PHighting my terminal illness

Everyone has a deep secret. Today I am revealing my biggest yet! For years, I have hidden that...

I AM TERMINALLY ILL

Yes me, that smiley spirited character – here is a snapshot into my challenging and difficult journey. I hope it educates, inspires and challenges your perception of those with my condition. Here is my story as a PHighter…

I have been keeping a secret

Life hasn’t always been normal for me growing up. I have been slowly dying since I was about 16 and I didn’t even know it. Neither did you! See that’s the thing about life, its fragile and unpredictable. Each day is a precious gift, not a given right.

I choose to tell my story today, as today is Rare Disease Day and my time on earth is precious. It has taken a lot of courage for me to make myself vulnerable to you all.

One in a million

I guess you can say I am a 1 in a million kind of girl! Shortly after my 25th birthday, I was finally diagnosed with Idiopathic Pulmonary Arterial Hypertension (PH) after years of suffering. PH is a rare disease and only affects 1-3 people out of a 1,000,000 every year. Trust my chances!!

Pulmonary Arterial Hypertension (PAH/PH) occurs when there is high blood pressure in the blood vessels that supply the lungs called the pulmonary arteries. The walls of the pulmonary arteries become thick and stiff, and can't expand as well, restricting blood flow to into the lungs. This reduces the amount of oxygen being circulated around the body.

Eventually the right side of the heart has to work harder to be more efficient in circulating enough blood to the lungs. The heart is put under strain and becomes weak, firm and enlarged, leading to damage to the heart and heart failure.

Fun fact: Viagra was actually developed for the treatment of heart disease, until it was discovered it had a rather naughty side effect for males. It is also used for the treatment of PH - and yes I take Viagra – 3 times a day!

Revolving doors

9 years of being undiagnosed passed by because I was rejected by medical professionals and didn’t fight back. A lack of awareness of this illness from both the sufferer and the medical profession often leads to prolonged periods of being misdiagnosed.

I felt like I was living in revolving doors, going round and round, not going anywhere. Imagine 9 years of hospital visits, tests, scans and pain without any explanation. I was close to believing I was a hypochondriac.

I just wanted to give up!

PH is mischievous. Its symptoms can often be masked by other common illness and can only become apparent once it has progressed severely. On one occasion I was told “you don’t have asthma but if you think you do, here is an inhaler” and was turned away. I was mentally and physically exhausted and my health continued to deteriorate until I was finally listened to and my PH became visible in specific tests. Perhaps if my PH was diagnosed earlier my prognosis could have had a better outcome. I became so ill that if I didn’t get my diagnosis when I did, along with the medical care and attention I needed, I simply would not be here today. 

P.S. Never give up!!!

You are so young – You look fine!

I often struggled secretly with flare ups in my health and chronic pain in my teen years. As a result, I had to drop out of applying to Oxford/ Cambridge to study medicine – how ironic! There is nothing more debilitating than knowing your mind can achieve more than what your body is allowing it to and that you are restricted in achieving your full potential.

I started blacking out and fainting. I remember fainting in an elevator once and losing my sight. Nothing has ever scared me like that.

The necessities of being able to function were becoming an everyday struggle. Simple things like walking up a flight of stairs or being able to enjoy a meal with family after work were no longer things I could do with ease. Pain and lethargy were now the new norm of my life.

Symptoms I live with include:

• shortness of breath

• extreme fatigue 

• dizziness

• fainting

• cold hands and feet

• chest pain

• heart palpitations

• anxiety and depression, to name but some.

I have also ironically been judged for not ‘’looking ill’’ even though I am categorised as being disabled.

Have you ever judged someone who looks young or “healthy” sitting in a disabled priority seat? 

If you were to walk past me in the street, you may see my big smile, hear my goofy laugh and notice my nice outfit. Whilst makeup can make you seem ‘’normal’’, appearances can be deceptive. What you won’t see are my tired eyes, my shortness of breath, my medical alert bracelet or all the bruises I have from multiple operations. That’s the thing about invisible diseases - you only see what’s on the surface.

