Being on a waiting list for an organ donor can be somewhat surreal…some patients are only on the list for a day or two, some for a few months, others for years.
And it is even more surreal when you are waiting for a cadaver organ (ie from someone who has died).
I can’t begin to tell you how many times we were asked “so when is the transplant going to happen”?
The answer is basically who knows…you just have to put your trust into the transplant staff, and wait…and wait…
Today, I thought I would share with you my husband’s experience of being on the waiting list for a donor organ…a very much needed new liver.
To track back a bit, it is actually not that easy to even get on the waiting list for a new liver…and I am assuming the process would be the same for other donor organs.
You don’t just get really sick and one day you are added to the list…there are many stringent tests and assessments that have to be done first.
Then your overall case will be discussed by the specialists…only then will you be added if you pass all the requirements.
And once you are on the list, it doesn’t mean you remain on there until you get a new liver…you might become too sick to have the transplant, you may get a bad infection which postpones transplantation, you may be assessed as being unsuitable due to behavioral issues….
The list shifts everyday…patients are moved to the top as priorities, and others are moved down as their condition improves.
In my husband’s case, the road to being listed involved a week of heading into the hospital each day to be prodded, poked, blood taken, meetings with social workers, psychiatrists, pastoral care…and thankfully, he passed with flying colours.
Which basically means he was sick enough that he wouldn’t survive without getting a new liver, but he was strong enough both physically and mentally to survive the surgery….a very delicate balance.
I remember the day he was activated onto the list like it was yesterday…we were called into Clinic 5 which is where the pre and post transplant clinics are held and is usually crowded…except on this day…there was only us in the waiting room.
We were then called into see the Head of the Liver Transplant Unit, Prof Bob Jones (the most amazing man I have ever met) who carefully went through the risks of liver transplantation, and what we could expect in the potential weeks…months…years…ahead on the waiting list.
Forms were signed and it was done….we were now on full alert, and had to remain in contact with the Liver Transplant Unit at all times.
Thankfully with mobile phones, it meant it is easier to always be contactable…in the early days, it was done using pagers and frantically ringing land lines till the patient/carer was found.
We have heard some crazy stories of how the staff had to track down their potential transplant recipients…one included sending police to a shopping centre, to find the patient and get them to the hospital ASAP….and I can report they did and that transplant went ahead.
I can’t even begin to explain what it was like to be waiting 14 months and having your heart race every time the phone rings, especially if the Caller ID was familiar…it was like living on nerves all that time, and this is on top of rushed trips to emergency, specialists appointments, tests and clinic visits.
Every day you wake up and hope that this will be the day…you go to bed hoping the call will come during the night.
We went about our daily lives as best we could, always planning ahead in case the call came.
My husband played in a musical, and the musicians were in a pit that was raised during the show.
If he had got the call, he would have had to climb out of the pit and onto the stage, and head into the hospital.
It would have made a great story if that had happened…but it didn’t…
If my husband was well enough to escape the city for a day or two, we weren’t allowed to go more then 2 hours away from the hospital….and they had to know exactly where we were to allow for travelling times etc.
About 9 months in, we had a trial run…what is known as a dummy run…my husband got the call, we went in, we made arrangements and waited…only for the transplant to be called off about 6 hours later as the liver was not good enough.
Although draining and tiring emotionally and physically, my husband was still doing ok, so we viewed this as a positive experience.
We now knew what to expect, and the good news is he was somewhere near the top of the list for his blood group!
It was another 5 months before we got another call…it was 7am in the morning and my husband had dragged himself off to the gym for the little exercise he could do.
I don’t think the co-ordinator would have ever had a transplant patient ask if they could do their workout before coming into the hospital before!
By the way, the answer was no….get yourself organised and head in…
And after having my phone attached to me all those 14 months, this was one time when my phone was in another room while I was getting my breakfast…so family found out before I did!
As we had been through this before, we didn’t get as excited as last time, however we both tried to remain hopeful.
The reality is the transplant could be called off again.
And then there is all the other emotions…the knowledge that someone, somewhere, has recently lost their life and family and friends were now grieving.
However for us…and after another long wait…the day ended with my husband out of surgery and me being able to see him in ICU, already looking less yellow then when he went in!
The wait was now over, and the journey back to living could begin.
And that is the importance of organ donation…it is a gift that saves lives.