So glad to see this bish here. Might prove worth her own thread if she carries on at this rate. Absolutely shameless bullshit from her and her mum. A touch of by proxy in the mix and a dash of grifting. And she's a rich white girl because of course she is.
Spina bifida is more of a spectrum of ability than people think. And it's got fuck all to do with needing toobs. She's incontinent bascially with slightly gimpy legs but incontinent isn't cool and Instagrammable.
And if you were worried about not ending up in a wheelchair there are lots of ways for disabled people to safely enjoy equestrianism. Showjumping if your spinal nerves are seriously compromised sounds like insanity to me.
Wow I had to give up horseback riding when I was crippled. Nevermind how I'd get on the damned thing now but I know the risk far outweighs the reward. She's out of her God damn mind, this is worse than Evel Knievel jumping the Grand Canyon in terms of personal injury risk.
The doctors of reddit are livid about this case. And you don't have to scroll far to find them calling her out as part of the eating disorder munchausen EDS feeding toob industrial complex they're now having to deal with.
Evie Toombes, 20, was born with a lipomyelomeningocele, a rare type of spina bifida that is not prevented by folic acid supplementation. Somehow, Miss Toombes has managed to make this the central argument; not that the advice to take folic acid would have prevented her illness but that her mother would have held off conceiving and made an entirely genetically different person.
So was the doctor negligent in his advice? It turns out that he had advised it, and his recommendation was indeed documented in the notes. But Evie's legal team argued that the recommendation was not stressed enough, with her mother "wouldn't have attempted to become pregnant until she was satisfied that she had protected herself as much as possible," meaning that Evie would not have lost the genetic lottery and exist but instead some hypothetical brother or sister who would have been healthy.
The judge's comments on the credibility of the claimant and the lack thereof of the GP is wacky. Of course the doctor can't remember exactly what he said 20 years ago in a ten minute appointment. Never mind the possibility that Mrs Toombes could be being fraudulent - not accepted in Mrs Justice Lambert's eyes. This girl is winning millions on the judge accepting "he said" over actual documentation of the consultation and a weird hypothetical that if her parents had sex a few seconds later their child not-Evie would have been healthy.
Evie's won her case and is planning to sue for millions, for the costs of being disabled her whole life. So, what do these big costs involve? Evie is a British woman who has been entitled to the National Health Service since birth. Oh wait, she is a showjumper looking to go to the Paralympics. It's harder to ride a horse when you can't feel your legs, she says - any added costs to this? Horses are an expensive hobbie.
She can stand on them and mobilise, but there is some weakness and mobility difficulty. Apparently argued in court that she would eventually need a wheelchair. Bladder and bowel incontinence. No doubt there are some real neurological issues. But there are photos of her walking unaided and squatting down on her own instagram. I wonder if the judge saw these.
What a surprise, her instagram is a sickstagram. Horse picture, horse picture, TPN, horse picture...wait, what? What's the TPN for?
"I rely on tubes to stay alive every single day." Somehow the bowel issues mean that she requires TPN...and also an NG tube as well as oral intake. The Hickman line has been in place since July, so this is a new issue. I wonder where this has come from, all of a sudden? Evie has been on some television programmes about hidden disability and even met Meghan and Harry!
See below for a small selection of her health antics. I will come back and add the rest for archival purposes at some point. I hope her case gets thrown out at the court of appeals. It has implications for every healthcare professional ever. What next, "I held off having a baby until I was forty and now he has Down's Syndrome, if you had advised me of this risk I would have conceived a whole genetically different individual a few years earlier"?
Absolutely shameless bullshit from her and her mum. A touch of by proxy in the mix and a dash of grifting. And she's a rich white girl because of course she is.
Despite not being the claimant most of the evidence comes from Mrs Toombes' account
Comments of Mrs Toombes by the judge consider her "very careful and measured in her evidence" and accepted that her claim had evolved over time. The judge also comments on Evie being a remarkable young woman so I suspect this judge was not unaffected by the Toombes' superficial charm.
Mrs Toombes "lost both parents at a young age" so on the balance of probability she is not entirely mentally healthy.
Mrs Toombes has been fighting this legal battle since 2006. Consider, perhaps, the effect on a child's psyche growing up being told that she should never had existed and should have been a "genetically different sibling".
I hadn't considered this, but looking through the legal stuff I think you are right on there being an element of by-proxy. The evidence I've collected from a number of legal sources paints such an interesting perspective of Mrs Toombes that I thought she deserves her own post before I spent more time looking into Evie.
while attending a Valentine's Day dance on 17 February 2001, they discussed trying for a family. Mrs Toombes had been taking the oral contraceptive pill (“the pill”) for several years. Her last menstrual period began on 13 February 2001 and in the normal way she would have started the next packet of contraceptive pills on 18 February 2001 but she did not do so.
