Awesome - Teenager Blamed For Being Parked In A Disability Spot Even Though She Was There Rightfully So
Yasmin Swift was just going out to a pub to catch up with a friend. As she returned to her car, she noticed a note saying that she had no right to be parked in a disabled spot, which was so far from the truth. Yasmin was so furious that she felt she had to do something about it. This is a story about a girl who suffers from an invisible disease that’s more devastating than you could imagine.
First Symptoms
Yasmin Swift was just another teenager who had just graduated from high school and started working at a hair salon. Then, one day, she started feeling a bit different. She had strange symptoms, such as swollen legs, stomach and eyes. Her first thought was that it was probably due to allergies, but actually it was something way worse than that.
Not Allergy
Yasmin thought, as most people would think that the swollen body was a reaction to some form of allergy. She then, logically, tried to prevent it with counter medications for stopping, or at least soothing, the allergy symptoms. Soon she realized that the medications were not helping. On the contrary, her state began to deteriorate even worse, because now she also felt exhaustion and shortness of breath.
Mom Worries
Yasmin’s mom was very worried about Yasmin and she was pushing her to go visit a doctor from the very first symptom. Since the symptoms did not seem too scary to Yasmin, she decided to first try and figure it out on her own. Since the medications she thought would help did not do anything positive for her body, she knew it was time to take her mother’s advice and go pay a visit to a doctor.
Relax, Relax
When Yasmin finally listened to her mom’s advice and went to the doctor, things took an unexpected turn. The doctor thought that she exhausted and that she needed some time off. So, after visiting the doctor, she took the advice to relax a bit and reduce stress. It is true that in a lot of cases this should help, but in Yasmin’s case it just made her condition worse.
Getting Worse
Yasmin’s condition seriously deteriorated. Before her first symptoms she had had a pretty healthy lifestyle, which included going to the gym up to five times a week. But now, it was quite a struggle for her to go from one end of the room to another. Her breathing became heavy and her health deteriorated so much that it was clear that neither allergy nor exhaustion would have made her feel this bad.
Regular Visits
Yasmin became a regular visitor to the emergency room of the hospital. The hospital staff knew her by name. Though, despite her condition getting really bad, no one could diagnose her. They did numerous tests on her, but the results would only seemed as if there was nothing seriously wrong with her. But her legs were still swollen and her breath was very short. She admits it was really scary to her when she realized that her symptoms did not go away, but they only got worse, whereas the doctors were telling her that nothing was wrong.
Mom’s Fear of Losing Her
Yasmin’s mom was terrified with fear. She saw that her daughter went from an active young lady who used to go to the gym 5 times a week to a weak creature, barely able to go up the stairs. Yasmin was also losing weight despite the lack of physical activity. She had a really bad appetite and her mom admitted that she was scared that she was losing her daughter.
Doubting Herself
Months had passed and there was still no answer to the question of why Yasmin is getting worse and worse. The situation started resembling some movie script with Yasmin as the lead actor in a drama suspense movie. She admitted that she was in a really bad place back in the days, and the idea of her imagining it all also crossed her mind. It was difficult not to believe all the tests that came negative to various conditions.
The Diagnosis
After almost a year of numerous testing the doctors finally figured out what was going on with Yasmin. She was suffering from idiopathic pulmonary arterial hypertension disease, which is a very rare condition. That was partially the reason why it had taken so long to diagnose it. Yasmin said that at the moment of finding out about the diagnosis she felt a bit relieved, since after a year of the countless tests she had finally gotten an answer.
Her Condition
Idiopathic pulmonary arterial hypertension (IPAH) is a lung disorder characterized by high blood pressure in the pulmonary arteries. In this instance, 'idiopathic' stands for the unknown cause of the pulmonary artery hypertension. Due to this disorder blood flows through the stiff and narrow pulmonary artery with greater heart pumping force, and high blood pressure in the pulmonary artery damages both heart and lungs.
Accepting
After finding out what was happening with her own body Yasmin said, “At one point it got really bad, I was constantly in and out of A&E. The diagnosis was a relief at first, but now it’s just difficult to live with.” She had her medications and this meant that from that moment on she was literally attached to them all the time. It also meant that her life was about to change and she had to get used to it. The cause of the condition is unknown, so there was no way to prevent it, she just had to accept it.
The Therapy
After Yasmin got on her medications her quality of life improved a bit. But, being on these medications was not so easy to handle. Yasmin had an intravenous drip attached to herself all the time, even while showering and sleeping. The drip had a pump which helped the medications circulate her body and lower the pressure her heart created in the artery.
