Today we returned to the Austin Hospital, to go to the Liver Transplant Clinic for my husband’s regular checkup. After spending so many hours in the waiting room, and at pathology and pharmacy, it is beginning to feel a little strange to now be going back every three months. We don’t recognize many of the other patients now…many of the people we knew pre-transplant are now dispersed into post transplant, and we all come in at different times.
We like to think that everyone who we met through our journey pre-transplant are now all doing well but reality says differently….we know of at least two people who didn’t make it and a unfortunately a few who have died since having their transplants…a cruel twist of fate.
I used to hate hospitals, be almost terrified to go in even just to visit…..it was almost like I feared getting sick by just being in such a place. That quickly changed when Jas got sick, very sick. I had no choice but to “get on with it”. I began to know all the tricks, from the best place to get a car park, to negotiating the nightmare which is emergency, to knowing who the best people to speak to to get the right information and to get help. I got to know two hospitals very well, each one very different…one public, one private. The guy at the cafe knew what tea I drank..with soy milk.
I got frustrated with some of the poor decisions made – an example being transferring Jas from one hospital to another despite not having a bed to put him in (he could have been admitted where he was), resulting in numerous hours being ramped in emergency. It was just horrible when you come against such chaos…nothing you can do but be patient. It is just awful seeing one you love in pain and sick, and you can’t fix it.
Now going into a hospital holds no fear for me – going to the Austin is almost going to a familiar workplace or shopping centre. We know where to go, and we always run into staff we know from our previous visits…from the doctors to the ward cleaners! Mind you, I never want to see the inside of the emergency room again…
Its a weird feeling, you don’t want to feel like you belong at a hospital, yet there is some form of comfort..very strange. And this comfort helped me when I had to face surgery recently to remove my diseased thyroid. Being in hospital, and even the surgery itself, held no fear for me which is a totally different perspective then what I would have had a couple of years ago.
But all good news today for us….all his levels show that his new liver is doing really well, and everything is working as it should. He is probably now one of the most healthy people I know!
So what does it take to keep a liver transplant recipient alive…here is Jas’s meds for the next three months. He has to take them, no ifs or buts…if he stopped taking them, his body would start rejecting the donor liver, and he would not survive. I am constantly amazed at what modern medicine can achieve and my husband is living evidence of that!
