way things are and so I’ve just got to go with it and hope it’ll be worth it in the long run.

I was asked if, if a bed were to become available before Christmas, would I take it? The truth is I would, I’d do anything for a better spell with my health, but realistically as the tests aren’t being done as an emergency, would anything really be done over the Christmas period or would it be days spent on a ward with nothing being done when I could at least be in the comfort of my own home with my family? The consultant entirely understood my point and so it’s looking like the admission will be in January, although there are no guarantees with the current struggle for beds and acute emergencies understandably taking priority.

It’s not going to be easy; it’ll be 2-3 weeks of gruelling tests whilst being admitted in a hospital not local to home, but I’ve just got to hope it’ll be worth it.

My Twenty-First.

It felt natural that this next post should be about my twenty first birthday as it was made so special and I’m so grateful for my friends and family who made it that way.

I had three days of surprises with my family; the first (Friday 3rd November) being my parents and I spending a day at the Warner Brothers, Making of Harry Potter studios. I’ve been wanting to go for ages and it was lovely to finally get there – I have enjoyed the Harry Potter books and films and there was so much to see on the tour and so many ‘behind the scenes’ facts that were so interesting to know about.

The following day my family and I went for brunch at The Delaunay; the food was beautiful, the service could not be faulted and it was such a wonderful experience. We then went on to see the matinee performance of Aladdin – I love musical theatre and spent a lot of my younger years at Italia Conte so the surprise of a theatre trip was such a treat! Even more so when I found out we were watching the show from a box (loge) which was accessible so I could get in without too much of a fuss in my wheelchair.

On Sunday 5th, my parents told me that we would have to leave the house at 5pm so I had the first part of the day to laze around in my pyjamas. As much as I was enjoying the celebrations (and really didn’t want them to end), having lots going on exhausts me and so I had a bit of a chance to recuperate. Laura and my Mum had left the house with Jeffrey, saying they were taking him to the lady who often looks after him, and a while after my Dad took me out in my wheelchair walking into Bexley Village and so I thought we were going for dinner somewhere.

We got to a eatery for what I then found out was for afternoon tea, and there was my Mum, Laura, Jeffrey, my Nan, Jack and many other friends, neighbours and family all there to surprise me, and surprise me they most certainly did. It was the last thing I expected, and I burst into tears. Things have not been easy for us, but these are people who have stuck by us through the difficult times and I was so humbled that they made the effort to come and celebrate with us. I had such a wonderful evening and made memories that will last a lifetime. My Mum had thought of absolutely everything, and it was perfect, absolutely perfect.

My birthday started with a district nurse visit for bloods and to flush and hep-lock my port-a-cath… Chronic illness doesn’t stop, not even for 21st birthdays! My Mum and I had a day in, and had lots of lovely visitors. A nurse who has been helping me sort areas of my care popped in with flowers which really touched me. Katie kindly came up from Brighton with beautiful presents and it was so lovely to have a chance to catch up. Other people popped in and out throughout the day and I was made to feel so special.

Jack came round after work in the evening to stay, I had my pressies from him and we had a take away.

The following day I spent a day with Thea at her flat which was lovely and we had our own celebrations.

One of my gifts from Thea was afternoon tea at The Ritz which was such an amazing experience… I truly have been so spoilt!

I had the chance to briefly catch up with Sophie (my friend from school) and received such beautiful gifts from her and her family too. I’m so grateful for all of my cards and presents, but on top of that it was so lovely to have a special occasion to bring family and friends together, and to be able to catch up with all the people who are so important in my life.

I’ve had THE most amazing birthday, so much more special than I ever believed possible, and from the bottom of my heart I am truly grateful for the people who made it that way.

Goodbye 20.

As I turn 21 tomorrow, I’m hoping for a ‘fresh’ start and a probably unrealistic turn in my luck, so I felt it appropriate to bring you all up to date on my health – as we don’t want to still be here at Christmas, I’ll keep it brief!

One of the most significant additions has been a currently unexplained Potassium deficiency; for those of you who don’t know, a normal Potassium range is from 3.5-5.0 mEq/l. I had a phone call from my GP after a routine blood test to say that mine had dropped to 2.8 mEq/l and so supplementation had to be put into place. A week later I had my bloods repeated, and thought nothing of them, until at 03.45am the following morning, our house phone rang and it was the path lab at Queen Elizabeth Hospital; they’d been processing my blood sample, and it had come back showing that my Potassium had now dropped to <1.2 mEq/l which is a critical level, I was at risk of a cardiac arrest and I was to be rushed into A&E.

My levels were ‘stabilised’ to a level which allowed me to return home, which had to be sooner than the doctors wanted as they couldn’t get blood from anywhere (foot, wrist, arm, groin etc) and there was no one in the entirety of A&E able to access my port-a-cath, and so we had to rely on the district nurses coming home every two days for bloods, and adjusting my dose of oral Potassium from there. This is still what we are doing at the moment, but there is currently absolutely no explanation as to why this problem has arisen. It could be due to my inability to absorb, although it seemed to come on too quickly for that.

