Many people suffer from conditions that may not be visible to others. Yasmin Swift, who was simply going to the local pub to catch up with a friend, was one of these people. After a fun time with her friend, she returned to her car to find a note had been attached to it. The note said that she had no right to park in a disability spot, which was not even close to the truth. Swift was furious upon reading the note and she instantly knew that she had to do something about it. Read on to find out the full story of this girl and the invisible disease that she must battle every day of her life.
First Symptoms
Yasmin Swift was like any other normal teenager who had just graduated from her high school and gotten a job at a hair salon. Everything was quite normal in her life until one fateful day when she started to feel something different.
One day she woke up and her legs, stomach and eyes had swollen up. She brushed it off as allergies at first but the truth was that it was something much worse.
Finding Out It Was Not Allergies
Yasmin thought that that she had had an allergic reaction when her legs started to swell up. Her body was beginning to swell up too. She tried to reduce the swelling by using over-the-counter medicine.
She soon realized that it was not allergies and that her medications were not helping her at all. Her condition soon began to take a turn for the worse when she started to feel a shortness of breath and became exhausted.
Mom Begins To Worry
Yasmin Swift’s mother was worried about her condition and she wanted to take her to the doctors when the first symptoms began to appear. At this point, Yasmin still did not consider the symptoms to be scary because she thought they were still allergies. She began to treat them on her own.
Soon enough, Yasmin realized that the medicines that she was taking were not helping with her condition and she decided to take her mother’s advice to go and see a doctor.
Time To Relax
Yasmin had taken her mother’s advice seriously and she decided to go to the doctor after all. This is where things took a rather unexpected turn. The doctor saw that she was very exhausted and recommended that she needed to take some time off.
After the visit to the doctor, Yasmin decided to take the doctor’s advice and she began to relax a bit to try and reduce the stress in her life. In most cases, this would have been an easy solution but in Yasmin’s case, it was only the beginning of a nightmare.
Getting Worse
Yasmin’s condition was getting worse by the day. Before the first symptoms appeared in her life, she had quite a healthy routine. She hit the gym five times a week and no one would have pegged her to be the kind who got easily exhausted.
However, after these symptoms appeared, it was a real struggle for her to even go from one room to another. Her breathing became heavy and her health deteriorated so much that it was clear that neither an allergy nor exhaustion would make her feel this bad.
Regular Visits
Yasmin was now a regular visitor to the emergency room. The hospital staff began to know her by name and even though her condition was getting worse by the day, no one could make a diagnosis. The staff did numerous tests on her but the results always pointed to something that was not serious at all.
Her legs were still swollen and her breath was very short. She admits it was really scary for her when she realized that her symptoms were not going to go away on their own, even though the doctors were telling her that nothing was wrong.
Mom’s Fear Of Losing Her
Yasmin’s mother was very fearful of losing her daughter. She had seen a young woman who went from going to the gym five times a week to becoming so weak she could not even go up the stairs on her own.
Even though Yasmin Swift did not undergo any physical exercise due to these symptoms, she was still losing weight. She lost her appetite and her mother admitted that she was very fearful of losing her daughter.
Beginning To Doubt Herself
Time was flying by and months had already passed since the first symptoms arrived. There was still no answer to what Yasmin suffered from and her condition was getting worse by the day.
It looked like things were just going to get worse and worse.
Yasmin admitted that she was in a really dark place and she began to let her mind wonder to some negative thoughts. She was finding it difficult to believe that all the tests were coming back negative despite the horrible condition that she was in.
Reaching The Diagnosis
Almost a whole year had passed with doctors carrying out various tests to find out what exactly was causing her condition. However, they finally managed to reach a collective verdict where they could agree on something.
Yasmin 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 be diagnosed.
She said that she felt relief since after countless tests, there was finally a name for her condition.
Her Condition
Idiopathic pulmonary arterial hypertension (IPAH) is a lung disorder characterized by high blood pressure in the pulmonary arteries. In this instance, ‘idiopathic’ means an ‘unknown cause’ of the pulmonary artery hypertension.
Due to this disorder blood flows through the stiff and narrow pulmonary artery with greater pumping force from the heart, and the high blood pressure in the pulmonary artery damages both the heart and lungs.
Accepting Her Condition
Yasmin finally had a moment of clarity when she knew what was going on with her body. She 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 was given 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 or cure it, she just had to accept it.
Going To Therapy
Yasmin had been given her medications and her quality of life was beginning to improve a bit. However, the medications were not easy for her to handle.
Yasmin had an intravenous drip attached to her body all the time, even when she showered or slept. The drip had a pump which helped the medications circulate her body and lower the pressure her heart created in the artery.