It was the Defendant’s primary argument that Mrs Toombes was likely already pregnant at the time she saw Dr M. The Claimant was born around 40 weeks after the consultation. The only evidence in support of Mrs Toombes’ contention that she was not already pregnant was her and her husband’s evidence that they did not have sexual intercourse from the date she stopped taking the pill on 11 February 2001 until after the consultation with Dr M on 27 February 2021.
Legal documents say 27th (according to Dr M's lawyers, 21st, but this may be a mistake) Caroline Toombes consults her doctor Philip Mitchell from Hawthorn Medical Practice in Skegness, Lincolnshire. There are two surgeries in the practice: Hawthorn in a Skegness industrial estate; and ten minutes down the road in the much nicer, more rural Burgh Le Marsh, is a surgery that joined the group in January 2001. As we will come to see more of, the Toombes obtain a few horses which suggests they have a lot of money and a lot of land to keep them on. I think it's safe to assume they are locals of the quainter Burgh Le Marsh and not Skegvegas.
During trial Dr Mitchell admitted it was unusual for someone to see their doctor for planning for a baby. The judge took this into account and determined Caroline was careful; I've taken this into account and determined that she is neurotic. At the appointment Dr Mitchell documents "Preconception counselling. adv. [advised] Folate if desired discussed". Of course, this was twenty years ago and he can't remember the consultation let alone what was said, but here's what he said in court:
He told the judge that Dr Mitchell claimed to have given 'reasonable advice' about the desirability of folic acid supplements being taken.
It was his usual practice to tell prospective parents that 400 micrograms should be taken by those preparing for pregnancy and all through their first trimester once pregnant.
He said he would have said that if the mother had a good diet and so good folic acid levels anyway, supplements would be less important, but denied saying they were not necessary.
It was accepted that Dr M had no recollection of the consultation and was therefore entirely reliant on his usual practice and his note which read: “Preconception counselling. adv. Folate if desired discussed”. The Judge did not accept Dr M’s evidence that, in accordance with his usual practice, he advised a 400 µg supplement for women preparing for pregnancy and in the first trimester. He would additionally advise that if a patient had very good folic acid intake from their normal diet, then the benefit of supplementation would be less important although the dietary intake of folic acid would need to be very good in order to avoid the need for the 400 µg supplement. The Judge found that Dr M was attempting to reconstruct a conversation/consultation on the basis of an “inadequate note” which required him to speculate or make assumptions about what was said.
At this point I want to pause and introduce you to the Bolam principle. The Bolam Test is used in British law to determine clinical negligence. It essentially states that if a doctor reaches the standard of a responsible body of medical opinion, he is not negligent. It would also be important to know what the common practice at the time was, as if he did the same thing most doctors were doing, whether they were doing the right or the wrong thing, he would not be considered negligent.
'This was a very precious decision to start a family, because she herself had lost her parents when she was young,' Mrs Rodway told the judge.
'They had been refraining from sexual intercourse until after they had received advice at this consultation.'
But despite discussing folic acid during the consultation, Mrs Toombes claimed that she was not told by Dr Mitchell of its importance in spina bifida prevention.
She told the judge that the doctor had told her to go home and have 'lots of sex', which she found 'somewhat blunt.'
'He told me it was not necessary,' she told the judge. 'I was advised that if I had a good diet previously, I would not have to take folic acid.'
Mrs Toombes says that she could have become pregnant at any time after the consultation with the defendant on 27 February but could not have been pregnant before because between her last menstrual period and the consultation, she and Mr Toombes had had no sexual intercourse. She was absolutely adamant on this point. She said it was not possible because there had been no sexual intercourse. When asked about the use of the phrase “unprotected sexual intercourse” in some of the correspondence and pleadings, Mrs Toombes again was clear that she and her husband have never used a condom or other barrier form of contraception and that if she was not taking the pill, the only form of "unprotected" sex would be no sex, and that that was the choice: either sex if she was taking the pill or no sex.
She was worried about skiing during pregnancy. Also, her midwife and pregnant sister-in-law told her to take folic acid and she bought them "immediately."
The very reason that she made the pre-conception consultation appointment was in order to find out everything that she was recommended to do to ensure a healthy baby. She said that she stopped drinking alcohol and cut down her caffeine intake. Although she did not want to go on a pre-booked skiing holiday because she had discovered that she was pregnant (confirmed on 15 March 2001 p.14), she did go, but did not drink alcohol or ski. She saw a midwife on 25 March 2001 and was advised to take folic acid supplements and did so immediately that was recommended. This coincided with her sister-in-law who was also pregnant, telling her that she had been advised to take folic acid
The document at p.219, which reads "Current medication Folic acid" is, as I find clearly a document which was being updated. There are entries on it for dates between 30 March 2001 and 29 October 2001, and I find on the balance of probabilities that either the “Folic acid" entry was an updated entry, like many of the others following the initial booking in on 25 of March 2001 (p.187), or follows on from the advice which was given about folic acid and which is recorded and signed by Midwife Flatters, (p.220), because Mrs Toombes indicated that she would start taking folic acid immediately. I find that that is what Mrs Toombes did. It is apparent that these pages form part of a booklet which is an ongoing record throughout the course of the pregnancy
19th November 2001: Evie is born.
