13 Years!

Hello! Thanks for stopping to check out my newest blog. I am about 4 years out from my last post, so I will have to tell you all about how my life has been going!

I celebrate 13 years today, on June 10th! I have spent some time today looking back on past blog posts and just can’t BELIEVE where I have come from. I am awestruck sometimes when I think that I have been blessed with so much extra life. Statistics for transplants are not great, and only 50% of people make it past 5 years, and it continues to go down with each passing year. Yet, here I am after 13 bonus years. It is just unreal.

I remember SO vividly getting my transplant in June of 2011, and getting home from the hospital/hotel in Iowa City JUST in time to walk JP into his first day of kindergarten. I was SO nervous because I was still so weak and healing, but I remember a massive amount of pride and happiness that I was alive to see him get there. I was so thankful that a little 5 year old boy still had his mom on such a monumental occasion as the first day of kindergarten. His face on that day after months being without me was just priceless. And I will never forget it.

I remember vividly, and I mean vividly, just praying and begging God to spare my boys. They had already gone through so much with me being sick and basically useless at home for 2 years, then spent months without me, then they finally got me back. I prayed for God to just allow them to have me until they were done with Elementary School. Then, when I made that goal, it was Jr High. And now, I can barely believe that I am saying this, but I just watched my oldest baby walk across the stage at his High School Graduation. I have survived long enough to see him GRADUATE from High School! A son that literally any parent could be proud of. An honors student, a multi sport athlete, a generous and kind hearted young man, and a beloved young man in our community. That baby of mine graduated high school, and I was here to watch.

My other baby Josiah just finished up his sophomore year. I have loved every minute of being here to be his mom. He was only 3 when I got my transplant. I was so worried that he wouldn’t remember me if I didn’t get my lungs in time. Or wouldn’t remember the things I had taught him. He was 3 months premature because of my lung issues and came into the world behind everyone else in his age group in size and maturity. He was always the smallest guy amongst his peers growing up. However, before my very eyes this year, he has grown…TALLER than me, and he has stepped into multiple new experiences of life that I have actually been able to watch. He made the Varsity Baseball team this year as a sophomore and was given the opportunity to play many games this season. He played so well, and as his mom, it pulled at every string in my heart to watch him live out his dreams on the field. When you have experiences like I have, and when you know your tomorrow is never promised, watching things like that just gets you. It brings out emotions in you that the average parent just doesn’t have. And honestly, I wouldn’t have it any other way. Josiah is a very passionate, handsome, spontaneous and loving young man, and I am blessed beyond blessed to be here to continue to guide and love him.

And beyond all of those blessings, I am still married to the most incredible man that God ever created. Incredibly handsome, loving, funny, hard working, full of integrity, values and SO humble. Jay has coached Josiah since he was about 5 in multiple sports. He is so giving of himself to his family, and he would sacrifice just about anything for any of us. We celebrate 21 years of marriage in a few weeks as well. And it is a true gift in my life that I can still be just as giddy in love with him now as I was when I first saw him at 15 years old at the grocery store we both worked at. I knew then that I was going to marry that young man. And here I am almost 25 years later even more in love with him than I ever knew was possible. Our relationship is so easy. We go on as many dates as we can and love each other with a love that I think is about as close to a soul mate as you could possibly get. I can’t get enough of him no matter how much time we spend together. It is just a joy and blessing, and I can’t believe that I get to live such a fun life with my literal bestie every day.

In the past 4 years I have definitely had all kinds of things happen with my health, just as the course kind of has been in the past 13 years. I have different issues that have arisen and different ways that I have had to cope with things. My auto-immune disease gets really bad sometimes. I get very painful lumps in my legs that causes pain and trouble walking when I am dealing with a flare up. At other times, my fever syndrome (Familial Mediterranean Fever Syndrome) causes debilitating pain and tenderness in my chest and back along with fever like symptoms. There really isn’t a cure for this new auto-immune disease, but I do my best to try to manage it. And when I get a simple virus of any kind, it takes FOREVER to get over it. My medications diminish my immune system because it has to trick my body into not realizing that my lungs don’t belong to me. So, it is so easy for me to get sick, and takes me forever to get over it. But I always seem to manage! The LAM hasn’t really grown much into my new lungs, but I still have the masses in my abdomen which does cause issues. I started a new treatment about 4 years ago to break those masses down, and it has helped. They have diminished quite a bit and I don’t have as many issues with pain as I did then. I remember getting the advice years ago from my doctors that getting a transplant is definitely trading one set of problems for another, and this is true. However, I will take ANY set of problems over not being able to move or breathe.

In other news, I have been working REALLY hard in the past year or so to try to lose weight. After being so thin my whole life, I gained quite a bit of weight after transplant due to the medications and steroids that I take on a regular basis. I was really struggling with not liking how I looked and the lack of stamina I had at a higher weight. With that motivating me, I have been really diligent in making lifestyle changes, and I am now down about 60 pounds! I still have lots to lose, but I am feeling so much better about myself physically and mentally. The other reason that I really wanted to lose weight is that in order to qualify for a transplant, you have to meet certain BMI qualifications. I was over those qualifications and would not have qualified prior to this 60 pound loss. Super proud to say that now I am within range, so if I were to need another transplant, I would not be faced with rejection from the transplant team.

Speaking of the transplant team! I just had my annual tons-of-tests-to-be-sure-I-am-in-good-shape-day. I always get monthly blood work and breathing tests done, but this is something I do each year to get every last thing looked at. It also happened to be Donate Life Month! I was SO excited because at this visit, I was able to see not only my main doctor, but the surgeon who gave me my lungs AND the nurses that take care of me and stalk my every move to make sure I can continue to live the best life I can. It was an amazing day with some really good test results and things looking pretty good for me. I was SO happy that day.

As always with a transplant patient, tomorrow is never promised. I truly try my best to always appreciate every day. I try so hard to spend my time doing things I love and documenting the memories of those things to be remembered forever. I have now set my goals out further. I would LOVE, and I mean LOVE, to see my boys get married some day. The longest living lung transplant survivor I have ever heard of is about 27 years. And that is SO rare. I pray that medications and technology continue to get better, and that God continues to bless me in ways that I can’t understand so I can stick around as long as possible. I never thought I would get to see the things that I have, but with my whole heart and soul, I am beyond thankful.

Praying always for more years to love the people in my life and to make memories.