Preparing The Medicines
Yasmin had to prepare the cassette of medications every 48 hours. She and her mom are the only people in Kent who are 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. Sometimes her mom prepared them because it was exhausting for Yasmin to do it all the time, but she always attached them to her own body, since she simply didn’t want to be reliant on other people too much.
Becoming Dependant On Medicines
Yasmin posted on her Instagram page explaining that it was very difficult for her to take all the medicines. 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.
The Side-Effects
Yasmin was very grateful about the fact that the medicines were finally giving her the opportunity to continue on with her life. 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 a 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 the symptoms entered her life, Yasmin Swift led a very socially active life. She used to like going to festivals, spending time with her friends, and 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
Yasmin found out that this pump was going to be attached to her every day. This meant that she would not be able to swim anymore and it made her very sad. 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.”
A 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 her body, her perspective of life changed.
She knew she wasn’t apt to do everything she used to, but she learnt to cherish every day, and she was determined to continue living her life as normally as she could.
Going Out
Yasmin was determined to live her life as normally as she could. She did not want to let the IV pump hinder her life. One night she decided to go out with one of her friends for a few drinks.
It was July 19, 2018, and after parking her car in a disability parking spot and putting her blue disability placard on the mirror, she headed to the pub. Yasmin had no idea that her life was going to change forever.
Finding The Note
After Yasmin said goodbye to her friend, she went back to her car to find that there was a note pinned to her car’s windshield. The note was very upsetting for the young woman who was suffering from a serious heart and lung condition.
Her family and friends were well aware of the struggle that she was going through in her daily life but it seemed like strangers were still not aware and they judged her to be fit just because she looked normal.
The Note
The note on Yasmin’s windshield said that she was parked illegally and that she was not disabled. The note also threatened that the person would inform the authorities immediately because Yasmin was parked illegally.
Yasmin felt fury raging through her body. She knew she had to do something about it, but she also knew she would never be able to find the person who wrote it and speak to them, since the note was anonymous.
Taking The Note Public
Yasmin posted the picture of the note on her Facebook profile and wrote a detailed message explaining her condition. 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 to just see her as young and healthy, when in reality she has a debilitating illness.
Disability Is Not Always Visible
Yasmin used Facebook as the public platform to communicate with the person who wrote the note.
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!”
Response On Her Post
As you can imagine, Yasmin’s post went viral. People began to comment on her post and started to share it too. 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 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. She wanted to convey that not being in a wheelchair did not mean that she was not disabled and that she did not have the right to park in the 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
However, this was not the first time someone had 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.
A Cowardly Act
However, this anonymous writer was different from the others that she had encountered before. The reason that made Yasmin so angry was that the writer of the note chose to be anonymous.
She felt that it was one thing to be curious and even to look but it was entirely a different case to write about it and also threaten to inform the authorities in the same note. Yasmin felt that it was a cowardly act since there was no way of tracking the writer.
What Was Next?
When Yasmin posted about it on Facebook, we know that she received quite a lot of positivity from her friends and family. But she decided to go 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.
Revealing What Others Do Not See
Yasmin posted quite a number of posts after that. She also conducted a lot of interviews. All of these were done so that she could talk about her condition more openly. She wanted people to know about the hidden difficulties behind the disease.
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 has to wear earplugs for it.
Crowdfunding
Yasmin’s parents had always been there for her. However, this time around, it was her sister Nicole that decided to help. She took the concept of caring to a whole new level.
Since the treatment of her condition, the costs for care and medication was emotionally, but also financially exhausting, Nicole decided to take some action regarding raising funds for Yasmin, while also spreading the word about PH.
Gathering The Money
Nicole had set the initial goal of £800 for her sister’s treatment. However, people were responding very positively towards the fundraising and Nicole was very surprised by this. In the end people donated a total amount of £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 was such a success, Nicole and Yasmin decided that they would host more events in order to raise more funding and awareness about this invisible disease. The purpose of these events was to help people 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.
Creating An 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 that some people were not sympathetic enough about invisible conditions and she was determined to spread awareness.
A Positive Page
Yasmin was a bit worried about how her page would be perceived by the public. However, in October, she felt that the time was right to take action. Even though the idea of the page was very serious, she saw it as a positive page.
She would give 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
Yasmin posted a picture in which she explained how important the support of her friends and family was for her. Thanks to her mom, sister and her loving boyfriend it was easier for her to get through the hard times she had experienced.
The unconditional love and support that she received from everyone around her 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 Is Important
Her loved ones 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, might help a lot, so she emphasized their importance to her followers.
A Year Of Coping
After a year of determining what was wrong with her body, Yasmin shared on her Instagram account that it was important to never back down. When she remembered the days when she still hadn’t been diagnosed she admits life was very scary.