Preparing Medications
Yasmin had to prepare the cassette of medications every 48 hours. She and her mom and are the only ones in Kent who were trained how to do this properly. At first, it took Yasmin about one hour to prepare cassettes, but later on, she managed to reduce this time to 45 minutes per each. Sometimes her mom prepared them because it was exhausting for Yasmin to do it all the time, but she had always attached them to her own body, since she simply didn’t want to be reliant on other people too much.
Dependant on Medications
In one of the posts Yasmin explained how it was for her when she started taking the medications. She felt really annoyed for being reliant on numerous tablets, humorously mentioning viagra as one of them. But this was really true. While men use viagra for a very different purpose, for Yasmin it was one of the medications she took in order to be able to breathe.
Side-effects
Taking the medications gave her the opportunity to continue with her life and Yasmin was really grateful for it. But, taking so many different kinds of tablets made her feel a number of side-effects, such as headaches , sickness, water retention, and facial flushing. She also often had puffy face, legs, stomach and back. She also explained that most of the days she had headaches and felt as if she had a hangover.
Accepting the Change
Before she found out about her condition, Yasmin had a pretty active social life. She used to like going to festivals, spending time with her friends, going out… But she said that if whenever she decided to go out, she would feel really bad for the next 3 days. She knew it was important to have normality in her life, but everything had to be adjusted. “I don’t want people to act differently with me,” she said, “but be mindful that I can’t do the things that I used to be able to do and I walk a lot slower”.
Swimming with Dolphins
When she found out that the pump would be attached to her 24/7 and that this meant that she wouldn’t be able to go swimming anymore, she felt really sad about it. She had always dreamt of swimming with dolphins, and this was no longer an option for her once the IV was attached to her. Luckily for her, she could arrange a trip to Portugal before having the IV line fitted. As for her swimming with dolphins she wrote “This was the most perfect day, even more so knowing I won’t be able to experience this again.”
Different Life, Different Goals
Yasmin had been dealing with her condition for a year before she was diagnosed. When she finally realized what was going on inside of her body she, her perspective of life changed. She knew she wasn’t apt to do everything she used to, but she learned to cherish every day she wakes up alive, and she was determined to continue living her life as normally as she could.
Going Out
Since she was determined to continue with her life as normally as she could, despite the pump being attached to her all the time, one night she decided to go out with one of her friends. It was July 19, 2018, and after parking her car in disability parking spot and putting her blue disability placard on the mirror, she headed to the pub. Little did she know that her parking at that spot would change her life forever.
Finding the Note
After leaving the pub, Yasmin headed back to her car only to find a note that was very disturbing for this young lady with a serious heart and lung condition. All of her friends and family knew what she had gone through and what she was still going through, but it seemed like the strangers judged her for looking normal.
The Note
The note that Yasmin found attached to her windshield said that she was parked illegally at the spot and that she was not disabled. It also said that this person would inform the authorities about this “illegal” act. Yasmin felt furious. She knew she had to do something about it, but she also knew she couldn’t talk it out with the person who wrote it, since the note was anonymous.
Taking the Case to the SNS
Yasmin decided that this case should not just go unnoticed, so she took a picture of the note and posted it on Facebook. She wanted to speak out against the injustice being committed against her for looking ‘normal’. The note made it clear to her that people are quick to judge and just see her as young and healthy, when in reality she has a debilitating illness.
Not All Disability Is Visible
She decided to write back to the anonymous person who left the note on her Facebook account. She wrote “To the person in Tenterden who wrote this lovely message on my car last night.. Just because I look well doesn’t mean I am well! Do not judge me you have no idea what strength it takes to wake up each day and battle with my own body! If you would like to give me your heart and lungs I would happily go back to my old life! Not all disability is visible!”
The Response
Yasmin’s post went viral. People started commenting on it and sharing it. She couldn’t believe the support she received from everybody. People congratulated her on her brave act of speaking out. Also, she had tons of supportive comments regarding her condition. She said that she couldn’t even read through all the comments, but she was really happy that her post showed how sympathetic people were.
The Right to Park There
Yasmin said that if she had had an opportunity to speak to the person who left the note she would have said not to judge. The fact that she wasn’t in a wheelchair did not mean that she was not entitled to be parked in a disability spot. On one hand, she would like to have the opportunity to speak to this person, but on the other, she wouldn’t like to waste her words on a person who is so judgemental.
Dealing with People
This was not the first time someone had an issue with Yasmin parking in a disabled spot. She had experienced people approaching her car and interrogating her about her condition, trying to figure out why she was parked there. Sometimes these encounters left Yasmin in tears and sometimes she experienced panic attacks.
Cowardly Act
The anonymous writer was still different than any of the encounters Yasmin had had before. The sheer fact that they were anonymous made Yasmin so angry. It is one thing to be curious and even to look, but it is quite different to have the nerve to write about it, threaten to inform the authorities and, then, leave a message without any way of tracking you. It is a cowardly act.
