Transplant life 3 years out!

Hello and welcome back!

It’s me, the one and only Aimee herself! I promised I would post an update on my current health and life, so here it is.

Life post transplant has been amazing! It is certainly an emotional roller coaster, with highs and lows. But over all it really is incredible.

As I write this, I am currently 3 years, and 3 months out from my double lung transplant. I can not even put into words, how amazing it feels, to be able to live again. I am breathing easy, I don’t have extreme coughing fits anymore, I am not struggling to do day-to-day tasks, etc. I have finally been able to be the mother, wife, daughter, sister, friend, that I’ve wanted to be for so long. I love that I can keep up with my son, when we play now. We have had countless days playing outside. Whether it’s in the backyard, on the playground, sledding, beach days, nature walks, sports, etc. I can do all those things right along with him. And chase after him.  I have accomplished a few 5k races, and plan to do more in the future. I have been to events, concerts, celebrations, etc. I have had experiences that I could not have done during my many years of being very sick. My most important goal has been, and will always be, just raising my son. Teaching him life skills, shaping him into a kind, good-hearted, respectful, loving person. helping him learn everything he needs to and more, and giving him all the love and cherished times, that he deserves.

I always have, and always will have a positive out look on life, and a positive attitude towards most everything. So life may sound like rainbows and butterflies when I talk about it all. But I assure you that there are things and moments that are not pleasant. And there will always be things that I have to keep a close eye on, and watch out for. and certainly there are challenges that I have to go through.

So far, I have been very blessed with minimal post transplant complications, compared to most of my fellow warriors. It is known in the transplant community, that having a transplant is not a cure, but rather “Trading one set of problems for another.” Although my lungs are healthy, and I am much better off than pre transplant, I am indeed not “cured.” I still have Cystic Fibrosis, and it still affects other parts of my body/health. I just don’t have the crappy lung part anymore. Transplant comes along with it’s own set of health concerns, and risks. There is always risk of my “new” lungs going into rejection. Which means my body see’s the lungs and a foreign object, and tries to destroy them. there is a high risk of getting infections, due to being on immuno suppressants, and having a very weak immune system. I have a higher risk for certain types of cancers. I have to be on A lot of different meds, to keep all my health, and symptoms in check on a daily basis. CF and transplant can bring on a lot of other side issues. for instance, I also have diabetes, osteo perosis,  pancreas insufficiency, vitamin, mineral, calcium, enzyme, and many other deficiencies. and other things that I cant even keep track of.

So as you can imagine, taking care of my health, and getting often check-ups, is a must. I see my normal doctor for minor/everyday health checks. I see a CF specialist, for the obvious. and I see my Transplant team for all of those needs. As I had my transplant Done in North Carolina, that is where my transplant doctor and clinic is. currently I have check-ups about every 5 months, if all is going well. But I may have more often visits, if there is something concerning going on with my health.

Since Transplant, I have had one episode of A1 rejection, which is the most mild form one can have. it is very treatable. I had IV med treatment, and it went away. That was in my first year after transplant. I also had a form of infection, that I had six months of IV treatment for, about 6 months after transplant. That also went away. I had to have a procedure, to prevent any reflux from my stomach, being inhaled into my lungs. I currently have a form of mild infection, but nothing that needs treatment. it doesn’t affect my health. So over all I have been very blessed.  I have friends that had transplants within months of me, that have passed, or have had a ton of complications, and are struggling to stay healthy. That is one of the hardest parts of this journey. Seeing other transplant friends struggle, and even pass. And knowing that could just as easily be me. Things can go from great to terrifying real fast. So naturally I have to be very careful, and really pay attention to any signs of health concerns.

My body is full of scars from all of the surgeries I had to have. and from every tube, needle, and piece of equipment that was attached to me. But I really don’t care. I love them all. Because they tell a story, and remind me of just how strong, and resilient I am. They look pretty “bad ass” too.

Most people think that the actual transplant itself, is the end of ones transplant journey. But in actuality, it is just the beginning of ones life long journey to keep living. I would have never made it, if it weren’t for everyone’s support, help, love, and prayers. It really takes a village to walk this life successfully. And I am beyond grateful for all of you. I am a very independent spirit. And I hate asking for help. But I know I Need it. And you all prove to me, that with the right people, and right attitude, anything is possible.

We continue to fundraise, as the cost of post transplant care is still very expensive, and very crucial. Medical bills, meds, and travel expenses, add up fast. And most importantly, the chances that I will need a second Transplant some (hopefully) far off time in the future, is Extremely real!

I live my life to the fullest. And I never take anything for granted. I cherish every breathe I take, and every moment I get to spend with my loved ones. I try to be the best person I can for myself, and all those around me. I do my best to make a positive impact, whenever possible. I am always willing to help another. And I am always a listening ear. I have great goals for the future. There are a lot of things I still want to accomplish. So I am making every moment I have count. Life isn’t easy for anyone, but there is so much beauty in it. So I choose to be Happy, and pray that everyone else can view life that way as well.

Stick with me, and my lifelong long journey to stay alive. And I promise this is only the beginning of a wild ride. Your support means the world.

Lastly, we will be posting new, and fun events on here, as they arise. So keep an eye out, and I hope to see you at one of them!

Much Love, Aimee.

TADA!!! The long awaited update!

Hello, Hello, one and all!

It’s Aimee herself, posting an exciting update. We are getting back in to the swing of things, and updating/revamping the page!

I am terribly sorry about the lack of news, for so long. We have all been trying to manage multiple other things in life, and doing things behind the scenes. But it is high time to re focus.

I will make a long update on my current health status, recent adventures, and upcoming news later tonight.

But for now, let me just say, it is SO good to be back!

I love and Appreciate you all, more than you know. Your support has gotten me through my very toughest times, and continues to keep me going.

We are still fundraising, as the cost of taking care of these new lungs, and my overall health is just as important as getting the actual transplant! I still need to visit The Duke transplant center, in NC, for my check ups, and testing, and health management. I go about every 5 months if things are well, and more often if any health concerns arise. as you can imagine, it is costly, along with my meds, and medical bills.

I deeply appreciate all of you, who stick with me, and continue to follow my journey, and offer support and love.

I posted about our most recent fundraiser, coming up in October. You can find it under the events tab. Check it out, and sign up if you can. I am excited to reconnect with everyone. Look for my health update later tonight.

Love, Aimee