Monday marked the beginning of Transplant Assessment Week, the week that consists of many tests and procedures to establish whether or not I will be a candidate for transplantation. This culminates with a meeting on Friday with the entire transplant team where each candidate is discussed and ultimately placed on the list, or not.
So far it has been a pretty exhausting week. They’ve tested the functionality of my brain, heart, kidneys and lungs and overall endurance, and by the end of the week I will have also met with dietitians, pain doctors, and people who will test my bone density.
Today is an important procedure called an ERCP which is basically like an endoscopy with bells and whistles. This test will enable the doctors to get samples of my liver tissue to test for malignant cells, but also, will give them the possibility to clean up any blockages the see in and around the bile ducts, alleviating the source of the pain I’ve been having these past months.
I don’t have much fear of not making it onto the list, or even being a priority patient. Afterall, I have PSC, a disease which becomes increasingly carcinomic as time goes by, so the sooner a PSC patient has a transplant once eligible, the better. On top of that, I’m a young, otherwise healthy person with a young family who doesn’t drink or use drugs. Since my liver has begun to deteriorate quite rapidly in the last 4 months, the doctors seem to be taking this quite seriously.
Even being high priority on the transplant list does not guarantee I will be matched with a donor liver. The biggest problem is my blood type. Even being a high priority, because the B blood group is quite rare, I may be waiting up to 18 months for a cadaveric (from a dead body) liver, and it’s because of this that the doctors have urged me to consider partial live donation. This is the tricky part. Who do you ask for such a ginormous gift? And of those who would actually consider doing this enourmous, altruistic act, how many are actually B blood type and my body size?
At the end of two direct conversations which I do appreciate (I’d rather know the truth than be fed false hopes), I again felt helpless and hopeless. The doctor told me that now is the time to be selfish, to ask for what I need, that my life depends on it. The tears came when I realized that I am totally out of my element. I am a giver, and feel most comfortable answering to the needs of others. Asking for anything for myself takes me way outside of my comfort zone, and under usual circumstances I’d rather find a solution on my own. Only this time there is no solution to be found on my own other than to wait, pray and try to get on with life.
This brings me to one of the big findings that have been titrated in the last four months. There is a link between leaving hospital, going off of IV antibiotics, and pain. Everytime I’ve gone home to try to resume some inkling of normalcy, the pain becomes unmanageable and I’m forced to go back to hospital. Today’s procedure is aimed to try to find ways inside the body to ease the pain. If nothing can be done, somehow I need to have access to stronger medication. One of the challenges with liver disease is what one can actually ingest. I can’t take paracetamol or ibuprofen, so when I have a headache I generally have to wait it out. At other discharges, they have sent me home with a pain medicine that barely helps manage the pain and certainly doesn’t offer relief. Any discharge is contingent upon today’s ERCP and change in pain medication. Otherwise Im liable to be right back in here by next Monday.
The most challenging aspect to manage throughout all of this is my mind. In yoga, there is a saying that everything is empty from its own side, that it is each individual’s perception that fills the thing with meaning. In other words, everything in the material world is homogenous and it is our mind that imbues meaning to create differences and diversity of perception (vastu samye citta bhedat tayor vibhakttah).
While I’m in the hospital, each day is focused on projecting into the future. The entire assessment week is completely designed around the ‘what if’ of the future. During this time it is challenging to stay grounded in the present. The conversations I have with doctors and transplant coordinators are based largely on their perceptions, and I’m fascinated with the roller coaster effect this has on my own emotions. One doctor says I may die waiting on the list, another may say I could get a donor liver in a week. Neither is right or wrong, both are possible. Only with the ability to bring myself back into the present do I realize that actually nothing has changed, I’m still Lizzie and I still have a heart beat and a brain and a lifetime of experiences that remind me of how it feels to be in my skin, of how I sense and feel and sit with myself. The things I’m experiencing as challenging in the hospital are actually no different than the things any of you experience in your day to day lives-the challenge of controlling something ultimately uncontrollable: the mind, our destiny.
Here we go-the porter is here and it’s ERCP time…