Transparency

Let’s sit and talk, I think I’ve talked about so much medically but very little personally. I’ve talked about how I feel and how I’ve come to terms with the next steps I have to take but I haven’t talked about the mental battles I’ve went through to get here. One thing I always promise to be is not only honest but transparent. The first battle began right when I did my exploratory procedure back in November of 2022. The doctor gave me a breakdown of what was going to happen and what their goal was and it would be a temporary solution to keep my native liver for a couple more years. This was all a lot to take in because they scheduled the procedure quickly and they didn’t have time to do the consultation, so we did the consultation while I was on the hospital bed. I was being told if it went well they would put in port to drain bile which would be attached to a “bag” on the outside of my body that I would have to empty and then occasionally clean the line with saline. In a very 24 year old and newly married girl brain I thought, “This is the least attractive thing that could be happening, my husband married me to be my caregiver… this looks like I married him for  medical insurance. How does one swim with this thing? How do I shower? How do I sleep? Do I tuck it into my outfit or does it just hang there? Don’t tell me I have to wear a bag to hold my ‘bag’!”… Everything was running through my brain and I blurted out “this sounds horrible!”. Now I know what you’re thinking, it was a life saving option but I’m 25 and was 24 at the time, I’m still learning and I make mistakes. I remember coming out of the procedure and the doctor saying, “well good news for you at least, you didn’t seem like you wanted it anyway. The procedure was unsuccessful so we couldn’t put in the port.”. In that moment a haze filled the room, I felt guilty because I didn’t mean to sound ungrateful to the doctors but in that same moment, I felt sadness because they told me I’d be hearing from transplant coordinators in the next week or two. I didn’t know what to do and how to feel. On one hand I was like “well at least I don’t have to carry anything around with me” and the next I felt sad. I also felt this large sense of guilt because poor Paul was getting put through the wringer. We had only been married 4 months and I had been to the hospital 6 times in that time. The poor guy is sitting there just learning as we went along, trying to keep my parents updated, inform his family and his work. This is all going on while he is working a full time job and going to grad school. The guilt ate me alive probably for 2-3 months. It was a rollercoaster ride but I think I needed the snarky tone from the doctor because I needed to realize that I’m getting care that other people can’t afford or don’t have access to. We learn a lot from our low points but as I always say, be grateful for your lows because they allow you to appreciate your highs. Not a single person is perfect, learn from your mistakes and most importantly grow from them. Be grateful for every bump in your road because there is a reason it’s not perfect, you may not know why yet but it will all make sense in the end.