They almost released her from hospital without a diagnosis. But, luckily, she fought hard, and so did the doctors at the hospital, and in November 2018 she expressed how happy and grateful she was for handling it all for a year already.
Birthday Incoming
Yasmin’s mother, Mandy, celebrated her birthday with her daughter. Yasmin was feeling a lot better in 2018 and the medicines were really helping to manage her symptoms which meant the girls could finally go out and celebrate Mandy’s birthday.
They were relieved in a way, especially if they looked back on the same time the previous year when it was really impossible for any of them to celebrate.
Feeling Bad, Once Again
There was a time in December when Yasmin started to feel swollen again. She was admitted to hospital in order to get rid of the extra fluid that was gathering in her leg, but she had a feeling 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.
Back To The Hospital
Once the ambulance arrived, the attendants determined that Yasmin was running a high fever and that her oxygen levels were low too. Her oxygen levels were at 88% while the ideal level should have been 95%.
They took her to the hospital for additional tests and she felt devastated. 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
Yasmin had a feeling that she would not be celebrating her birthday as she had planned. This feeling came creeping in right before her 20th birthday, especially after spending 5 days in hospital in order to reduce fluids from her body.
Unfortunately, she was right. After being re-admitted to hospital, she had to spend more time there for further 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.
When The Medications Stopped Working
Numerous tests showed that the medications were not doing enough for Yasmin’s body. It was a huge shock for the young woman. She knew how hard it was for her to accept the therapy.
Somehow, she had gotten used to everything and she was devastated to find out that 6 months later the treatment was not good enough for her. Some people with her condition used the therapy for years, but unfortunately, this was not Yasmin’s case.
Going To Plan B
The medications were the first plan to combat her condition but as it turned out, after numerous tests, the doctors realized that water had begun to gather in Yasmin’s body, mainly 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 terrified upon hearing the news. The doctors had informed her that her clock was ticking and that she had only 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.
A Difficult Day Indeed
On January 7th, Yasmin was supposed to sign the transplant papers. She waited to see the surgeon who would give her the details of the surgery before signing.
However, 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.
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, the good news was that she did not need a heart transplant but only a double lung transplant.
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 Papers
Yasmin is one of those people who like to know all the details of everything before agreeing to them. However, with the transplant papers, she did not even know what to ask for. She had already been given 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 research, choosing the lungs by herself or letting the doctors decide. She signed the papers, feeling a bit rushed through it.
The Wait
The very next day, Yasmin got word that she was active on the list. This was really good news for her, because her condition was very time sensitive. Her mother explained that she was a top priority in the super urgent list for lung transplants but it would still take about 11 days for the lungs to become available for her.
Yasmin explained that the waiting game was the most difficult during the nights, since she usually overheard a lot of the calls informing patients of their match in the evenings or in the early morning hours.
The Call
Yasmin remembers the night when she received the information about her match. 17 days had passed since she had first been put on the super urgent list for lung recipients.
The doctor came in to inform her at 9:45 PM that her operation was scheduled for 5 AM. She could not stop smiling at the doctor and she had a lot of time to kill until then.
Friends And Family Came
Yasmin’s closest friends and family had always been there for her and the day of the operation was no exception. Everyone was looking at her rather strangely, perhaps wondering if they would ever see her again.
This was a particularly difficult time for her family since they had to say their goodbyes for the time being and not know if the goodbyes would be permanent.
Sharing The Journey
The operation went through on the 2nd February and with the hard work of the surgeons and her good luck, everything went fine. Now it was time for the post-op period and Yasmin knew that this was not going to be a piece of cake.
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 had formed a connection with her followers and she wanted to share her journey with them so as to not give up on them.
Organ Donation
Yasmin has always said that she was ever so grateful to the person who donated his lungs for her. When you think about it, it must have felt very surreal to her knowing that her life was saved by someone else.
She believes it is so sad that so many people pass away from not receiving the organ transplant that they need. Yasmin and her family wish more people signed the registry. Yasmin’s mom said, from her own experience, that if people had a family member in Yasmin’s shoes, they would truly understand the importance of it.
Getting Better
After the operation, the recovery was going quite well for Yasmin. Her heart echo after only 1 month showed that her heart had shrunk back to a normal size.
The more time passed, the better Yasmin felt and she was feeling really great with a new pair of lungs which she cherishes and takes good care of.
Meeting The Queen
In July 2019, Yasmin received an invitation to the official opening of Royal Papworth hospital, where her double lung transplant surgery was performed. It was really exciting for her because she was able to meet the Queen there. However, the Queen was not the person who Yasmin was most excited to meet that day.
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.
Back To Normal Life
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!
