Custom Text

Tag: organ donation

Get Me To 21

Even if you are not directly part of the Rare Disease Community, I am sure that you have heard of Jenna Lowe.  Perhaps you were even lucky enough to meet this young lady.  Maybe you have visited her website, & became an organ donor when you heard from someone waiting for her lungs how dire the situation is.

Gabi-Lowe2-crop

Gabi & Jenna Lowe

Jenna was an inspiring young lady who never allowed her diagnosis to hold her back.  She lived life to the fullest, encouraged & inspired others, & was constantly striving to create awareness around organ donation.  You see, Jenna had Pulmonary Hypertension.


68482826_10157462949449819_9207070698936205312_n

Jenna was young, bright, beautiful and articulate. Lead SA’s Youth Hero of the Year in 2015, her death was mourned by thousands of people whose lives she had touched. During her short but full life, Jenna and the Lowe family raised much needed awareness around this rare and devastating disease, highlighting the dire need for access to medication and organ donors locally. Although desperately ill, Jenna became the face for organ donation in South Africa through the hugely successful #GetMeTo21 campaign in which she invited all South Africans to attend her 21st birthday celebration by clicking on a link to become an organ donor. Tragically Jenna died three months before reaching her milestone.

Brilliantly written, riveting in all its terrible truth and pain, in this brutally honest memoir Gabi Lowe shares her family’s desperate fight to save Jenna’s life. Despite their tragic loss, Get Me To 21 will inspire you to believe that the ability to face even the darkest and most unimaginable lives deep within us all.

Author: Gabi Lowe studied a BA before embarking on a successful career in media and marketing. In 2011 she was catapulted into a totally new world, that of rare diseases, big pharma and transplantation, filled with massive challenges, learnings, losses and love. Gabi is now a sought-after life coach, facilitator of workshops on emotional resilience and inspirational speaker. She lives in Cape Town with her husband Stuart and daughter Kristi.

(source:  GetMeTo21)


When I heard that Gabi Lowe was coming to Joburg for the launch of her book, I knew I had to be there.  #RareWarrior friends would be there, as well as the CEO of Rare Diseases SA.  Jenna’s story had touched me & I was desperate to learn more about this girl who has left such a footprint on the world.

I had tissues at the ready, & appreciated the courage of the entire Lowe family for allowing us a glimpse into the battle they went through as an entire family.  Gabi read from the book for all of us (this is where the tears started), & told us the hard truth about the lack of resources & awareness in South Africa.  There were fellow PH patients in the crowd, as well as another mum who has lost 2 of her children to this dreadful disease.  When I saw Shaakira, my heart broke – I had known her daughter & here she was supporting her “family” & standing up in support of the Lowe’s.  They had leant on one another throughout their journey’s & now they are both grieving the loss of their precious children – how is that fair?

25188977_1561995850546569_6461156400459375528_o.jpg

Humayra Bodhania


Following the launch, I needed some time to process what had been discussed before beginning the book.  I knew it would be a tough one to work my way through, & emotionally I did not know if I was ready.  Realising that a lot of this fear stemmed from the fact that I am relapsing & fearful of what this means for me & my family, I knew I had to just suck it up.  This is a book of bravery, a book of loss, a book of pure love.

Within 2 days I had finished the entire book.  I literally could not put it down, except to clear my head for a few moments when it all became too much.  I felt completely drained as I finished the last page & I was amazed at the strength of the Lowe’s.  Jenna’s story needed to be told, & needs to continue to be shared.  This book was honest & raw, & included excerpts from Jenna’s actual diary.  It showed the truth of what it is like to have a Rare Disease & the fear of the unknown. It showed the hope of a miracle, & the emptiness that follows a loss that cannot truly be explained.  It showed courage.


This book has changed my life – for the better.  And it is a book that will keep Jenna’s legacy alive, whilst continuing to touch everyone who reads it.

The book is available online, or from local book stores in South Africa – I got mine from Exclusive Books at the event itself, & have seen it many times since then.

I leave you with the song that Jenna wrote, & her sister Kristi performed.


Read the book, join the Facebook Group, & sign up as an Organ Donor.  Be the change.


 

Tell

Last night I had the honour of attending the launch of Tell in Joburg.  I was really excited for this as I met one of the founders at RareX earlier this year, & have been following her on social media for some time.  I have been a registered organ donor for a couple of years through the Organ Donor Foundation of SA, & have always made my decision known to my family & doctors.