In addition to this, over the past few weeks there has been a severe deterioration in my POTS. I can’t even always transfer without passing out, and with the maximum dose of a lot of the treatments tried (Midodrine, Ivabradine, Bisoprolol, Pyridostigmine, Fludrocortisone etc) we are beginning to exhaust our options. There is the possibility of starting Octreotide which is an injection 2-3 times a day, but it has gastro side effects and with my bowel already failing to work, my teams are still trying to weigh up whether or not this is a viable option.

Considering the complexity of my health conditions and the multi systemic nature of them, UCLH have decided that the only real option is for me to have a planned admission to get the various health professionals together and try to stabilise things as much as possible. To begin with, I’ll be admitted for a minimum of a fortnight and we will go from there as to whether it’ll be longer and what procedures/operations (such as the siting of a PEG) need to be carried out. The whole situation is far from ideal, but realistically there isn’t a choice as we can’t carry on with how things are at the moment. I hate admissions as it is, and the hospital environment is one I find extremely hard to cope with, but I am holding on to the fact that it should be worth it in the long run.

Despite it being my 21st Birthday tomorrow, I still have district nurses etc coming as, with chronic illness, there is never a day off even as much as I’d like there to be. However, my family and friends who have been there for me through the good and the bad times have done everything in their power to make it special, and for them I am eternally grateful.

EDS UK/ HMSA Conference

This weekend, my Mum and I went to Warwick to attend the joint conference by EDS UK/ HMSA titled ‘Management and Wellbeing’. We decided to purchase tickets to be able to listen to the various speakers, gain a deeper understanding of the illness and management options for it, in addition to meeting and learning from likeminded people. It also meant a weekend away to look forward to, getting out of the four walls that have become so familiar and it has been a weekend I could spend with my best friend since we no longer see each other very often after both being reliant on wheelchairs due to the condition.

The conference was spread over two days, and so I decided to split my blog post up into the two sections.

Day one;

The first day started early, with registration at 0830 and talks commencing from 1000. To avoid an excessively early morning and a stressful drive with needing to get here on time, my Mum and I stayed the night before locally. We registered, and had a look around the different information stalls; there were many organisations represented, including EDS UK, HMSA, Mast Cell Activation Syndrome and Stickman Communications. My Mum and I met up with Katie and her family, before going into the main room in which the majority of the talks were to take place.

The mornings talks were commenced by Dr Kazkaz who gave an overview of the new classification of EDS. The rest of the mornings talks focused on PoTS, Mast Cell Activation Disorder and the importance of nutrition within the conditions. After a break for lunch, the afternoon provided talks on swallowing and voice, there was a talk by an Occupational Therapist and finally a Mindfulness talk concluded the first day. In addition to the main talks, there were also ‘breakout’ sessions provided; My Mum and I didn’t attend any of these as we had an interest in all the main medical talks and obviously could only go to either one or the other.

There was a huge amount of information to take on board, from the combination of the talks, information stands, leaflets, health professionals and fellow patients. This, in a combination with the travelling yesterday, the early start and generally having chronic illnesses left me absolutely exhausted! We had a conference dinner, soon after which my Mum and I went up to bed, as we were in desperate need of sleep before the second day.

Day two;

The second day began with my Mum and I having breakfast, before heading back into the conference room where we met Katie ready for the mornings talks. These included one from a urology consultant I am under the care of, a talk from a GP who is also an EDS sufferer and a talk by psychologists based on managing pain and fatigue: The combination of talks which were from numerous different angles was so effective as there was a bridge between us as patients and the healthcare professionals whom we so heavily rely on.

As the conference broke for lunch, after a few final visits to the information stands, my Mum and I left. There was one more talk this afternoon, but in order to pace my day (which is a technique so frequently mentioned during the conference), we headed home as we still had a two and a half hour journey ahead of us.

The conference was such an informative weekend, giving us tools to cope with the debilitating impact of Ehlers-Danlos Syndrome, whilst also providing hope for future management options. I’m so very grateful for my Mum having no boundaries to what we do to try and improve my quality of life, and for Katie who sticks by my side no matter what, and makes my life with this horrific illness so much more worth living.

University.

As I see my friends returning for their third year of university and pupils I mentored at school become freshers, I felt the need to write a blog post with a heavy heart about my need to extend my intermission.

As most of you know, I completed my first year of university at Cambridge during the academic year of 2015-16; I then had to take the following year out due to a deterioration in my health, and since I’m still trying to stabilise my health and awaiting operations, I also have to take this coming year out with a view to return in October 2018. The decision to intermit both times was not really a decision and was taken out of my hands – the first time because I was in the middle of a three month hospital admission relying on IV drugs etc, and this coming year due to needing operations before I’m stable enough to continue my degree.

I can’t even begin to put into words how difficult this has been to come to terms with, and still now I don’t think I have. I see people returning to uni on various social media sites, and whilst I don’t begrudge people for what they have, I can’t help but think that it should also be me. I can’t help but scroll through with a lump in my throat and tears in my eyes. I have never worked as hard as I did for my A-Level results to get into Cambridge, it was the place I’d always aspired to get to and I just want to live my dream. I shouldn’t have a life ruled by my broken body, but instead should be back getting my degree; I would do anything to have this bit of normality back in my life again.