Born exactly 40 weeks from Caroline's last monthly period, one day before the due date of 20th November
Born 38 weeks 6 days from the early consultation date given by Dr Mitchell's lawyers
Born 38 weeks exactly from the later date of the consultation given to the court
Dr Mitchell's lawyers argue that Mrs Toombes could have already been pregnant. Either way, this is all based on Mrs Toombes telling the truth.
Her spina bifida, a lipomyelomeningocoele, was not picked up in antenatal scanning because it is a closed spina bifida that is generally less severe than the open types that are visible on scans. Note that lipomyelomeningocoeles are not associated with folic acid deficiency. According to Evie's social media she was diagnosed at age one. On 4th March 2003 aged 16 months she has an operation for spinal cord untethering.
Then Evie's mum, starting to think about having a second child, is thumbing through some parenting books at the bookshop.
She told me that when the claimant was about a year old, she was in W.H. Smith's looking at a book and saw that folic acid is recommended to be taken pre-conception as well as in the first 12 weeks of pregnancy. She was so shocked to come across that recommendation that she should have taken folic acid before conceiving that she told me that she telephoned her husband straightaway.
Oh dear. Now she's upset.
Mrs Toombes’ records make it clear that following genetic counselling before becoming pregnant for the second time she took the larger dose of folic acid, pre-pregnancy (from April 2003 to her positive pregnancy test in July 2003) and for the 12 weeks of the first trimester. The records also show that she was concerned that the claimant's neural tube defect should have been picked up antenatally, but it seems she accepted the advice that this would not have been likely given the occult nature of the defect.
At p.162 in the medical records is an entry for 17 April 2003 which indicates that Mrs Toombes was reporting she was "upset as was adv[ised] if had good diet prev[iously] would not need folic acid supplements"
And starts taking a larger dose of folic acid advised to those with a family history of spina bifida. The dates of her starting folic acid, positive pregnancy test are in the court documents. Evie has a younger brother who is healthy.
Dr Mitchell has left the practice at this point.
She referred to her preoccupation with caring for the claimant, particularly at the time that she started school and the time involved in that care as being the reason for her not pursuing litigation more quickly.
It was submitted that her evidence was neither reliable nor credible as it had changed and evolved over the course of the claim (a Letter of Claim was first served in 2006) to try and plug holes in the case. In particular, the Letter of Claim stated that the Claimant was conceived at about the time she saw Dr M. It was only after the Defendant responded to the Letter of Claim that folic acid supplementation would not have avoided the specific type of neural tube defect from which the Claimant suffers, did a new story emerge many years later that Mr and Mrs Toombes would have avoided unprotected sex; they then later asserted that they would have abstained from sex altogether (as contended in their witness statements served only two months in advance of trial). It was therefore submitted that the Claimant’s mother’s evidence could not be relied upon and that this also had a knock-on effect as to the reliability of her evidence as to what was discussed at the consultation with Dr M. The Judge found both Mr and Mrs Toombes to be honest and straightforward witnesses and had no reason to doubt their credibility.
I'm going to stop here because as Evie gets older the focus will shift more to her. Don't worry, Caroline will be back. The more I've researched her the less disdain I have felt for her daughter - I think her mum's behaviour is most certainly a big factor in the person she has become. But if you want more of a feel of the modern Mrs Toombes take a look at her twitter. Also, I edited the format, hope it's nicer to look at.
Re: Mummy Toombes twitter , it seems she made a bid a few months back to get national attention as the daughter hadn't had IV nutrition for 6 weeks due to the pandemic. Dramatic photos of her wasting away and a petition but all dead facebook links now. If she literally wastes away and dies within 6 weeks without the IV then what's the nose hose for? (Willing to bet she can't "tolerate" normal feed rates).
There's literally no explanation. None offered at all for the girl being NPO that I can see. I don't believe for one minute that the NHS just let TPN dependent patients starve during corona. So its PPN not TPN? Makes no sense at all unless it's an eating disorder. Not remotely connected to spina bifida.
Edit to add this screenshot . Hypokalemia. A common symptom of eating disorders. Also note the language of enmeshement: "our lives".
Buckle up for the most ridiculous medicolegal case of the year. Article and court ruling.
Evie Toombes, 20, was born with a lipomyelomeningocele, a rare type of spina bifida that is not prevented by folic acid supplementation. Somehow, Miss Toombes has managed to make this the central argument; not that the advice to take folic acid would have prevented her illness but that her mother would have held off conceiving and made an entirely genetically different person.
