Hi, everyone
As most of you already know, I was added to the liver transplant list (UNOS - United Network for Organ Sharing) the end of January. The wait for this news was nerve wrecking. My pre-transplant tests concluded on January 23rd, but I had to wait for Vanderbilt's Transplant Committee to review my results the following Wednesday to determine if I would be approved for transplant. I will never forget the call I received on January 30th, letting me know I would be listed with UNOS by the end of the day.
I don't know that words can adequately describe how it felt to hear the words, "you've been approved for transplant." Of course I was happy to hear that I had been approved for a procedure that, if successful, would save my life, but I was also frightened beyond belief of what lies ahead. I know how my health with deteriorate while waiting for transplant, and I know the details of how serious the transplant process is (surgery and recovery included). That all being said, I continue to try and focus on the positive and deal with each day as it comes.
One thing that has helped me stay positive and power through my moments of sadness has been the outpouring of love and support from family, friends and community. Things have not been easy lately, with the development of more and more symptoms related to my liver diseases. I knew there would be more downs than ups while waiting for transplant, but that doesn't make it any easier. Each time I start to hit a low, I think about all of the cards, calls, emails, texts, donations, prayers, support, etc. that I've received, and continue to receive. I want you all to know how important you are to me, and to the success of my transplant.
When I went through the pre-transplant screening process, I was asked over and over again about my support system. Unlike many potential transplant candidates, my support system includes family, friends and a community of wonderful people. When my mother told the pre-transplant social worker about the transplant fund that had been set-up for me, and the benefit that was being planned, she was just blown away. Apparently, rockstar support systems like mine are not the norm :-). This information wasn't just good news to be shared, it was a vital part of my pre-transplant screening process, and the petition made for my transplant candidacy. In short, you all were a part my being approved for transplant, so THANK YOU!!!
While I'm on the topic of support systems, I must say a HUGE thank you to all who helped organize and those who attended the benefit last month. I was emotionally overwhelmed by the love, support and generosity shown. I must apologize for my absence during some of the benefit; my travels from Chattanooga really took a toll on me, and I was fighting yet another bile duct infection. Luckily, there was a couch in a back room at the Fishing Hole facility that provided the perfect place for me to rest, and allow people to stop in and visit with me.
And, as silly as this may sound, thank you to everyone who complimented me on how good I looked at the benefit. It was exhausting getting all "gussied-up," as one might call it, but it was worth it to feel normal and attractive for a while. My sickness has really taken a toll on my body, so being able to conceal that briefly was quite refreshing.
There were also some questions that came-up after my visit to Oxford that I would like to provide information on. Many people were surprised that I didn't look yellow at the benefit. Well, as with many diseases, there can be fluctuations with symptoms. Just a month earlier I was yellow (jaundiced), and I will probably be that color again soon. In fact, I was so yellow at one point that a nurse struggled to identify my race. I thought she was joking with me when she asked if I was white. Lol!
In addition to my skin color, there was also confusion about why I didn't look more "sick." I do look "sick" more often than not, but I also fight hard to not let my sickness dictate my life. It was relatively easy this winter to cover the scars all over my body where I've scratched myself until I bled (itching caused by the build-up of toxins in my body), or wear clothes that conceal the fact that my abdomen is swollen to the point that I feel like I look like I'm expecting (ascites), but I won't always be able to hide the way my sickness is impacting my outward appearance. And as my diseases progress, things will get worse, but I will continue to fight to maintain as much normalcy as I can in my life. Attitude and approach to sickness can play a vital roll in outcome. I will beat this, and hopefully look relatively good doing it ;-)
For now, I wait for that life changing call. My MELD score (which is calculated from various laboratory values) is updated with UNOS regularly. This is an important part of ranking me on the transplant list, but not the only factor considered. Severe symptoms can also have a significant impact on transplant list ranking. Luckily, I have an amazing team of doctors that are monitoring me regularly to make sure that I get a new liver as soon as possible, so I don't worry so much about all of the technical components of my ranking. I can't control where things go from here, so I just focus on taking care of myself as much as I can, and enjoying life.
I love you all!
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