Today, my husband and I spoke at a nurses education course at the hospital where he had his liver transplant.
We are part of a group of liver transplant recipients, and their partners, who regularly speak at events such as this…it is an honour to know these fabulous people who we wouldn’t have met if we hadn’t all gone through the transplant process.
You would not know by looking at these guys, that they have all had liver transplants, and that none of them would be alive today if they had not been lucky enough to receive a donor liver…
So why do we all feel that it is so important to share our experiences?
Because by sharing, we can give an awareness of what it is like to be a patient in theatre, ICU and in the ward, especially when having a transplant.
And it also gives a chance to give the often forgotten carer’s point of view…
Occasionally at these courses, we come across someone who had nursed Jas at some stage along his journey…they usually remember that he used to wear pajama pants with Vegemite jars on them…and they always say how fabulous it is to see what was once a bright yellow, critically ill patient looking so alive and well again.
We also share our story wherever possible in other forums too…for example, our story was recently featured on Transplant Australia website.
What we particularly like doing is talking with those still on the “other side”….those who are stuck in that seemingly endless circle of illness, tests and procedures as they wait for the call.
It can be a stressful and depressing time for both the patient and their loved ones, so we are able to give them a little hope that you can get through it…that there are successful transplants, and life can return to some resemblance of normal again.
Personally, we found talking to post transplant patients when my husband was still waiting so valuable..so we feel that it is part of making it to post transplant and back to living again, is to also impart what we learned as those before us have.
It does break my heart to see others struggling and wish it was possible that every one on the waiting list will get a donor liver…but reality is, many will not make it…we heard today that the Liver Transplant Unit has lost four patients recently…apparently one was on the waiting list, and three were post transplant.
It is a major reality check when we hear sad news like that.
But there are many good stories, and thankfully, my husband is one of them…in fact, he is almost up to his three year post transplant anniversary….a date which I never thought would happen when things were looking really bad.
However, that anniversary will be reached, and hopefully many, many more to follow…and we will continue to take every opportunity to talk and share our story!
If you would like us to speak at an event about organ donation and our experiences, please feel free to contact us for details.