Please note: the following views are ours, based on our own experiences. This post was rather difficult to write as we don’t want to offend or upset anyone…please be assured it is just based on what we observed and felt.
I always thought that organ donation was a positive process…something good coming from an event which is often very tragic.
But recently, we were invited along to a forum which made us very aware that not everyone has the same view.
I am not at liberty to share what the forum was about or who attended however, it was a combination of donor families, recipients and staff who are involved in the organ donation process in some way.
And as discussion started, it quickly became clear that there was a lot of anger and resentment from some of the donor family representatives.
Make no mistake, there were some tragic stories…totally heartbreaking…
We have lost loved ones too, and we totally understand that there was so much grief and sense of loss.
But what shocked us was the lack of understanding and compassion from some on the donor side towards recipients….and the very high expectations.
It does reassure me somewhat to know that this was a small selection of people, and therefore cannot be said to be indicative of the wider community…but it is confronting to find that it does exist and by some who are involved in working in the community.
Organ donation is a very complex process on many levels…you have grieving families having to deal with so much, who then get asked about organ donation, through to very sick patients, desperately waiting for the that life saving gift.
There are high emotions on both sides so perceptions and common sense can be clouded by circumstances.
For those new to this blog, we have experienced the process from the recipient side as my husband received a donor liver almost five years ago…you can read his story here.
To put it simply…your loved one gets sick….very sick….and then they have to go through a very strict selection process.
Hopefully, they are then able to get onto a waiting list, however some don’t even get that chance they are not deemed suitable.
And then even if you do make it onto a waiting list, there is no guarantees…it is all about trying to stay alive as best you can.
The wait can be days, weeks, months….even years….and sadly, sometimes never.
We knew of at least three people who died waiting while my husband was on the list.
And in some cases, recipients don’t even have time to prepare for the whole transplant concept as they get sick so suddenly….one minute they are healthy, next they are waking up with a donor organ.
My husband waited 14 months…and only had a few weeks to live if he hadn’t been one of the lucky ones to get a donor liver.
What we heard the other day from the donor side indicated that there was no concept of what recipients actually go through.
That their lives are also turned upside albeit in a different way…and that they have received a gift for which they are forever grateful.
I was surprised to find that there was the view that “well, you have got my loved one’s organ, things are all good for you whereas we are grieving”.
There was no concept of the recovery, which is often a very long, tough road, physically, emotionally and mentally…
Every recipient’s recovery is different…these are patients who have been very sick and some transplants take much longer to get back to good health.
Some will always struggle with further health issues…they may take months to even get out of hospital…while others such as my husband, will make a full recovery and are able to return to living a normal life.
But there is always ongoing medication, maintenance and monitoring…a transplant is not a cure as such…you are attached to your transplant unit for life.
For example, this is what keeps my husband alive for three months…
From some of the donor families in attendence, there was a strong expectation that something was owed, although exactly what that something was, there was no definite answer.
Because everyone’s experiences were different…which meant their views were different.
But there was a definite divide for some…so much so that it was said that in hindsight, they would have said no to organ donation.
As a recipient family, that is both heartbreaking and frightening to hear.
What I would love to know was whether the loved ones of these people were registered organ donors…if they had been, would there be less anger and resentment about it all?
About 6 months after my husband’s transplant, we both wrote letters to his donor family…we wrote at that time because my husband was doing well, and we were able to give a positive report on how things were going.
The current process of communication is all about keeping both parties anonymous, with privacy being paramount, however both donor families and recipients can write whenever they want to.
But not everyone does and there are so many reasons why letters aren’t written…some don’t feel worthy, others struggle with the right words, others just want to put a distressing experience behind them and move on.
For us, it was one of the most difficult things we have done…but we had to say thank you and hopefully we gave some comfort to that family…
Some months later, we did receive a letter back…a generic one written to all the recipients of the donor.
And that was enough for us…we now had a positive image of who that person was and have no desire or need to meet that family.
We will write again, especially with an anniversary coming up, and there will always be a connection, but we like the mystery.
However, as the day went on we realised that some families had very strong wishes to meet with recipients despite the fact that this is not allowed in Australia.
And in some cases, this desire came across almost as arrogance, with no thought or compassion to what a recipient may have been through.
It was even said that the recipients owed them…this creates such pressure and expectation!
There was no thought that perhaps the recipients had experienced their own trauma and were taking time to recover.
Some had even gone looking for the recipients…and found them via social media and news articles.
To be honest, if we somehow found out my husband’s donor family had been there, we would have run a mile…it was that uncomfortable for us.
What seemed to be forgotten is that their loved ones did not die for the recipients…that was their life journey.
Visit any post-transplant clinic and talk to the recipients…they don’t need to be told to feel grateful…believe me, they know!
And for some, it is a great weight on their shoulders.
Just as donor families understandably can struggle with grief and loss, recipients can also struggle with the experience of transplantation and all that it involves.
There are two sides to every story…and every single one is unique!
There was also something else that became very clear during the day…the lack of knowledge about organ donation in general.
That the majority who spoke had even not considered the idea before they were confronted by the potential death of their loved one….or needed a transplant.
Which makes us realise just how important it is to be able to share experiences and information about organ donation…on both sides…to the wider community.
And to encourage people to talk about it with their family and friends.
Speaking to groups and schools is something which we have been doing for a couple of years, and we really enjoy doing it.
We are able to share just how important and life changing organ donation can be, while also providing information on how the donor process works.
Personally, I have always known about organ donation and supported it, long before I met my husband and traveled down the transplant path with him.
We have lost people close to us, but sadly no-one has been able to become organ donors due to various issues, so although we have known about what happens, we have not experienced being a donor family.
The scary fact is that less then 1% of people die in such a way (in Australia) that organ donation can be considered…you are more likely to need a transplant then become a donor…which is why a positive view is so vital.
All in all, the day was quite stressful for us, and I have to admit I was relieved when we had to leave an hour early.
Did the forum work?
I think that more questions then answers were raised, however it did emphasize just how complex any aspect to do with organ donation is.
It is very obvious that one solution to an issue will not suit everyone….and in regards to the topic that was in question, maybe the system already in place is the best, albeit with some improvements.
Would we take part again…probably not.
Organ donation is a very important topic to us and one we are more than happy to talk about..but not when discussion is dominated by the strongest voices who are so blindsided that they cannot see the larger picture.
We can only hope that everyone left at the end with a better insight into both sides, and that in itself is a big positive!
Because without organ donors, there would be no transplants and thousands of potential recipients would never have the chance to live again!
Do you have a organ donation story to share…please add to the comments below!