Just once, I'd like to be able to walk down the street with my husband as a "normal" married couple and not be referred to as the "man waiting for a liver transplant and his wife." I'd like to be introduced to new friends by some other phrase than, "This is Tracy, you should know her...her husband is very sick and is waiting for a liver transplant." Afterall, I married a man---not a disease, not a situation and not a circumstance.
I guess the most difficult part of all of this is not the "wait", as one would expect; but rather, the "watch". I must wait as long as it takes; however, I must also "watch" as my husband changes both mentally and physically from day to day. Yes...watching him deteriorate before my eyes is the most dificult part of all of this.
I am a Registered Nurse and I work with chronic illness on a daily basis; however, it is very different when dealing with it on such a personal level. This disease has taken so much of my husband from me and yet, the disease has also given so much of my husband back to me. Learning and struggling through the initial diagnosis, failed treatment, routine lab tests and procedures, endless road trips, specialist after specialist, transplant program protocols, etc. has brought us closer together.
It is hard for me to be strong for him at times. He is a rock and my source of inspiration--that which I should be for him. His optimism and upbeat attitude is remarkable. At times, I feel ashamed of myself for being so negative and so pessimistic--actually, I believe that rather than being a pessimist, I function as a "realist". It is easier for me to think of the worst and then there aren't any bad surprises or things that can pull the rug out from under me, so to speak. I prefer to look for the worst and pray for the best.
I will be 33 years old in August. It is terrifying to think that I may very well be a widow before I reach 40! Pessimist--no, realist! I hope and pray with all my heart and soul that a donor liver comes soon for my husband. But, the thought that he would not have a positive outcome from surgery or that his body would reject the "life-giving" organ clouds my mind. I don't want to lose what it took so long to find--I don't want to lose the relationship, the friendship that has grown between us. I am scared, but I must be strong!
What do I want? I want things the way they were before he was diagnosed, before he started showing symptoms, before he started becoming confused and disoriented. I want my husband back! Is that asking too much?
Am I bitter? Perhaps, I am bitter but not at my husband, not at the doctors....at the life-sucking, chronicity of the disease--Hepatitis C!!!
It is my genuine hope that others will not have to go through what we are going through. Please, I urge you to get tested for HCV and do it now!!! Don't let this "silent" disease ravage your lives as it has ravaged our lives!