Bongland is seriously exceptional and has a pay to play legal system now since legal aid was largely withdrawn. Our courts are overwhelmed and in an absolute state, however this will almost certainly be appealed and I would expect it to be overturned.
A full on fucking wheelchair mermaid outfit complete with medical accessories, oh yeah that’s definitely a munchie.
This might be the best glamour wheelchair picture I’ve seen because the absurdity of it.
They all want to see themselves as special and rare creatures so really it makes sense that someone would take it to the level of dressing like a goddamn mermaid.
The bar is getting raised for the look at me wheelchair pictures.
The only thing missing is her doing a simpsons tier parody of under the sea. Something along the line of they'll be no munchie accusations just mast cell activations under the seaaaaaaa
"I would never encourage this deciscion - which is why I've made 20 videos talking about it, livestreamed me filling out the forms, and provided a list of doctors that will rubber stamp without double checking".
I've got to say she must have been having a really good day when she shot that video. Hair looks washed, makeup applied, plenty of energy. I wish it were ethical to take some videos with people in personal care due to intractible pain so these (and the 10/10 pain people in the er) knew how rediculous they are.
I've spent some time looking into Evie Toombes and she is an interesting one. Certainly not your standard munchie but I quite like the ones that make you think.
The doctors of reddit are livid about this case. And you don't have to scroll far to find them calling her out as part of the eating disorder munchausen EDS feeding toob industrial complex they're now having to deal with.
This is the truest example of "don't bite the hand that feeds you." Way to make every single doctor hate you when your life relies on their intervention weekly. I wonder if there is some sort of protection from interacting with litigious patients. Or being able to pull out from being involved in their treatment because you're afraid of a frivolous lawsuit from missing a step when you got called to an Eviemergency at 4am.
Lol at Gilbert's being a severe chronic illness. Also, you'll see her refer to her spina bifida as a spinal cord injury, which is...well. Since this blog post was created she's had her stoma surgery, switched entirely to TPN and turned twenty.
She is a para horserider. Her mum and brother are also horse people, they own multiple at home. The dad "isn't horsey and sees a horse less than five times per year." They have multiple sponsorships from horse companies and the first half of Evie's Instagram is posting about how good her free riding boots are.
"I am a Para Rider & Hidden Disability Ambassador"
Her motto in life is "Find a way, not an excuse". When she isn't busy riding a horse or getting potassium infusions, she is busy being an inspiration pornstar:
Evie's chronically online saga begins with the blog. Her About page says she started it at age 12 but the oldest post comes from when she is 13 and a half. I'm reluctant to archive stuff from her childhood and I don't get the impression there's a high DFE risk (because of sponsorships, high visibility in the riding world, etc.). But here's a nice summary of her blog posts (it does not make for good reading):
Her earliest posts are about her recent ACE (antegrade continence enema) surgery and learning how to cope with that. Had trouble with eating before then but can eat slightly bigger meals after. Paediatrician still thinks she's too short at 5 foot 2 at age 13. Whilst she should be 5 foot 6 she comments that she probably would have less leg function the taller she was as her spinal cord would be stretched.
She's in and out of hospital for bowel impactions as a younger teen and then as she gets older a myriad of things including needing twice weekly potassium infusions.
At 13 she goes to her primary school to talk to the children about hidden disability. She comes up with the idea with her mum. Her mum helps illustrate and publish "Lucy Goes to School." She does a lot of hidden disability talks.
"I did this by telling the story of a puppy that had no friends – this was because it had a few problems – a poorly leg that meant it wasn't very quick and wee wee problems (so similar to me!)"
Despite having all this time to do horseriding and campaigning her schoolwork takes a battering. It seems she did not have the best time at school. Has a lot of time off school and a 50% timetable eventually. Then she gets barred from returning to sixth form, kicks up a fuss and is let back in despite having three GCSEs.
It was lovely to see my old primary school teacher Mrs Wellstead win Top Teacher award. This lady played a huge part in my final years of primary school , helping me with my core subjects,peeling my fingers off the car door when I was poorly and refused to come into school, making my SATS as easy and stress free as possible.
My carer was not in school and a new teacher(not knowing my medical history) asked me to do pe outside on the coldest of days in just shorts.My legs totally seized up resulting in me spending the remainder of the day in a wheelchair at school as I couldn't walk to lessons.My legs were so painful and shaking.
I was fortunate enough to be enrolled into our local hospital school , a home school where teachers come out to you and teach the core subjects. I'd been admitted to hospital shortly after having my first maths lesson after losing so much weight and struggling to tolerate water , as well as my bladder constantly erupting (leaving me swimming in my very own waterworks) at least 3+ times per day despite catheterising every 2 hours. Later that week I was due another maths lesson , although I was still in hospital mum had seen my on my phone earlier that morning and decided I was well enough to have my maths tutor come and teach me at hospital. After hearing his voice in the corridor and dreading having to find 'x' for 3 hours I did what I call the toddler tantrum. Before my tutor had arrived in my room at the end of the corridor , I ran (and wheeled my feed stand and drip) the nearest bathroom , ripped out my feeding tube and locked the doors before anyone could stop me. - This was the most control I had over anything since being admitted after being tube fed , deprived of food and not allowed out. The last thing I wanted to do was maths.
