Today, the first day of organ donation week, we hear from Michele McGarry from Craigavon who received a heart transplant two and a half years ago. Michele very kindly agreed to share her story with us so that people could hear first-hand how organ donation has transformed the life of someone locally. Michele stresses the importance of signing the register via www.organdonationni.info and she wants everyone to take two minutes to talk to their family about their wishes. This is Michele’s story:
“Before my transplant, I was so desperately ill. I was a permanent blue colour, with absolutely no energy. I could barely breathe, whether standing, sitting or lying down. I struggled to even hold a conversation as I was so breathless and I slept for about 22 hours a day, even struggling to walk to my ensuite toilet. I spent my last Christmas before transplant in bed, unable to get up. I had an awful paranoia that everyone would judge me and think I was lazy. If my family or friends wanted to see me, they had to let themselves into my house and come to my bedroom; that’s when I was at home. For the majority of time before my transplant, I was a hospital inpatient, constantly having operations and procedures and medical interventions; when not having these, I was just not well enough to be at home. I never had more than a week between lengthy hospital admissions and to be honest I preferred being in hospital as I felt safer there. You know the saying ‘I feel like I’m dying’? Well I was dying and I felt every bit of it.
I had cardiomyopathy, inherited from my Daddy who died two years before my transplant, aged 55. I am currently 2 and a half years post-transplant, without which I would most certainly be dead. I am so grateful to my Donor and Donor family for their amazing courage, generosity and compassion. They chose to save my life at what was probably the most tragic time of their lives. They have helped me gain an extra two years with my family and friends and we have made some wonderful memories in this time.
Whilst, I currently have more hospital appointments than ever, the fact that I have not been an inpatient since March 2020 (18 months!) is probably my biggest achievement since transplant! That might not seem a big thing to most people but for me it is huge. The little things for me are the big things that matter most, and I appreciate them. Before transplant I was unable to make any plans, for various reasons. Now I feel more confident to make plans – I may have to cancel at the last minute but I am more confident to make plans as there is more chance I can now make them.
I have a new found appreciation of life and take joy in the small things, nature – especially trees and music! Spending time with loved ones has taken on a new meaning and laughter comes to me much easier. Whilst I am not out climbing mountains or running marathons, I currently feel better (for the most part) than I did before transplant. I still have bad days but before the transplant I only had bad days. I now have pink lips the majority of the time, which people always comment on! Regardless of how much extra time I get, I will be so grateful for each and every minute.
I have formed amazing friendships with other transplant recipients, some of whom I now class as my closest friends. I would never have chosen to go through what I did but I am grateful I was given the opportunity to meet the best people that I would never have known otherwise.
I have been lucky enough to be involved in a few organ donation events. This is important to me; I feel a duty to raise awareness so that others may be able to have the same opportunity so generously gifted to me. Many people I know have died whilst waiting on their transplant. One of my best friends (Jemma) tragically died last October, a few months after her 27th birthday, whilst waiting for a heart and lung transplant.
The only details I was given about my Donor was their age and sex. Similarly, Donor families will only be given limited information about their transplant recipients. Any contact between recipient and Donor family will be done with the consent of both parties and carried out professionally through their respective transplant co-ordinator and specialist nurse in organ donation.
I have written to my Donor family a few times but have not received a reply, which I completely understand and am OK with. From my perspective, I just want them to know how grateful I am and that I have not and will never forget what they did for me; they saved my life and I will be eternally grateful! Thank you will never be enough.
I am so grateful to all of my friends’ Donors and their families. I am so grateful to all Donors and their families and the NHS for making organ donation possible. I know that all of my transplant recipient friends, me (and our families) could not be more thankful to our life-saving Donors and their families.
Even with the opt-out system coming in for organ donation, donation will never be considered without the consent and blessing of the Donor’s family. Families are more likely to agree to organ donation if they know that their loved one wanted to be a Donor so it is very important to share your wishes with your loved ones.
What I would say to anyone considering signing the Organ Donor Register is “imagine if the last thing you did was save a life, or several! What an amazing legacy!” One Donor can save up to nine lives and improve the lives of 58 people. I sincerely hope that when my time comes, I am able to do this for someone.
I have met a few Donor families (not my own) in the past couple of years and they have always told me that it brings them a great sense of comfort and pride to know that their loved one has been able to save lives.
Donors and their families truly are life saving HEROES! Were it not for our Donors and their families, we would not be alive today.
If none of that has persuaded you to sign the register and share your wishes with your family then I’ll leave you with a fact that just might – you are six times more likely to need a transplant than to be a Donor!”
Thank you to Michele for sharing her story with us. Later this week we will hear from Gerri who, coincidentally, lives five minutes from Michele and also received a heart transplant! Here is Michele introducing Gerri:
Gerri and I live five minutes from each other. We have always had people in common. For example, my sister went to school with her step-son and her best friend’s son is best friends with my nephew. So I had always known of her. Before my transplant, using our connections, we arranged to meet and Gerri came to my house. We got on like a house on fire straight away! Gerri was the first transplant recipient I had ever met or heard of and was extremely helpful in answering my questions. At this point I had already refused to go on the transplant list, being very frightened, as I am sure anyone could understand. Gerri is great at ‘tough love’ and told me I needed to go on the list now before I died and from the state of me she said she did not think that would be far off!!! I appreciated this and it was one of the factors that pushed me to going on the list, after which I got my new heart very quickly!
Gerri and I have remained close friends and are both always there for each other. I am so grateful I ‘found’ her. I remained in the Freeman Hospital in Newcastle upon Tyne for six months after my transplant. On my return home, one of the first things I did (about a month later), was go to Gerri’s wedding.
Thanks to organ donation, Gerri was able to marry the man of her dreams.
Thanks to organ donation, I was able to go to their wedding!”
Read Gerri’s story here