As I write this article, I am happy and relaxed. I am here to say that the last 2 ½ years (to last September) have been the most difficult, traumatic of my life and that of my immediate family.

Our journey through life has highs and lows for everyone and I have had my share, losing close family and friends and divorce to name a few, but this is different and hard to cope with, because it is so intense, ongoing, scary, unknown, emotional, life threatening, to name but a few of my feelings and that of other carers I have spoken to.

In my husband’s case, he became so ill he was child like, couldn’t make decisions, and could hardly function, so I took charge of everything, making all the decisions (some I made were good and some not so good). Looking after family and relationships, all household matters, everything physical, being responsible for doctors visits, liasing with the Medical Profession and hospital staff and in the process maintaining some form of normality and self preservation.

Indeed it becomes a huge balancing act, being supportive, positive, caring, staying quiet sometimes, feeling down, and appreciating how the patient is feeling and what they are going through. Some days giving them a little push (physically in a wheelchair maybe which I did one day with the brake on and a flat tire). I’ve not been the same since, or pushing them in a positive direction, but at all times trying to maintain their self esteem and preservation.

I have always tried to be a positive person and believe if a door A closes, door B or C will open or that I can make that happen.

It is such a relief to actually get on to the transplant list and then comes the waiting period, but when our call came and my husband had his transplant it wasn’t actually as bad as I had prepared myself for. Sure there were times that were difficult and spending a lot of time in hospital wards can be a very unpleasant experience, but there are people there for you, who understand exactly what you are going through and can help.

Then after transplant, when your loved one is recovering and becoming better and able to start doing things the balancing act continues because it is time to start letting go – encouraging little jobs done, again being very positive about progress, but pulling back, which can be a little difficult, because one has been used to being in control and this can cause conflict.

I would like to offer some helpful coping strategies,

• At all times maintain self preservation, because you need to stay fit and healthy to cope.
• Take time out, reward yourself - even when the patient is in hospital, if they are O.K., have a day off or an overnight stay with friends or family, or in my case my favorite shop.
• Do something different on the way to the hospital, i.e. visit a friend or a favorite place.
• Bring something to occupy yourself while visiting i.e. crosswords, craft etc. as the patients are often sleepy and you may be in a private room.
• Leave the ward for awhile if things get too tough – have a cuppa or call a friend or family member or go for a walk.
• Above all else – ask for help. I was stoical, thinking “I can handle this”, but there were times when I should have asked for help. People often offer help – say “YES, perhaps you could get me some supplies or make me a casserole. “
• Understand that it can be hard for close family member, especially young people to deal with spending a lot of time visiting, so it’s O.K. for them to leave when they need to.
• Understand also that some people can’t deal with long term illness, they may send a get well card and when the person doesn’t get better quickly they are uncomfortable – try not to expend your energy on that.
• Often the patients aren’t themselves because of all the drugs they are taking – allow consideration for that.
• Before – during and after transplantation take one day at a time and deal with things as they come.

In closing know that the magnificent Liver Transplant Team is always there for you and your loved one, never be afraid to call them if you are worried or have a query and we say a huge thank you to them for everything they have done for us.

Also my husband and I have found great comfort, friendships and even a lot of laughs by joining and participating in ‘The Liver Support Group’. We are obviously very grateful for our 2nd chance of life, but by taking part in days like today and the activities of The Liver Support Group it is not just saying thank you it is doing thank you.

- Wendy Priestly