In 2018 sets up the Evie Toombes Foundation Ltd. to "raise funds towards purchasing, maintaining & running a medical facility/horsebox". She already has nine business contributors, not counting the endless horse company sponsorships. Oh, and because it’s not all about Evie it incorporates her Education.Not.Discrimination campaign for hidden disability.
Gets on TV a few times: The Princess Royal (ITV, broadcast 30 July 2020); ITV Tonight - Hidden Disability: What's the Truth? (ITV, broadcast 5th August 2021). A BBC 3 clip. Meets the Duke and Duchess of Sussex when she wins a WellChild award. Too many newspaper articles about her to count and that was before the legal stuff started. She copies every "good" article about herself to the blog, but interestingly she cuts out her mother's comments about looking after Evie at the end of this one.
"Dodgy blood levels saga"
By 2017 Evie's gastroparesis diagnosis was on paper.
In 2017 she is admitted straight away following a gastro appointment as they are worried about her weight loss
In 2018 rushed by ambulance for a "bowel obstruction that nearly left me in intensive care"
When she is nearly 18 I find the first mention of electrolytes:
After curling up in pain even after strong painkillers yesterday I passed it off as being a rough couple hours, but soon realised it was more abnormal as it progressed. The pain passed but was soon followed by my drainage bag filling up with over a litre of blood stained fluid and was a sure sign something isn't right. Oh dear...a symptom I can no longer pass off to mum as 'it'll be alright in half an hour'- even though I did try desperately to!
In unfamiliar territory (a rarity for me) I called our hospital ward for advice late last night before coming here to be monitored in person. Additionally, the ongoing 'dodgy blood levels saga' as I call it continues, my routine blood test reported my potassium and magnesium levels were extremely low, requiring immediate infusions at hospital
A month before she turns 18, she starts parenteral nutrition. Always calls it PN as opposed to TPN. Looks ghastly skinny and her gastro team is obviously concerned. Says she feels worse in the first few weeks despite everyone telling her she'll feel better on PN. Her team suggest infection, then no follow-up confirming that. Celebrates gaining weight a few weeks later. PICC line comes out and she gets to go home just in time for her eighteenth! Talks about being able to enjoy a hot chocolate at home days after being admitted for parenteral nutrition.
By December she's back in hospital for emergency potassium infusions, looking very skinny but the nose hose is in place. Races to get out of hospital to go to a horse show, falls off it. Mum makes her get back on.
2020 - starts the year off with a bang by making this comment: "since the not so seemingly human right to be healthy has to be fought for tooth and nail with my consultant." Again, don't bite the hand that feeds you.
I had my regular 'Duracell bunny recharge' (as we like to call it) of an 8hour potassium infusion on Friday to keep me going. Still pulling through the side effects and symptoms of the IV drip that really mess with my already weak heart. A few tears from the pain in my chest and dizziness whilst hacking Daisy out on Saturday, but all for a good cause- so I could compete today!
Dastardly Covid ruining all her plans
End of February 2020 she talks about going into hospital for surgery, doesn't say what it's for despite naming all her previous procedures before. "I think the nurses have enjoyed my motto of #FindAWayNotAnExcuse," says Evie.
The legs are deteriorating. She doesn't explain why, just says it's inevitably part of her condition. Spina bifida is not progressive unless there's progressive cord tethering but I think she would have spoken about that if it was the case. Possibly also cauda equina syndrome (I bet the horse girl loves having that one) but I thought that was more of an acute thing. My other thought is her electrolytes being low would cause a lot of cramping and weakness.
Earlier this week I saw my orthopaedic consultant at Nottingham as my legs have been increasingly bad recently, I can go from walking around the garden to curled up in pain (with a few tears and whimpers) in minutes due to the spasms in the muscles. I can only describe it as like someone is slicing knives up and down the backs of my legs. Both me and mum were really hopeful we could find a way to move forward and manage the pain, but during the appointment I was told nothing can be done as put simply- it's the inevitable happening of my legs deteriorating.
It was upsetting in a way, that there was just an acceptance that things are getting worse. I expected some hope and optimism, but in hindsight I know I can't just ignore my diagnosis and condition. We're always looking for ways to improve things and make the most of life, so this matter of fact outlook was such a shock to the system!
I must admit, I do hate having to use the wheelchair more recently, knowing I'll eventually need to use it full time, it feels like giving in to the inevitable that I've been trying to put off. For now I'm planning to focus on the upcoming surgery, and we can readdress my legs at a later date- my main hope is that the pain doesn't get worse in the meantime though.
