Vickys Fight For Life

Vicky is a 30 year old lady from Fleetwood in Lancashire. Her early years of life were never straight forward, illnesses and injuries that didn't make sense. Doctors unsure of what was going on but kept on saying "she would grow out of this" unfortunately that was not the case. At the age of 12 Vickys health deteriorated and at 14 she had to drop out of school. Still with no answers other than its most likely anxiety related,  she was palmed off with heavy sedative medication to try and help. This obviously didn't. At this stage Vicky found herself unable to swallow correctly without choking and weight was dropping off her. Doctors saw this and prescribed supplements to help the weight loss but never investigated the cause of her swallowing difficulties, it was again, put down to anxiety. Years down the line, now in her 20s, Vicky found herself unable to continue functioning with normal life. Her health became so bad she was unable to work, was extremely fatigued, was passing out on a regular basis, had extremely painful joints, still unable to swallow solid food, had lots of gastrointestinal trouble, bladder and bowel problems, severe headaches and so on. All of this coupled with debilitating mental health issues which had developed over the years and psychological disturbances,  rendered her housebound. Living like this for someone in their early 20s was difficult enough but just before her 22nd birthday her dad became very unwell and almost died. He survived but was extremely unwell and was only given a maximum of 2 years to live. Unfortunately when Vicky was 23 her dear father, her best friend passed away. Stricken with illness herself and unable to leave the house, sadly she was unable to be with her dad when he died, nor was she able to attend his funeral. Amidst her distress at losing her dad this spurred her on to get answers to her own health problems. Many many doctors appointments (all home visits with being housebound) later, still no answers were found. Yet this young lady was in constant pain, fainting regularly, unable to maintain weight due to swallowing and GI issues, but no one had answers. Because of this she was told it was all in her head. No one would listen to her or take her seriously. This made Vicky spiral into depression and self harm. Suicidal thoughts crept in and on many occasions she contemplated taking her own life because of the sheer amount of suffering she was enduring but being told there was nothing wrong. Thankfully, Vicky found and amazing GP in her area by chance a few years ago who visited her and started to look outside the box and piece by piece work out what was going on. After a lot of tests, again, all were arranged at home, even an echocardiogram which took three months to arrange with the help of a cardiologist and great nursing team, she finally had some answers. Her GP consulted with a cardiologist, rheumatologist, neurologist, endocrinologist, general medical team and coworkers to discuss her unusual and complex case to figure out what was going on. Subsequently she was diagnosed with a genetic condition called Ehlers Danlos Syndrome, this causes faulty collagen in the body affecting joints, ligaments, internal organs, skin, eyes, nervous system and so on. In turn this condition has caused her to develop dysautonomia which is an umbrella term for a dysfunction of the autonomic nervous system which regulates everything the human body does without conscious thought, for example heart rate, blood pressure, breathing, body temperature, bladder and bowel function, pupil dilation, digestion and so on. Vicky was told that she had a type of dysautonomia called PoTS - or postural orthostatic tachycardia syndrome. This causes an abnormally high increase in heart rate and blood pressure every single time she stands up. Anything from 120 to 180 beats per minute for her. Blood pools into her legs upon standing and her nervous system cannot function enough to correct this, meaning that she then suffers cerebral hypoperfusion, meaning her brain is starved of blood and oxygen so her heart rate increases and increases to compensate for this and to try and get blood to her brain before serious damage is caused from the lack of oxygen. Her body is not able to do this so it then causes her to faint in order to correct the postural change and to be able to circulate blood back to her brain, then she will come round. This, as you can imagine, causes Vicky severe issues and has left her unable to mobilise safely without symptoms or fainting. With this and the EDS making her internal organs weak and prone to damage or rupture, it's caused her heart to become weak and she has now developed mitral valve issues with regurgitation of blood and right bundle branch block. Also, her lungs have hyper inflated (stretched due to the EDS) so are now larger than they should be which causes oxygen saturation problems as she is not able to expell all of the air she breathes leaving some trapped causing blood gases to change and fluctuate. Vicky is at high risk of a heart attack at any time. Another factor that adds to this risk is the severe weight loss that has come along side her conditions. Vicky developed gastroparesis and dysphagia from complications that can arise from having ehlers danlos syndrome (EDS) This means she is unable to swallow or digest food as she has a partially paralysed GI tract from the throat down and also an uncoordinated swallow which causes choking.  Vicky has lived on prescription sip feeds since her mid teens. She has not eaten a meal now in 15 years. As you can imagine this has all impacted on her mental health, already diagnosed with severe mental illness and psychological disturbances Vicky has been housebound for the past 13 years. She has missed out on a normal 20 somethings life, no nights out, no dinner dates with her partner, no holidays, no cinema trips or shopping, nothing. None of that whatsoever.  