Transplant Hopes and Fears

I can't imagine what it would be like to have the energy to run and play with my child. I can't imagine breathing clear breaths or being able to laugh without having a coughing attack. It would be weird to actually be hungry and able to hold onto my calories and not have to do feeding tube formula every night, even potentially getting my port and g-tube removed. I could have the chance to get out and be more social by having a job and contributing to society. I would love to be able to stop doing breathing treatments and primarily have my care consist of pills. Thinking about a better quality of life, more time with Aiden, and a future with Alex is crazy to me. To imagine seeing many more birthdays and holidays means a lot to me and I want to be a part of everything. There are still so many things I want to do and transplant could give me a chance to have more time and help other people, which is very exciting. The feeling of going to sleep without feeling like I'm suffocating or waking up in the night with extreme coughing attacks leading to vomiting or suffering from fever after fever beating my body down is a really crazy thing to me and something at the moment that sounds like a dream.

If all of this sounds exciting to you, please consider donating to the COTA (Children's Organ Transplant Association) in honor of me, it is singlehandedly the best and easiest way you can help: https://cota.org/campaigns/COTAforSaraW

With hope of course comes fear, my evaluation fears are forgetting something important, being denied, or finding out my lungs are actually doing really well and the wait for a transplant is going to be a lot longer than I thought because my day-to-day life is extremely difficult. I'm also kind of afraid of being listed because life could change very quickly and transplant is a big deal.

Actual transplant fears are the moment with my family before I get put to sleep, finding out old lungs looked a lot healthier than what they thought, having complications from transplant-related to extreme blood sugar issues, bleeding or clotting, or standard transplant complications that make post tx life worse than life now. I'm afraid of dying in the sense that I will know I'm dying and the moment freaks me out because I'll want my toddler with me without exposing him to seeing that and him noticing that everyone is crumbling around him. I absolutely hate the feeling of losing control of being able to take care of him, because regardless of what I can and can't do, I feel like I am the best one to take care of him and I understand his wants and needs differently than everyone else. I'm afraid everyone else won't understand his way of communicating or make sure that he is safe and that all of his needs are taken care of. I hate the idea of having to be away from him for three months, let alone forever and that scares me a lot, especially since he's so little that he might not even remember me. I am afraid the stress will cause my family to be angry or put a strain on their relationships and cause resentment. I will also have trouble surrendering control and trusting that the hospital won't make mistakes when it comes to my medical care because I've experienced a lot of issues before where if I couldn't speak up for myself things would've gone dangerously wrong.

I'm also afraid of after the transplant, adjusting to being able to live a life I'm not used to. I will have to likely get a job, something I've never really done before - I've worked with my dad and I've sold Avon, but I've never had a "real job". I'm afraid I won't enjoy having a job or feel confident enough to be independent and that transplant will have a strain on all of my relationships with my family, particularly Alex since he is not only my boyfriend but my caregiver. I'm also afraid that I still won't be able to balance my energy needs or I'll forget something important. Adjusting to normal life is difficult because I haven't done it in so long and there are some things I've never experienced normally. I am not looking forward to moon face and I'm not a fan of scars, so I will have an even harder time with my appearance. The last part of the transplant that scares me is learning all of the new medications and adhering to the strict scheduling because I am a slow learner and it's a lot to deal with all at once.

I guess in a nutshell, I am overwhelmed and excited. Please forgive me if you're congratulating me and I'm not quick to jump up and down with joy... it's a lot to take in. I'm a bundle of emotions sorting through all the various aspects and trying to take everything one step at a time and trying to stay optimistic. I've always been one to not only feel my own feelings but to get engrossed in others and try to understand what THEY are going through. It is just as important to me to make sure that everyone else is okay.

Overall, I'm just really trying to hold out for another season or two of Stranger Things, some more Tori Kelly albums, and to see my brilliant little boy and Alex grow up. Recording music would be cool too, but I've always had a war with myself on that one, and accepting that my version of outward perfectionism never seems to match my inward perfectionist is hard.