The big reveal - it's an ileostomy. Goes into hospital early so they can fatten her up for surgery with PN. PICC line placement goes the wrong way and makes an interesting comment about her mum:
We had a bit of an issue placing the line at first as the veins in my arm were 'uncooperative and bouncing around' apparently, which isn't ideal when you already need to be very still. After getting over that initial complication I then felt a huge nerve twinge in my neck and jaw, when feeding the line up my arm it had gone UP my neck instead of across into my chest. It felt like I'd had an electric shock in my neck! It was obvious something wasn't right so they quickly retracted the line and repositioned it with a bit of pushing and pulling whilst I tried to stay stone still on the table under X-Ray, and on the second attempt it was soon in the right place. This is why lines are placed in radiology theatre where X-Ray is readily available to scan the lines position and ensure it is in the right place- i.e. not in my neck.
In hindsights it may be a good job mum wasn't here for the placement this morning as I'd much rather know Daisy is looked after whilst I'm in and I don't think Mum would've appreciated the stress here either! I pulled myself together pretty quick knowing she was only a phone call or car drive away
Covid causes a ward switcharoo. Then her surgery gets postponed. She's worried about her weight and potassium at home. The potassium infusions now become a weekly thing, always an emergency.
I woke up yesterday feeling violently ill, throwing up in the early hours, shaking, feeling overall numbness in my arms and legs, unable to sit up straight or call properly for help from anyone and to be honest, I'm too weak to bother trying at most times this happens. This is a classic situation of me at my worst when I need an infusion and have a bowel blockage
With riding still not being on the cards any time soon and much to my mums horror, I've decided to momentarily swap riding a horse for riding a bike to give me something to do a couple of times a week
I've gone from needing infusions once a week to needing them every other day. Blood test results are all over the place and we have no clue as to what's causing it, but at least there's a reason I feel like a wet sock and keep collapsing at night. Safe to say I miss riding Daisy and competing so so much- it feels a world away from my current situation but I know we will get back to that point again.
It's taken nearly two hours to be admitted to hospital today after being passed form department to department and doing three full circuits of the hospital. Now in the right place and waiting for the 5th blood test of the week before another infusion- just hoping my veins can stand up to another round of bloods as they've been battered recently and keep failing. Thank you NHS
After two infusions bags of potassium my Nottingham team requested another blood test to see where my levels were at and we were astonished to learn that they were still low and I'd need further urgent infusions. I packaged a bag, grabbed some catheters and jumped in the car expecting to have another bag and come home.
I was soon admitted to the ambulatory care unit and hooked up to a cardiac monitor before having blood tests and eventually beginning the first infusion bag. After two bags we re-tested my bloods at midnight expecting to be able to go home, but they hadn't changed at all. I was no longer absorbing the potassium and my heart rate was continuing to drop as I grew weaker.
I felt so useless though not knowing IF we could actually get my levels up, without sufficient potassium the heart and vital organs are unable to function properly and time felt like it was slipping away from us as things got worse.
It became clear that we urgently needed to get the potassium in before things worsened, so the team prescribed a further two bags in the hope of pumping me full of it to help absorption which finally brought my levels up a fraction enough to ease the worry.
For now it's back home for a day before another blood test. I have a telephone consultation with the team at Notts tomorrow too so hopefully we can fill in some gaps and keep them in the loop.
A small delivery came recently, and was such a lovely surprise - two rosettes from Trophies for everything that had been personalised for me and mum! They are so beautiful and really lifted my spirits after a whirlwind couple of days, sometimes it's the little things that make a big difference.
It's been over three years since I first began having regular infusions and blood tests, each time needing to take blood, cannulate and enter the veins with a needle once if not usually multiple times.
Regular IV access causes our veins to begin to form scar tissue from the repeated stabbing, making the skin and veins much tougher and harder to enter the more you continue to enter them. We've struggled to get bloods from me successfully for over a year now, often needing several nurses to have a try on both arms multiple times a week and joking that I had the veins of a 70year old patient.
It's taken a total of 8 attempts to try and get blood this morning at hospital for my potassium infusion, the sample we did get then hemolyzed (the sample blood was damaged) meaning we didn't have a test results and I couldn't have my usual two bags. We've had to go home without a blood sample or full dose of potassium and have been told to try and get a sample tomorrow locally and then infusion Friday (by then it will have been 8 days with no potassium- I'd usually have 6 bags in that space of time). Without any IV access at all I can't have the potassium infusions that keep my heart going and keep me alive, I thought this would be months away but maybe I was just blissfully ignorant to how much of a battering they've taken...I could really do with being an octopus and having a few extra limbs at this point! 8 fresh puncture wounds later and we decided to call it a day, go home for the night and just hope that my bloods weren't critically low.