What Next?
Writing the post and receiving all the positivity out of it made Yasmin think about going one step further. She realized that her voice could be heard and she also knew that she was only one of 100,000 patients in the UK with the same condition as her own. Those people were probably going through similar situations as she did, and now she saw a chance to raise people’s awareness about invisible diseases.
Reveal the Bits the Others Did Not See
In the following Yasmin’s posts, as well as the interviews, she tried to talk about her condition more openly. She wanted to reveal the bits that people did not see. She showed what a trouble it was to live with a pump and IV and how the cassettes of medications are prepared. In another post, she explained how it is to sleep with oxygen, explaining that it was so noisy that she had to wear earplugs for it.
Crowdfunding
Yasmin’s family has always been there for her, but this time her sister, Nicole, took the concept of caring for her to a whole new level. Since the treatment of her condition, along with the costs for doctors and hospitals, was emotionally, but also financially exhausting, Nicole decided to take some action regarding raising funds for Yasmin, while also spreading the word about PH.
Money Gathered
The initial idea was to raise £800 for her sister’s treatment. But soon Nicole was really surprised with the positive response this fundraising had. People donated in total £1770. Nicole and Yasmin saw this as a great opportunity to help others. Half of the money was used for the initial idea, which was to finance Yasmin’s medical treatment. The other half was given to the British charity supporting patients with idiopathic primary pulmonary hypertension.
Other Charities
Since the first fundraiser went better than they expected they decided to throw some other events for raising the awareness about this invisible disease, but also to help those in need. They started off with a family fundraiser at a barbeque event, again thrown by Nicole, but there was also the family’s lifelong friend, Sarah Ward, who ran the Brighton marathon to raise funds for Yasmin and PH charity.
Invisible Illness Instagram Account
In October 2018, just 3 months after the incident with the note on her car, Yasmin decided to create a new Instagram account dedicated to raising awareness about the invisible illnesses. She felt people were not sympathetic enough about any condition that was not physically visible and she was determined to spread awareness.
Positive Page
Yasmin was a bit apprehensive about how the page would be perceived, but in October she felt that the time was right for such an action. Even though the idea of the page was very serious, she saw it as a positive page, where she would gave tips and lend help to anyone with PH, or share her or other people’s experience. The page was targeted at people with any kind of invisible illness, such as anxiety, depression, mental illness, or those who were simply having a hard time.
The Support
In one of the posts Yasmin explained how important the support she has from her friends and family is. Thanks to her mom, sister and her loving boyfriend it was easier for her to go through hard times she had experienced. Their unconditional love and support helped her go through all the steps of her condition from the first symptoms to the diagnosis and therapy which included many bad side-effects.
Self Love
Her loving ones indeed mean a lot to Yasmin, but when it comes to dealing with any kind of a serious illness, she claims that self-love is crucial. Anything that one can do to make oneself feel better, such as candles, long baths, positive pictures or quotes around the room might help a lot, so she emphasized their importance to her followers.
A Year of Coping with PH
After a year of determining what was wrong with her body, Yasmin shared on her Instagram account a long post on the importance of never backing down too. When she remembered the days when she still hadn't been diagnosed she admits life was very scary. They almost released her from the hospital without a diagnosis. But, luckily, she fought hard, and so did the workers at the hospital, and in November 2018 she expressed how happy and grateful she was for handling it all for a year already.
Yasmin’s Birthday Approaching
Mandy, Yasmin’s mom, celebrated her birthday with her daughter who was feeling a lot better in 2018 than on her birthday in 2017. Medications were doing their job, and the girls could go out and celebrate Mandy’s birthday relieved in a way, especially if they looked back on the same time previous year. After this, Yasmin’s next birthday was approaching and everybody was so excited.
Feeling Bad, Again
One day in December, Yasmin felt swollen again. She was admitted to the hospital again, to get rid of the extra fluid gathered in her legs. She had a feeling, though, that she wouldn’t be celebrating her birthday the way she expected. Luckily for her, she was released after 5 days, on Saturday. Unfortunately, on Sunday she woke up from her sleep only to find that her whole body was cold, her lips were blue, and she was shivering. Her mom had to call an ambulance immediately.
Going Back to the Hospital
When the ambulance came they determined that Yasmin had a high fever and that her oxygen level was too low, only 88% whereas the ideal level is 95%. They took her to the hospital for additional tests. She felt devastated again. She did not like going back to the hospital so often, especially since she religiously took her medications, and she did everything she was told to do.
Yasmin’s Birthday
Before her 20th birthday, Yasmin had a feeling she wouldn’t celebrate it as planned, especially after spending 5 days at a hospital in order to reduce fluids from her body. Unfortunately, she was right. After being readmitted to the hospital, she had to spend more time for the tests. She, just like most people, did not like hospitals, but it seemed to be the place where she would celebrate her 20th birthday, so she had to accept it.