With the use of a powered wheelchair she has been able to leave her house a very small handful of times but only within a mile radius from her home due to her debilitating mental and physical health problems. But this is as far as she has been physically or mentally able to manage. Vicky, at one point around 18 months ago, had paramedics with her as doctors thought she was having a heart attack and even the thought of possibly dying wasn't enough to be able to get her to travel the 45 minute journey to the nearest hospital, she has not been that far since she was 17. Luckily the paramedics, her doctors and nurse ruled out heart attack with tests at home through the afternoon, they were with her for three hours because they were unable to safely get her to travel to the hospital. Over the last 12 months or so Vickys health has deteriorated rapidly. Her PoTS has become unmanageable which is causing her to fall or pass out several times a day. This is causing more injuries from falling because of her EDS, painful joint subluxations, torn ligaments and bad bruising. Vicky also has a severe issue with her neck but has so far been unable to travel to the nearest mri centre roughly an hour and a half away to have this further investigated. Her doctor thinks this is most likely another complication of her ehlers danlos syndrome. It desperately needs investigating as soon as possible. Falling more is causing this to progressively get worse and with having dysautonomia it means her body does not tolerate medication well so pain relief is difficult. Her gastroparesis and dysphagia has become so severe that she is unable to tolerate the three quarters of a litre of sip feed she needs per day and three litres of water to help treat her PoTS. Because of this she has lost so much weight now her bmi is only 13.2 weighing a tiny 6st 1lb. Her body has gone into extreme muscular atrophy and this is adding to the strain on her heart. Her arms and legs are so weak now she struggles with all daily tasks, even small things like opening her own drink. She has been told now its not medically safe for her to stand and move around because of the low bmi and extra strain on her heart  from the PoTS. She is not able to sustain herself and recent tests between Christmas and New Year showed she is malnourished and dehydrated. Vicky is bed or sofa bound throughout each day now because of these conditions and also others she suffers along side, such as the neurological condition cluster headaches, autoimmune disease, neuropathy, fibromyalgia and more, she relies on her partner Dave for her daily care. Medication, supplemental oxygen and as much sip feed as her stomach will tolerate without making her want to vomit are the only things keeping her alive and making the days just about tolerable but unable to nourish and hydrate herself well enough now, Vicky is in desperate need of help before it's too late. Vickys currently in a situation where she is too sick to travel because of her mental health and physical conditions. It's not safe for her to travel conventionally even if she didn't suffer with the psychological disturbances. Her GP is stuck as to how she can help and her last appointment was a bit disappointing because Vicky was hoping to be able to start home IV treatment to help hydrate and nourish her but this was knocked back. Typical NHS protocol and funding issues. So she is just stuck at home, unable to drink or feed to sustain her extremely weak body on what is essentially borrowed time if she does not get the help she needs. Her GP said she needs to find a consultant who specialises in all three main conditions, EDS, PoTS and gastroparesis to figure out what can be done to help her. Only she isn't able to find such a specialist anywhere around the area. She only knows of one doctor in Surrey which is hundreds of miles away, who has more knowledge of these conditions. Apart from this she is at a loss as to how she help. Being housebound without appropriate means of transportation is one obstacle the second is finding the right specialist. Worst comes to the worst, Vicky was told she would need major surgery to implant a port into her chest and a J tube in her bowel to nourish and sustain her artificially but with the situation she is in, taking all aspects of her health in to account, Vicky would need to see the most specialist surgeons and knowledgeable doctors in the country. Which means she will most likely have to travel and definitely have to pay privately for her care. As it stands she has no other option left. She is basically starving to death without help. So what we are asking is enough money to get her the appropriate transportation to be able to overcome the obstacles with travelling and money to see the consultants she needs and possibly operations, plus treatment she is going to need long term as these are life long incurable illnesses that have limited her life to the stage she is housebound and bed/sofa bound, unable to meet her nutritional requirements to sustain life, relying on her partner for personal needs, in constant pain and suffering immensely each day. It's no life for a 30 year old who had the world at her feet. She has already missed out on life since the age of 12 yet she is so kind and generous towards others, the time has come where she is literally in dier need of people to find it in their hearts to save her life and then give her the life she deserves to live. Any donations would be greatly appreciated. Lots of events and fun things are in the pipeline for fundraising and we thank you all in advance for your help and generosity. WHAT YOUR DONATIONS WILL BE USED FOR. First and foremost an appropriate vehicle for Vickys parter Dave to adapt in such a way it will accommodate all of her needs. Medically, physically and mentally. It will be adapted in such a way Vicky will be able to comfortably travel whenever is needed,  to and from hospitals or specialists, with seating that can be changed to meet her postural needs and symptoms relating to this. An appropriate place to lie down when needed to minimise the risk of harm, strain and distress travelling causes Vicky. The vehicle will also need to be adapted to fit all of Vickys medical equipment and mobility aids. Power chair, oxygen when needed and other supplies etc. Please remember, Vicky is housebound and has not been able to travel more than a mile from home in over 13 years now and even this has been a battle and only a handful of times in those years. She missed her own fathers funeral due to the severity of her conditions. She has not even made it to the hospital when desperately needed. This is severely detrimental to her health and care. If any other means were an option to her then she wouldn't be in this situation now. Her and Dave have literally tried and thought of absolutely everything.  Secondly, Vicky needs a number of investigations by specialist doctors and consultants who are extremely knowledgeable in her rare conditions. For instance, just the cost of the investigation into the condition of her neck is just shy of £1000 at the nearest private hospital 45 minutes drive away. An initial consultation just to discuss Vickys gastroparesis with a motility specialist is £495. These costs are just to have one imaging investigation and one consultation so as you can imagine, further tests and treatment with the possibility of surgery for implantable medical devices will be much more but we cannot get an accurate price on this until we have managed to get Vicky to see the appropriate consultants for her needs. The amount we need to raise may increase slightly over time as we are thinking long term aswell as immediate care and treatment but for now we think the amount we set out to raise should be a great stepping stone towards helping save Vickys life.


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Vicky Nash 
Fleetwood, North West England, United Kingdom
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