21st May 2020, with a BMI of 12.7 according to a video by Mummy Toombes, she gets TPN. A year later she celebrates her TPN birthday which she calls "second chance day". On her Instagram there are pictures with other TPN youngsters on the ward. She looks sufficiently chunkier now. Mummy Toombes is very unhappy with gubbernment for not prioritising Evie during the pandemic, wanting her to "thrive not survive".
A few more posts where she is clearly very bored and/or devoid of attention: What's wrong with her?; I'm 18 and I don't wear pants; Confused by some of my posts? And a post with her teddy bear: "P.s my teddy bear is a care bear named 'cheeky bear' , I've had him since I was 3 and he's been to most hospitals with me since then. He also negotiates with Doctors when I'm too tired too!"
In March my stoma surgery was postponed, since then we've had a desperate few months going through the motions of trying to slow any deterioration and keeping me as comfortable as possible until surgery was available. Even with the high risk of COVID-19 at the moment we have been able to put a date together and stabilise my blood levelsenough to make it safe for surgery. I've been in hospital for a few weeks now since the potassium levels in my blood dropped critically low (again) and since then it was decided that it wasn't safe to go home and risk them dropping again
The stoma surgery happens in September 2020. She neglects her blog and switches to instagram. It's not particularly interesting, apart from not being able to manage oral intake which makes the ileostomy pretty redundant.
There has also a secondary hope that I could *possibly* begin to eat normally again and have my Hickman line removed and be taken off TPN. -TPN is the lifesaving nutritional support I’ve been on that is delivered via my Hickman line in my chest into the bloodstream. I’ve spoken previously about the drastic risks this comes with, which is why the team here were so keen to wean me off TPN-
After two weeks of trying every way possible with my NJ feed and oral intake unfortunately this is just not possible. My digestive system isn’t ready or able to sustain itself normally and I still heavily rely on TPN. It’s made me so ill the past few weeks, I’ve vomited every single day we’ve tried, my throat feels red raw, I’ve lost so much fluid that its had to be replaced with IV’s regularly and monitored closely.
They discharge her and she makes it three days at home before her potassium plummets. A month later she's back on the horse.
We've spent today desperately trying to speak to my Doctors to address my potassium issues. My blood tests keep coming back in the critically low zone (where the loss is so significant if can stop your heart and vital organs) and haven't been able to get any help as of yet.
Just to get you up to speed, I’ve had low levels of potassium in my blood for over three years now, this is known is ‘Hypokalemia’. - It’s a level so low that it can starve your vital organs of potassium (which is the fuel they run on to work!) amongst other things, which is why it must be treated with intravenous potassium infusions (into the bloodstream via my Hickman line) to help maintain sufficient and safe levels.)
I was admitted last week as once again my levels had dropped critically low, my heart was slowing and I was disoriented and had lost feeling in my limbs. These are all of the classic signs that things are serious and the levels are critically low.
I’m now thankfully out of the high depency unit where I was being closely monitored and back on my usual ward. Today I saw my consultant who explained how complex and worrying this is now becoming, we can’t keep risking palpitations, respiratory failure and the never ending list of risks it causes.
We are now running every test possible to get to the bottom of this and attempt to find a cause. (Which is a lot easier said than done.) With it being so confusing, my team are involving a..
-A biochemist/pharmacologist specialist
-My current Urology consultant (Bladder)
-More renal doctors (Kidney)
So whilst we have no idea what to do, what will happen or how long I’ll be here, the team have been really on the ball for investigating this due to how serious it is becoming, which is all I could ask for...hence the reason to smile today! We’ll continue to #FindAWayNotAnExcuse
The past week has been full of tests, investigations and my doctors repeatedly saying ‘we really don’t know why this is happening’ -which yes, as you can imagine is not the most comforting thing to hear.
The team wanted to let my potassium levels drop, so they could observe any patterns and see what was happening for themselves. (Whilst necessary this was also worrying for me as it is so dangerous to do and the pressure on vital muscles to keep functioning such as the heart increases hugely during this process.)
My recent blood tests and various samples have finally come back...and have caused a lot of raised eyebrows amongst my team at QMC and the additional professionals that specialise in potassium.
There are multiple theories for what is causing this, our first is that it is due to chronic dehydration. I’ve been left so poorly for so long, with minimal nutrition and hydration. This *could* have sent my body into some sort of survival mode, and I’m now producing not 2x or 3x but 50x the amount of hormones needed for my kidneys and fluid levels. FIFTY TIMES MORE!!!
Moving forwards, there’s a potential I’ll be needing a lot more tests on my kidneys and help from specialists when they are available. For now, we have increased my fluids (basic saline and potassium infusions that go alongside my TPN into my Hickman line, to better meet my needs for now.) with the hope of hydrating me and encouraging my kidneys to wake up!