“She made broken look beautiful and strong look invincible. She walked with the Universe on her shoulders and made it look like a pair of wings”.  -  Ariana Dancu

Expiry date

There is no cure for PH.

The same day I was diagnosed was the same day I was told I am dying.

How did I feel in that moment? Relief. Relief in finally having a diagnosis after so long.

I could handle being told there was ‘no cure’. I could handle being told I would be on medication for the rest of my life. But hearing I am ‘terminal’ was when my world came crashing down.

There is no knowing how soon or how aggressive your terminal prognosis will play out. PH is a rapidly progressive, deadly disease and is often the onset of further complications such as autoimmune diseases. Every PH journey is unique to the individual. Although there is no cure, medication may stabilise the condition with the hope for a better quality of life.

50% of patients will die within 2.8 years undiagnosed, a rate higher than many cancers. These are statistics I am already beating.

Happy pills- Drug life

Relying on a concoction of happy pills to help keep me alive, comes with its own bag of surprises.

Side effects I experienced include weight gain, sickness and nausea. I suffer from water retention and bloating. I often have a puffy face and swollen ankles to match.

Every day feels like I’m suffering a full blown hangover without the alcohol! Migraines have become the norm and I am sure ‘Dori’ from ‘Finding Nemo’ is a long lost twin of mine. The desire to sleep whilst battling against insomnia cannot be more cliché. Goodbye my beautiful thick hair, hello bleeding gums.

Sometimes I’m in control of my illness but most of the times it's in control of me. The thing about having to fight to stay alive every day of your life, is that your body is having to over compensate in other areas. Mentally you are still alert but physically you are pushing to fight against side effects of medication and symptoms of PH. I continue to fight back!

Bumblebee

In August 2017, after a year of talks, persuasion and fighting against ‘Bumblebee’, my life was to change forever. I had no choice and my time was precious.

I am currently being kept alive by a portable machine which circulates 24/7 intravenous medication directly into my heart. I like to think of it as being like an Autobot from the film Transformers, half human/ half machine. My chunky CADD legacy pump is fittingly named after my favourite Transformer, Bumblebee.

I live life on a 1m extension wire at all times. I eat with my pump, sleep with it and shower with it. I wanted to be simply me and not be defined my pump. It has changed my physical appearance and has had a negative effect on my perception of body image and the way I dress. 

Whilst I am still fortunate in being able to ‘hide’ my pump through clothing choices, making my disease an ‘invisible’ one, for many PHighters they are wheelchair dependent and/ or require supplementary oxygen at times. I was fortunate enough to get some cheeky holidays in, with the aid of oxygen on aeroplanes, before getting attached to Bumblebee. I was able to enjoy being me, before having to share my body with it.

Living on borrowed time

Things to do today:
                                                                     

1. Wake up                                                                

2. Be a warrior

3. Survive

4. Repeat

Being terminally ill has so many moments of deep realisation. Realising you are dying, not knowing when, realising it doesn’t come without its trials and tribulations and that there is no simple fix. Realising every day you are being challenged physically, mentally and emotionally and realising you are changing forever…

You assume if you’ve been told you’re terminal you have time to prepare for your death, say your goodbyes and be your best for ‘when its time’. But it’s the unknown – it’s a ticking time bomb waiting to explode – and it never gets any easier. 

Beautiful liar

For years I have been thinking about the words I would say to tell people I am dying. When do I tell them? How do I say it? Who do I tell? And the even the sad thought of …will anyone even care?

I kept being ill a secret for many years as I simply did not want to hurt the people I love around me. I wanted to protect them.

Sometimes you have to get lost, to discover the person you really are and you never know how strong you are until being strong is the only choice you have.

