Bethany's Story: Going Status 7
Hi, my name is Bethany, I am currently listed for an intestinal transplant but am also currently Status 7. What is Status 7? It technically means temporarily inactive. When I embarked on my transplant journey, I was extremely ill, vastly underweight, malnourished and in excruciating pain. It was my hope that I would get a transplant as soon as possible and get onto recovery and then back to life. But in the end that wasn’t the best path for me; so, in this post I would like to share with you my story so far.
I am going to skip over the years of GI issues, weight loss and gain, liquid only meals then tubes feeds and IV feeds and go directly to being prepared to be listed for intestinal transplant. When I got to my transplant team, I was in no shape to be able to endure and survive a transplant. Therefore, my team and I had to build up my nutrition, get me off of harmful prescription drugs, and perform a bowel resection for some gut rehab.
Post-surgery, I encountered major complications from being so sick and undergoing major surgery. Luckily, I was finally able to rehab, and I rehabed well. It was a ton of work, and many days I just wanted to give up, but with the love of my team, my family and friends, my quality of life just kept getting better and better. My labs finally became stable, I was gaining weight, and I was in the normal range for my height. I had energy once again and was able to go for long walks and the gym. I wasn’t just living, I was thriving. It not only surprised me, but it really surprised my team too.
With everything going so well in clinic and in my life, the risks of transplant no longer seemed feasible. At the time, it just so happened that I was coming up on my yearly appointments with all of my team. With each one of them I began to ask the question, “what are the risks if I were to delay transplant and live like this for a while? You know take a breath and enjoy life before the heavy undertaking of transplant and rehabilitation again.” The reactions were varied, some had never heard of postponing transplant while others thought it a wonderful idea.
Outside of clinic, I began approaching the subject with family and close friends first. Rightfully so, their reaction was one of apprehension and the reluctancy to not finish the process we had started. They all feared for my health and well-being. But as the weeks went by and we gathered more and more information and more support from the clinical team things became clear. And so we all agreed it was best for me to go on Status 7, take a break live life for a while, enjoy the present.
Honestly, if a single one of my doctors or nurses thought this was a bad idea then I wouldn’t have done it. If it was the recommendation to go forward with transplant, then that is what I would have proceeded with. Fortunately, I was well enough to be able to go on Status 7, temporary hold.
I get asked a lot, why Status 7 and not just de-list, and remove myself from the list completely. It is a complicated answer, but I can summarize with this. While I am doing well, I am completely unable to get my nutrition or medication through normal means, and therefore I am IV dependent. Receiving nutrition this way is hard on the body over time and as I get older and am on this regiment for an increasing period of time any of my systems could have severe complications that require me to be quickly placed back on the transplant list. In addition, I stay closely connected to my transplant team and we monitor my health with detail and rigor.
This is temporary and I know that. There will be a day when my doctors tell me it is time and I can only hope I will be ready for the battle. But I can tell you that this time is precious, and I am enjoying every single minute and take nothing for granted.