In addition to missing out on getting my degree, I’ve also lost my year group who have moved on, I’m losing out on having the experience of living independently and ultimately missing out generally on the entirety of my university life.

I don’t want this post to come across as selfish, and if it does it has been misinterpreted as that was completely not my intention. Of course there are people worse off than me, in more challenging situations, but it doesn’t take away from the problems I’m facing myself and my absolutely burning desire to be back at Cambridge; all the barriers preventing me from returning are so frustratingly out of my control.

It goes without saying that I’ll go through this year, have my operations, do my utmost to adapt to my new ‘normality’ and prepare as thoroughly as I can for my return for Michaelmas term 2018. I have to believe I will get back there as it’s the only thing keeping me going, the only thing worth fighting for. I have to have faith that I will make friends in my new year group, I will get my degree and ultimately I’ll be able to live my dream.

Always look on the bright side of life.

I felt it time for an update (AKA ramble!) on my blog of what has been going recently – I’ve had another few weeks full of hospital appointments, physio, hydro etc. you know… the average wild life of a twenty year old.

As a result of being on such high doses of Prednisolone for long periods of time, I have adrenal insufficiency where basically my adrenal glands have become lazy as they’ve been used to Pred providing the necessary cortisol for so long. Last Monday I had a short synacthen test to see if my adrenal function has improved. If it hasn’t, I’ll be swapped from Prednisolone to Hydrocortisone and stay on that long term. If it has improved, I’ll be able to very slowly wean down (and hopefully eventually off) of steroids, but I have to wait for a telephone consultation at the end of next week to get the results and find out the plan going forward.

I also had a repeat video fluoroscopy which I just yesterday got the report of; the test is so vile and due to my bowel not working they couldn’t use barium, and so had to use Omnipaque which was so bitter! The report showed a moderate reduction in my swallow function, with some aspiration. I’m waiting for my SALT to come round in the next couple of weeks to see if anything else can be done to help me, if there are any other interventions such as my current use of thickener or if they will proceed with a PEG. Whilst there can be swallowing issues in EDS, there have been suspicions of me having MS in addition due to the nature of my problems, but I’m not able to cope with having tests for that at the moment on top of everything else so will just be something I’ll keep in the back of my mind.

I finally have positive port news, as my new port seems to be working – third time lucky! I have my bloods taken from it, can have IVs through it as I did for my short synacthen test, and I hope it’ll continue working and make my life slightly easier.

My bladder problems have been worsening; intermittent self catheterising was do-able, but now, no matter how often I catheterise, my bladder leaks in between. I have to use incontinence pads to deal with it but at 20 years old I find the situation devastating. I had waited for a urology appointment for months that was yesterday, but I got there and there was a mix up meaning the clinic should have been cancelled as the consultant wasn’t available. I had to sit and wait for around 4 hours, and was squeezed into the registrars clinic; it was a bit of a waste of time as I needed to see my consultant considering the severity and complexity of my history, so I’m hoping I’ll be squeezed into a clinic on 10th October, but I was told that they will consider Sacral Nerve Stimulation. If I am eligible, there will be a trial phase and my symptom improvement will be evaluated, although there is a concern of the wires migrating due to the nature of my connective tissue disorder. I’m not getting my hopes up and will wait to see what my consultant says, but if not a Supra-Pubic Catheter or a Urostomy will be considered.

I am still waiting to hear for a date for my ileostomy but I’m hoping if both operations go ahead and are successful, they will help stabilise things and give me a new ‘normality’ to adapt to.

I thought I’d end my post on a positive note (I know… it’s unlike me!) but we have to appreciate the good things in life. I was absolutely BURSTING with pride this weekend as my sister, Laura, completed the Great North Run. There was some complications with running it for EDS, so instead my sister did it for Crohn’s and Colitis UK, another charity that is very close to our hearts. Raising over £500 and being motivated herself to train for it, Laura completed the run and I could not be prouder.

Port Problems are Persisting…

As you know, I went to UCLH yesterday to have my new port, which has only been sited for three weeks, looked at. The district nurses were struggling to flush it and couldn’t aspirate from it at all, and so knew something was wrong.

I went to the imaging department yesterday who did a chest X-Ray which showed the tip of the catheter attached to my port right in the apex of my heart. In the short while it had been sited, due to the defective tissue as a result of my EDS, the port had migrated and so when we tried to aspirate, it was simply suctioning to the bottom of my heart. As a result of the findings, the consultant decided he would have to entirely remove the port, and site yet another new one.

The procedure that I was just recovering from since having it done a few weeks ago had to be repeated, and this news was devastating. It’s not the biggest of operations, but it’s not without risk and, for me, healing is very slow and there are now another three incisions for me to dress and hopefully prevent from becoming infected.

With the nature of EDS in mind, the surgeon has sited this port in the middle of two pieces of scar tissue, hoping that it’ll hold better there and so function. Today I’m having a PJ day as I’m having to deal with the recovery process again and I’m exhausted from being up in the night with pain, but without the support of my family and bestest friend I could ever wish for I would have given up a long time ago.❤️