And the truth is I became a good liar, I learnt to smile when I felt sadness, my tear dried eyes hid my deepest secret, I covered my scars with makeup and my broken heart carried my pain. This also became a coping mechanism to get me through day to day life, by allowing me to just simply appear…as me.

Living without limitations

I didn’t want pity or for people to change towards me. I wanted to be in control of it and in control of my life, not have people decide what is deemed a terminal person should or shouldn’t be doing or what they are capable of achieving. I wanted to continue living my life without limitations; limitations from myself, limitations from society and from culture. I still wanted to grow and bloom.  

Rejection and ignorance is something I have had to deal with from medical practitioners, friends and family and that’s ok. It’s helped me become stronger, tougher and made me realise it’s OK not be loved by everyone as long as you love yourself. Seeking validation from other people isn’t necessary.

You are born and then you die, but in-between you can do anything you want.

Acceptance

Having kept my terminal illness a secret for so many years has been hard. Really hard. Words cannot explain the feelings and battles fought from within.

I have had to mature and learn life lessons well beyond my years. PH has bought many blessings into my life and I have learned to become a warrior through the life lessons it has taught me. I had to learn lessons which will take some people a life time to learn.

I have gone through this journey mainly alone, with only the support of my immediate family. Hospital visits, operations, hour long consultations and painful flare ups. Living life was a façade and it was challenging to find people who understood the severity of my journey and the reality of it. People who really understood and could see past the façade. Life becomes quality over quantity.

I have always wanted to use my experience of my illness to help other people out there, but the truth is I was scared. Even talking about it now really scares me, it terrifies me actually, after having dealt with it privately for so long. 

I use to worry too much about what other people thought. I hid my health in the last few years for the fear of getting judged and misunderstood…and even rejected. But that happened anyway. I’ve had to learn to re-love myself, know my worth, I am unique and I am who I am…flaws and all. 

Knowing I could have a few months left to live, I have reached a point where I have accepted and learned to live with the reality of my condition and you learn what is really important in life. We get so wrapped up in fast pace of life, we often forget to appreciate and enjoy what we have. Stop focussing on the trivial challenges of life and focus on the beauty of life. You have one shot, so make it count. 

Death needs to be talked about and in the end stories need to be shared. So today I am just simply writing…

The aim of sharing my journey with you all is not to gain sympathy, or to be called brave, but to be a positive influence and be an inspiration. If I can help even one other person out there by raising awareness of PH, chronic/invisible illnesses and organ donation, then I would be content.

In life I have come to learn that you have to - dream bigger than your fears and make your actions louder than your words. 

Am I scared? No. Am I scared for my family and loved ones? Yes. 

Dying doesn’t scare me– living without purpose in life does.

Blessings

I want you to go outside, take a walk, take a big breath of fresh air in and exhale.

Now think how lucky you are – to just simply breathe. 

A daily struggle for most PHighters.

It’s the simple things in life you appreciate and miss the most once they are gone. Be grateful for your body and senses everyday – embrace it, nurture it and love it. Mentally, physically and spiritually - Not everyone is as able or as fortunate in life. Your body is truly your temple, feed it with positivity every day and let that negative shit go.

It’s OK to approach someone who doesn’t look well. We are still the same person. Kind words resonate with us for a long time after the encounter. Prayers from strangers is probably the positivity needed in that day to keep fighting. Especially when it is a battle you are fighting privately. There are hundreds of languages in this world – but a smile is unviersal. Being kind and caring does not cost anything and can have a huge positive influence in what can sometimes be a cold and materialistic world. 

Bloom from within

Being a friend to someone who is terminally ill or suffering from chronic illness is not something you just ‘step up’ to. It’s about being there during the good, the bad, the ugly and the unseen. It’s about understanding and empathy.

It’s about being engaged in someone else’s life, wellbeing and their journey. It’s about staying by their side along all the speed bumps they may hit, ghosting moments they may have, confusion and endless tears they may cry. Even the strongest of people have breaking points. But together, with friends and family, with a team, with love, support and courage, their journey can become a beautiful one with happier memories. 