Tell stands for Transplant Education for Living Legacies & is educating South African’s about organ & tissue transplantation.  They brought to our attention the fact that the most important part of donation is conversation – meaning that we need to TELL others about organ donation; let others know when we are an organ donor; & share any posts on social media when we see that someone is needing a transplant.  Who knows if that could be a friend or family member of ours that we are needing to save, or if it could even be us?


Photo 2018-10-16, 18 18 19

Tell is encouraging us to #tellyourtribe in order for them to provide consent for when you are unable to; #tellyourteam i.e. hospitals & donation teams for referrals or to help a potential patient; work together in collaboration to get positive statistics; & educate others to create awareness.


Did you know that even if you have registered as an organ donor it doesn’t necessarily mean that your organs will be donated if you pass away?  Ultimately the decision is left up to your loved ones who have to say “yes” or “no” to the transplant team – they are already trying to process the loss, & if they do not know if you are wanting to donate your organs it is difficult to try make this decision in such a time.

This slideshow requires JavaScript.


The ultimate dream is to make organ donation mandatory in both the public & private sector – this means that people would have to OPT OUT of donating their organs, rather than having to necessarily opt in.  This is an absolute ‘head in the clouds’ dream, but if you don’t dream it you can’t achieve it!

During the event I also discovered that Tell has arranged closed support groups on Facebook for both donor families & recipients so that they can travel this journey together with others who can offer advice & support; & they can work together to process this big change in their lives.

Photo 2018-10-16, 18 16 20


Dr Williams (Critical Care Specialist from Milpark) & Dr Wadee (nephrologist from Wits Donald Gordon Medical Centre) were speakers at this event.  It was so interesting hearing about this topic from a healthcare professional’s point of view.

44144629_322582805197147_455614889583443968_n

They reminded us about the real heroes in life.  The donors give a gift of a second chance, or in many cases, the chance of the recipients first real life.  This gift is given freely, & is possibly the greatest gift of all time.  However we also need to remember the recipients & the fact that they are heroes too.  Having a transplant is not as simple as getting a tooth pulled at the dentist.  It takes extreme bravery, trust & faith to undergo something like this; & they are the true heroes amongst heroes!

Did you know that there is such a thing as a living donor?  You can donate your kidney or lung, or part of a liver whilst you are still alive.  Why wait until you die to make a difference?  Who knows if you could save the life of a child, a mother, a friend, a brother…  There are also brain dead donors – however this takes enormous effort from the ICU side, & unfortunately we often suffer from ICU rationing in SA.  The body is given artificial respiration. This allows the heart, lungs, liver, pancreas, kidney & small intestines to remain suitable for transplantation.  Lastly there are non-heart beating donors which is as a result of cardiac arrest.  The organ retrieval needs to happen quickly after this type of death otherwise they will not be transplantable.


Please follow this amazing charity on Facebook, Instagram & Twitter.  Get involved, create awareness, & spread the word.  Who knows if you or your loved one may need a transplant to save your life some time in the future!

We, as run-of-the-mill human beings, need to live better & healthier lifestyles.  Who know who we could save because of this.


44337374_322582748530486_4783341924079632384_n
MORE ABOUT TELL…
Life is the best gift you can give. It’s why Tell helps educate South Africans about organ and tissue donation. Tell (Transplant Education for Living Legacies) was created with heart, for hearts (and other organs).
Two of the three founders are speaking from first hand experience, having received life-saving lung transplants. This not only gives them a second chance at life, but it places them in the unique position to make a difference in the transplant community. Their experience allows them to identify various barriers to organ transplantation and it is our mission to solve as many of these obstacles as possible.
One of the biggest problems we face in South Africa lies in the process of identifying and referring potential donors. South Africa already has a shortage of organ donors, and the lack of education around the situation is only making matters more difficult. It is also important to note that in South Africa, the donor’s family has the final say in whether or not organs are permitted to be donated.
Tell’s goal is firstly to help educate both potential donors as well as medical healthcare professionals, and break the stigmas and misinformation around organ and tissue donation.
Secondly, we want to encourage anyone who wants to donate their organs to TELL THEIR TRIBE of their wishes to be an organ and tissue donor. Awareness is key, and we firmly believe that the most important part of improving organ donation environment is conversation.
Our mission is to end the waiting list by changing and leading the conversation around organ and tissue donation in South Africa.
error

Enjoy this blog? Please spread the word :)

%d bloggers like this: