“It is so important to discuss organ donation and share your wishes about it with your family”
In our final guest blog for PH Awareness Week, transplant recipient Kath Graham has this important message for everyone.
I was diagnosed with end stage Idiopathic Pulmonary Arterial Hypertension in 2010. I was immediately placed on a heavy regime of drugs, including intravenous drugs and was referred for a heart and double lung transplant within months of diagnosis. I waited two years on the transplant list before I was lucky enough to receive my gift of a new life.
It was all a massive shock and I made many adjustments to my lifestyle including giving up my career as a teacher. I lost my independence, but was happy to use a wheelchair so I could enjoy precious time with my family while I waited in hope for my transplant.
Since my transplant, life is very different. I’ve been able to celebrate and enjoy so many family milestones that I didn’t dare dream I’d see. Rob, my husband, and I have been able to travel again and have visited many places, including celebrating our 25th wedding anniversary travelling on the Orient Express, which had always been a dream of mine.
I’ve been able to see both my daughters, Sarah and Rose, graduate and build their careers and Sarah get married. I’ve now a young grandson Freddie and another grandchild on the way. There’s always so much to look forward to. Transplant has enabled me to share many special moments with my family.
I’m an avid campaigner to raise awareness of organ donation and pulmonary hypertension and since my transplant have written and published a memoir, as I’d always wanted to write a book. I didn’t ever think it would be a book about these subjects though! It’s called ‘Life is for the Living’ and is available on Amazon. It aims to help others going through similar difficult circumstances and to promote these causes dear to my heart.
I have recently celebrated five years post heart and double lung transplant and it’s still shocking to know that things haven’t altered since I waited for my transplant all those years ago. Three people still die each day while waiting on the transplant list. There is growing confidence that this may change with the new ‘opt – out system’ the government is planning. I welcome any system that may improve the number of organ donors, but I do believe the situation is much more complex than this.
Since I started on my transplant journey seven years ago, the issues concerning ‘family consent to organ donation’ haven’t changed. Families still have the right to override their loved ones wishes, even if the potential donor is a registered organ donor. Almost a third of families still say ‘no’ to organ donation. Sadly the proposed ‘opt – out system’ won’t change this. This is why it is so important to discuss organ donation and share your wishes about it with your family.
My donor family told me they knew that’s what my donor’s wishes were and so the decision to donate was an easy one. I will always be forever grateful to them and my donor for giving me such a precious gift and a second chance at life and I will always advocate to ‘have the discussion’ and ‘share your wishes’ when promoting organ donation.
The more people we have openly discussing organ donation, the more it may encourage people to register as organ donors and the easier it may be for families to say ‘yes’ to organ donation.