It’s also remembering the person who is terminally ill is also someone’s daughter, sister, cousin, partner, aunty or godparent. But who is there for the mother supporting her, losing her child every day in front of her eyes? Who is there for the brother supporting his terminally ill sister? 

Every night I tell my family ‘’goodnight, I love you, see you tomorrow’’ and when leaving a loved one goodbyes are replaced with ‘’see you soon’’.

The most beautiful thing is to see a person you love smiling. And even more beautiful is knowing that you are the reason behind it. 

To all the friends, family and strangers out there supporting someone with an illness. I salute you!
You are the real champions.

Pillars of strength

Talking of friends, family and strangers… They say you are only as strong as your support system and this couldn’t be more true. Illness let alone a terminal illness can be a lonely journey. Its scary to even begin to contemplate where I would be if at certain times I didn’t have people to turn to, to hold my hand and wipe my tears.

My team at Hammersmith Hospital, Harefield Hospital and my boss - you have become family. Friends are also the family you can choose and I am lucky to have some fantastic ones. My extended family, some of you have chosen to let me know you are side by side in this journey with me and that I am not alone. Mum, Dad and Bro– you have been my backbone from day one, you give me the courage and strength to be brave. You are my reason I continue to fight and live. To my support system and pillars of strength…Thank you! Even though thank you is just simply not enough.

Fighting to stay alive every day is an ugly battle, mentally, physically and emotionally, but fighting when you feel you have nothing or no one to fight for is a battle already half lost.

The ugly truth

I am currently living on borrowed time. On Christmas day I suffered my second heart attack scare within a 3 month period and was admitted into hospital. Just before New Year’s, I was told that after my second scare I would indefinitely be staying in hospital. Yes, that’s right, I was told I would never be going home again!

My PH is progressing at an aggressive rate. I have exhausted all other medical treatments available in keeping my condition stable and my outlook now is not looking good. My doctors did not want to send me home in the fear of me having another heart attack scare/ blackout and paramedics not being able to reach me in time. I was fortunate to have my family around me both previous times. Third time I may not be so lucky and they were not willing to take that gamble. Doctors were preparing to  put me on life support.

Ring Ring/ The phone call

I had lengthy discussions about my future life with doctors and my family. Fortunately, I qualify for lung transplant. However, many are unfortunate in not being able to have this option due to other health complications in addition to their PH.  Whilst others will sadly die, waiting for organ donations as their PH is too aggressive.

I am currently active on the waiting list to receive a double lung transplant and will be on life support/ ECMO for some time to allow my heart to hopefully recover instead of also doing a heart transplant. I am just patiently and eagerly waiting for that call to come any day now, ’’we have your new lungs’’…

Miraculously after some weeks in hospital, my condition stabilised. Something I was not expecting. I was allowed to return home, to enjoy quality time with my loved ones in my own comforts. The doctors also wanted to give me a break from hospital as it will soon become my second home for a few months post transplant for recovery and rehabilitation. Goodbye bedroom, hello boot camp!

Organ donation

If you had a chance to save 8 lives, how quickly would you do it? 

With the current legislation, you have to actively opt in to donate. A few minutes of your time to fill out a form could save a suffering family, turn into a joyous family.

Everyone dreams of the day they will get married, have a family and whatever else it may be in life. No one thinks about the day they will die. You never expect the unexpected, until the unexpected happens.

By sharing my experiences, I hope to create a safe place where I can enlighten people on what it is like to be terminally ill in your 20s, look physically fine but to suffer from an invisible or chronic illness.

Death isn’t easy to talk about and we need to be having open discussions. Death is inevitable but no one should have to go through it alone. There is nothing lonelier than feeling unloved in your time of need.

You could change somebody’s life. You could be somebody’s second chance.

Facts:

• 22 people die every day while waiting for a transplant.
• 1 organ donor can save 8 lives and change the lives of more than 50 people.
• Almost anyone can be an organ donor, regardless of age or medical history.

Click on the link below to register for organ donation, it takes 3 minutes:

https://www.organdonation.nhs.uk/register-to-donate/register-your-details/

Power of the mind

I strongly believe that one of the main things that has got me this far, in my PH journey, has been my positive mind and outlook on life. We have to remember to not only nourish our body but also our mind and soul. It is important that your body and mind work as one.

It is easy to slip into emotional lows, but my sheer determination and will power to not let my illness get the better of me has kept me going. There are many things in life to be grateful for, there is always someone less fortunate and every day I started counting my blessings. The happiest people don’t necessarily have the best of everything, they just make the best of everything that comes their way.

You are confined only by the walls you build yourself. Fear has two meanings; forget everything and run or face everything and rise. Face your fears and do it anyway. Being termed ‘terminal’ can be easy to just give up, but I was adamant that my illness is not going to define me. I continued to travel, work, challenge perceptions and be me! I was not going to lose myself.

Embrace your imperfections, practice being kind to yourself and others, surround yourself with positive energy. I had to be courageous for myself and my loved ones. Sometimes courage is that little voice at the end of the night saying ‘’tomorrow will be better’’.

I want to shine brighter than my illness.

Pain is temporary but quitting lasts forever. Tough times never last but tough people do!

Legacy - I’m a PHighter

Suffering from PH has opened my eyes, tested the strength of friendships and challenged my perception of love. I’ve loved and I’ve lost. I’ve gained new friends. I’ve had strangers pray for me. I have laughed so hard until I have lost weight and I have cried furiously until there is nothing left.  I have no real resolution other than to continue embracing and loving life, to keep smiling, to have faith in people and in God, to love unconditionally without reservation because that’s what keeps us all going.

Here’s to fighting PH head on and I’m going to continue winning. My secret is out and here’s to chasing dreams and living life. New friends, new journeys and new memories with the people I love and who love me! PH I am ready for YOU – I’m PHighting back!!!

The greatest lesson I have learnt is to hold the people dear to you closely and to not only tell your loved ones at every opportunity how much they mean to you – show them. No gesture is ever to big or small. Love all the people God gave you because you truly never know when God will need them back. In the end all that matters is how deeply you loved and how deeply you were loved.

Rose tinted glasses

My illness does not define me, but is an extension of who I am.

Writing my will in my 20s was not something that was easy. You cannot choose the cards you are dealt with in life. But you can choose how you play them. That’s the thing illness has no form or creed. It doesn’t wait for anyone. It can happen to you at any age, in the midst of your career or when you’ve just started a family.

I urge you please do not ignore any symptoms you may be feeling, no matter how trivial they seem or even if you think they mimic signs of anxiety and depression. A lot of symptoms are overlapping in many conditions.

Your health is truly your wealth, time is gold and your family are priceless. These really are the true riches in life. 

Rare Disease Day

I choose to tell my story today as today is Rare Disease Day and my time on earth is precious. It has taken a lot of courage for me to make myself vulnerable to you all.

Please…Help me raise awareness for people like me, fighting battles you know nothing about, for the people whose lives depend on organ donation and for the angels who will sadly die until a cure is found for Pulmonary Arterial Hypertension!

We may be a few in a million – but our lives matter! Will you join me on my journey?

• Like and share this blog to create awareness

• Join the organ donor register and help save lives

• Donate to PAH UK to continue research to find a cure 

It takes 3 minutes to sign up to organ donation. Drop me a <3 ‘heart’ in the comments section once you have done it!

…individually we are one drop. Together we are an ocean.

Love,
Kinari  –x– 

For more information, please visit:

http://www.phauk.org
https://www.bhf.org.uk
https://www.organdonation.nhs.uk
https://www.rarediseaseday.org