With Christmas just around the corner, and now knowing that we have a whole new kettle of seemingly very rare and worrying fish to deal with, my consultant has put in place a TPN plan that will be safe for me to return home and try to enjoy some time with my family whilst we can. They’ve been incredible with me during this admission, and have taken on this challenge knowing how complex it will be, but still giving their best efforts- something I am so grateful for, especially during a pandemic!
So..
-a whole new TPN regime (fluids and nutrition into my bloodstream for up to 22hrs a day)
-more tests and investigations to prepare for in the neat future
-I’ve left a few doctors scratching their heads and completely bewildered!
But I’m going home to see my family and the animals whilst I’m in a good enough condition to do so, and I am SO excited!#findawaynotanexcuse
Potassium has been a huge issue for the past 4years, my bloods drop to critical levels within days of an infusion and it often means emergency admissions, immediate heart traces to monitor my heart function, and me feeling like a zombie until my levels are replenished.
But this week, my bloods have been stable for the first time in four years. We haven’t felt sick with worry, we haven’t been to A&E as an emergency. I was home, feeling relatively okay.
Having TPN and potassium infusions at home is time consuming, risky and a whole new lifestyle. But to know that it’s worthwhile , productive and is helping to manage my condition feels so rewarding
From here on out there's not too much apart from lengthy captions with TPN education and horse pics. No new developments until she posts a picture of her bloody urine on 16th June. Gets fluid overloaded from TPN so changes her prescription on 12th July. Mentions nearly throwing up a sip of Lucozade from nervousness in August. Posts a few reels about being allergic to dairy and liking gin. Has a fuss over healthy people getting IV vitamins because they're designed for people like her.
"I may not have many friends, but I have the fluffiest, most lovable and hilarious pony I could ever dream of"
And that's it. No posts since 24th November which was the final day of the trial - she made a TPN post with an old picture with the nose hose still in. She's turned off comments for that post so I'm wondering if she's had any backlash since the ruling went viral. I actually wonder what she'll do from here on out since all the attention she's ever had so far has been positive. Regardless, I don't think I'll have much to post about her until she ends up in the news again.
Mysterious symtoms that get worse at home you say?
It's Kelly's blood transfusions all over again. But what could possibly cause this bizarre "idiopathic" hypokalemia is not running feeds and fluids as you're supposed to, restricting and taking fuck loads of laxatives. That would do it.
Sus sus sus sus sus
Mysterious symtoms that get worse at home you say?
It's Kelly's blood transfusions all over again. But what could possibly cause this bizarre "idiopathic" hypokalemia is not running feeds and fluids as you're supposed to, restricting and taking fuck loads of laxatives. That would do it.
Sus sus sus sus sus
Just because I didn't make it so clear, she posts about the doctors wanting to observe her falling potassium on 29th Nov. Then goes home on 11th Dec after conclusion of tests. Compare that to the three days it took for her potassium to plummet whilst she was at home.
Also with her bowel issues she would have had laxatives prescribed plentifully. I definitely saw her talk about movicol at one point. But she's had issues with eating since childhood, apparently, and we all know what restrictive intake (for whatever reason) does to the mindset of a teenaged girl.
The best way to fix this would have been to give her a salt lick like for her horses.
Just because I didn't make it so clear, she posts about the doctors wanting to observe her falling potassium on 29th Nov. Then goes home on 11th Dec after conclusion of tests. Compare that to the three days it took for her potassium to plummet whilst she was at home.
Also with her bowel issues she would have had laxatives prescribed plentifully. I definitely saw her talk about movicol at one point. But she's had issues with eating since childhood, apparently, and we all know what restrictive intake (for whatever reason) does to the mindset of a teenaged girl.
The best way to fix this would have been to give her a salt lick like for her horses.
Get out there and patent that idea. Mineral licks for Ana chans.
"Don't want to eat food cos food is for fatties? Feeling like shit? Don't want to risk another trip to hospital in case they admit you for refeeding? Try new ana-lick. You'll go from wobbly foal to prize show pony in no time and the best part? No calories!"
www.reddit.com
Oh dear...a symptom I can no longer pass off to mum as 'it'll be alright in half an hour'- even though I did try desperately to!
Safe to say I miss riding Daisy and competing so so much- it feels a world away from my current situation but I know we will get back to that point again.
8 fresh puncture wounds later and we decided to call it a day, go home for the night and just hope that my bloods weren't critically low.
-TPN is the lifesaving nutritional support I’ve been on that is delivered via my Hickman line in my chest into the bloodstream. I’ve spoken previously about the drastic risks this comes with, which is why the team here were so keen to wean me off TPN- 
These are all of the classic signs that things are serious and the levels are critically low.
Today I saw my consultant who explained how complex and worrying this is now becoming, we can’t keep risking palpitations, respiratory failure and the never ending list of risks it causes.
We’ll continue to #FindAWayNotAnExcuse 
#findawaynotanexcuse
