Just Hang On
You’ll eventually see the light
Looking back at my thoughts prior to transplant, I was worried about death and leaving loved ones behind. I was concerned about the unknown and how my body would respond.
Now, after having had my transplant surgery on Tuesday 5th October, all of my pre-transplant concerns seems null and void. My biggest battle post transplant has been mental toughness and keeping myself mentally strong. This is what I wasn’t prepared for at all.
The day after my transplant I was out of bed walking, ready to take on the world. I was feeling strong and healthy. I was seeing changes in my body that I hadn’t anticipated- my eyes are white for the first time in my life, my skin colour looks healthy. And I’ve seen changes slowly as time has gone by.
It was 5 days post transplant, and I got an infection. I was in hospital for another week before being discharged. The pain medication made me hallucinate and see things that weren’t there. It was horrible — I was too scared to close my eyes at one point because regardless of the time of day, if I closed my eyes I would hallucinate again. My infection finally cleared. I had to have a lung tap just before I was discharged as I had fluid sitting around my right lung.
I was discharged, with only one pain medication in hand and I was so relieved to be going home.
A few days later we went for my first checkup with my doctor. He was happy for the most part, he just wasn’t comfortable with the sound of my breathing again and said to give it a few days but perhaps I should go for an ultrasound again in case I needed another lung tap.
A few days later my Dad brought me through to the hospital, and I was given another lung tap after the ultrasound.
I was home for about 5 days after this lung tap. I was enjoying the time with my family and beyond happy that my sister was there that I got to spend time with her.
I had quite a quick onset of severe pain on my right side. I messaged my doctor and he brought me in. An abscess below my diaphragm and above my liver was detected and I had a drain put in to drain the abscess and all of the fluid that had accumulated in the area. I was discharged after a few days, and sent home to recover. The deal was that the drain could come out as long as the fluid in the drain’s bag would continue to reduce.
I was readmitted into hospital again a few days later because the fluid increased. I had a PTC and PTBD procedure where a catheter was inserted through the bile ducts in my liver and is there to aid the flow of the bile in the right direction.
A few days in hospital and the doctors picked up, through blood tests, that my hemoglobin levels were very low and I needed two unit of blood via blood transfusion.
The speedbumps are common and expected with split liver transplants. And I was told beforehand that I may have a few issues.
My mind has felt like mush and more often than not I’ve felt like I’ve had very little control over my emotions. I go from feeling quite calm and relaxed, to an absolute mess of uncontrollable tears, to feeling completely numb, and then absolutely exhausted.
Initially it was embracing that fear of if my body would manage lying on my side post transplant. Now the pain has become a minor side dish.
I feel exhausted from feeling so many things at once. And all I hope for is that I see the light at the end of this damn tunnel soon, because I have felt like so low in my life.
In some moments, I can muster the courage to see the bigger picture and look at things as a whole. I can see that I have made so many improvements and that I am moving forward. I can sit cross-legged, I can shower on my own whilst standing, I can walk — and the distances get longer every day. Physically, apart from the draining hiccups, I’m doing incredibly well!
Remember those moments and those factors gives me hope. It hasn’t been easy, it’s been a real shitshow at times… but all I have to do is just put one foot in front of the other. It doesn’t matter what pace I do that at, it’s just one step at a time. And I’ll see the light brighter than I have before and I’ll get through on the side.