Woman reveals how organ donation saved her life

At the end of 2018 Hannah Sharma thought she had a chest infection, but after a few weeks she was diagnosed with heart failure and in need of  a heart transplant.

She said: “A few weeks in it felt more like Norovirus and I spent two weeks in my flat by myself with friends dropping food parcels to my door.

“After visiting the doctors and being sent home with antibiotics three times and a week spent at my mum’s house I decided it was time to go to the hospital. My breathing got really shallow, I had to sleep upright because every time I laid down I would choke (because of the fluid that was building up around my organs).

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“The hospital kept me in overnight and told me that I was in heart failure. They said that after a few weeks rest and with tablet medication I should be able to go back to work and live a relatively normal life.”

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After taking the medication she crashed immediately; her body unable to tolerate it. She became bed bound and after a few days the decision was made to send her to a specialist heart and lung hospital in London.

Hannah had no family history of heart disease and it was diagnosed as potential Dilated Cardiomyopathy.

From first getting ill to her heart transplant took four months.

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Hannah, 29, said: “For two months I was prodded, poked and tested in every which way possible to work out what was going on and why. In this time I picked up sepsis and MRSA and had a small stint in intensive Care.

Hannah in hospitalHannah in hospital
Hannah in hospital

“I was sent home in March to see if I could live on tablet medication. I couldn’t. Two weeks later I was back in for the ‘long haul’ and almost instantly put on the urgent transplant list. This was the only option for me now. I needed a new heart urgently.

“After a couple of failed calls (one heart didn’t stop quick enough and one heart was too small for me) I received my call six weeks after I had been listed. The week before I was given life I had picked up another infection and friends have said to me since they thought I might not make it through that week.”

Hannah, who lives in Mayfield, East Sussex, said that her recovery had been better than she could have ever imagined.

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“There can be so many ups and downs in transplant and I feel extremely lucky to have had so many highs. I was discharged just two weeks after surgery and everything has just been getting better since then.”

New figures published in July by NHS Blood and Transplant (NHSBT) show that last year (2019/20) 1,580 people in the UK donated their organs after they died.

This allowed 3,760 patients to have the organ transplant they needed, including 55 people in Sussex.

There are more than 6,000 people in need of a transplant in the UK with 99 of these patients living in East and West Sussex.

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Sadly, in Sussex in the last five years, 44 people died before they received the organ they desperately needed.

On May 20, the law around organ donation in England changed to an ‘opt out’ system. This means that it will be considered that you would be willing to donate your organs, unless you have opted out, are in one of the excluded groups or have told your family you do not want to donate.

It is important that people know that you still have a choice and family members will still be consulted before organ donation goes ahead. Families are more likely to support your organ donation decision, when they already know what you want to happen.

Following the change in law, NHS Blood and Transplant is urging families across England to talk about their organ donation decision. Knowing what your relatives want, helps you support their decision at a difficult time.

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More and more families are saying yes to organ donation but there is still an urgent shortage of donors.

Anthony Clarkson, director of organ donation and translantation for NHS Blood and Transplant said: “Even now the law has changed, families will still be approached before organ donation goes ahead.

“So it remains so important to talk to your families and make sure they know what you want to happen.

“Register your organ donation decision on the NHS Organ Donor Register and tell your family the choice you have made. If the time comes, we know families find the organ donation conversation with nurses or medical teams much easier if they already know what their relative wanted.”

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Hannah knows the age and gender of her donor and is able to write to their family to say thank you.

“It is up to them if they choose to receive and read the letter and if they want to write back to me.

“This has been so hard for me from day one which is why I haven’t written the letter yet. Thank you doesn’t seem enough. I want to say how sorry I am for their loss and how I wish they didn’t have to lose their loved one for me to be able to live.

“I would say thank you for giving me this chance at living again. I would want to say so much more but what do you say to someone who you literally owe your life to?”

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After her operation Hannah says her life has been slightly less full on, before she travelled a lot but after the operation, and because of Covid-19, she has been spending a lot more time with family and friends and her sausage dog called Huey .

She said: “I’m completely grateful for everyday I get to live.

“I am in awe of my donor and her family who gave me this life and I try not to take anything for granted anymore. I still plan to live a life full of laughter and enjoyment and fun.”

Before her operation Hannah says she used to be smug about how well she always was, never taking sick days off work, or having cancel plans because she was ill.

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“If this can happen to me, it really can happen to anybody. I rarely even got the common cold. I thought I was invincible. I was so unbelievably wrong.

People need to have the conversation with their families because even though the law has changed the final decision comes down to your family.

“If they do not know that you are happy for your organs to be given to someone else, someone like me, they can say no. And then what? Your organs will go to no one.

“Someone like me will be waiting in hospital and might not get their life saving transplant in time. If my donor and her family didn’t allow me to have her heart, I might not be here now. It could be anyone.

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“It is the most selfless, awe-inspiring and beautiful gift any one can give.”

Find out more and register your decision by visiting NHS Organ Donor Register at www.organdonation.nhs.uk and share your decision with your family.

For Hannah’s blog, visit travels-tea-transplants.com

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