Medications Stop Working
After numerous tests, Yasmin got informed that her medications did not do enough for her and her body. This was a shock for Yasmin. She knew how hard it was for her to accept the therapy, but she somehow got used to it, only to find out after about 6 months that it was not good enough for her. Some people with her condition used the therapy for years, but unfortunately, this was not Yasmin’s case.
Plan B
After the tests, the doctors realized that the water in Yasmin’s body started to gather in her lungs and heart as well. Her kidneys also showed signs of a struggle. All of this meant that her body couldn’t cope with it all and they had to go to plan B, which was a transplant.
About the Surgery
Yasmin was gutted to hear this. She was also told that her clock is ticking and that at that moment she had about 2 months to live without a transplant. She needed a heart and double lung transplant, but if her heart would shrink back down from medications, maybe just a double lung transplant would be necessary.
The Most Difficult Day
It was January 7th and Yasmin was supposed to sign the transplant papers. She waited to see the surgeon who would give her details before signing, but even during the waiting time Yasmin was more apprehensive than usual. Everything was happening for real at that moment and there was no turning back.
Only a Double Lung Transplant
When Yasmin and her mom started talking to the surgeon, she told them that due to new medications that Yasmin reacted well to, she did not need a heart transplant, but only double lung. This was good news, because finding a match for both organs was a lot more difficult. Also, the hospital had done 50 double lung transplants and only one heart and lung transplant.
Signing the Transplantation Papers
Yasmin is a person who likes to know all the details before doing something, but with the transplant papers she didn’t know what to ask. She already got so much information on lung transplants, waiting lists, donor organs, the operation, long-term care, drugs and side effects and chronic rejections. Doctors had questions for her as well, regarding donating her organs to the research, choosing the lungs by herself or letting the doctors decide. She signed the papers, feeling a bit rushed through it.
Waiting
On the following day Yasmin got a call that she was active on the list. This was really good news for her, because her condition was very time sensitive. Her mom explained that she was the top priority at a super urgent list for lung transplants, but it still took about 11 days for lungs to be available. Yasmin explained that waiting game was the most difficult during the nights, since she overheard that the calls informing patients of the match most frequently occurred late in the evenings or in the early morning hours.
The Call
Yasmin remembers the night when she received the information about her match was quite bizarre. She was on the super urgent lung transplant list for 17 days then. She couldn’t stop smiling at the doctor who gave her information at 9:45 P.M. The operation was scheduled at 5 A.M. so she had a lot of time to kill until then.
Friends and Family Come
Yasmin’s closest friends and family had always been there for her, and the day of the operation was no exception. It was strange for her to look at them and wonder if she would ever see them again. The most difficult part for her was kissing her family goodbye and going through to the theater door.
Sharing her Journey
The operation occurred on February 2nd and, fortunately, everything went fine. The post-op period was yet to come and Yasmin knew it would not be easy. Despite it all, she was determined to share her journey with her followers explaining all the steps of the recovery, such as the first endeavors to stand up, eat soup for the first time, talk, go up and down the stairs… She knew her posts meant a lot to so many people and she did not want to give up on them.
Organ Donation
Yasmin has always emphasized how grateful she is to the donor. It felt surreal to her that someone else saved her life. She believes it is so sad that so many people pass away for not being able to get a good match. Yasmin and her family wish more people signed the registry. Yasmin’s mom said, out of her own experience, that if people had a family member in Yasmin’s shoes, they would truly understand the importance of it.
Getting Better
The post-op period went really well for Yasmin. Her heart echo after only 1 month showed that her heart shrank back to normal size. The more time passed, the better Yasmin felt and now she is feeling really great in her body with a new pair of lungs which she cherishes and takes good care of.
Meet the Queen
In July 2019, Yasmin got an invitation to the official opening of Royal Pepworth hospital, where her double lung transplant surgery was performed. She was about to meet the Queen and it was really exciting. But, there was one more person who she got to meet that day, and she was even more excited about him than meeting the Queen. This was Pedro Catarino, the surgeon who performed the surgery on Yasmin and thanks to him she can now have a normal life. She was incredibly grateful to meet this person and thank him for the amazing job he did with her new set of lungs.
Going Back to Normal
Yasmin has been recovering and going back to her life before the disease. She is hitting the gym more often, and she enjoys music festivals every once in a while. Her story moved so many people and she remains an inspiration to anybody with any form of invisible illness. It is not easy for a 20-year-old to go through everything this young lady did, but she has always had a positive outlook on life and nothing ever changed that. Congratulations to this beautiful and strong young lady!
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