It's almost April...my favorite month of the year....it's my birthmonth AND it's National Donate Life Month. Two things I LOVE celebrating :) I'll be turning 36 years old...I cannot even believe I am that old (in CF years that's OLD) lol. I remember when I was very young and was attending CF CAMP I knew a few of "the old" CFers who were like 18 years old and very sick, wearing oxygen...and I remember thinking "I hope I live to be as old as them"...there just was very few people with CF who lived into their adult years... It's just such a miracle to have lived long enough that I was one of the first patients to get pulmozyme.... a VEST system...then Tobi...then hypertonic saline...then Cayston...and although I've never taken Kalaeydeco I've lived to see all these advancements. I remember when a guy from camp named Charlie sold pizzas to raise money for his lung transplant..and it was still a very new procedure. I remember so many "new and breakthrough" treatments for CF. I remember when they first discovered the gene that caused CF in 1989 (I was just 10 yrs old). They knew so little about it when I was growing up. I feel like it was just a very misunderstood disease compared to what they know now. Who remembers manual CPT? That was the ONLY type of airway clearance. At CF camp, we had mandatory CPT time...like 3 times a day. Our camp counselors were responsible to do it. We had foam wedges to get better drainage. Pretty much my entire family knew how to properly do manual CPT with the cupped hands, it's all in the wrists...lol. Nebulized albuteral was about our only home prevention..well that and the giant syringe system for home infusions of antibiotics...I remember when I first got the medicine diffusion balls & those were an AMAZING invention that made home IV treatments soooooo much easier. I remember watching so many kids and young adults close to my age die from CF. I was very young when the reality of Cystic Fibrosis became too real to me. I had to deal with things most
kids my age never even thought about. It was hard to process...I couldn't understand why some kids with CF did better than others. Either way I prayed I would live to be an adult. Those prayers were definitely heard.
My life has changed so much...but I'll never forget, I don't want to forget. My life with CF has made me who I am and looking back is just a reminder of what I survived and how far I've come. I had many hard things to endure...but for every thing that was terrible, I had amazing and beautiful experiences, friendships, life long lessons, and faith building moments...all of these things helped create the person I see when I look into a mirror. I don't know how many people can say that they truly like the person who stares back at them...but I surely do.
Save a Life...Be Someone's Hero... Be An Organ Donor!
Despite the trials life throws at me, I know I am living the dream. I'm almost 36, I've lived 28 years longer than I was expected to when I was diagnosed with CYSTIC FIBROSIS as an unfant and over 7+ of those years with my donor's lungs. I've not only loved every day of my life but I've been blessed with a wonderful, loving, supportive family and a man who loves me more than I may ever realize in this lifetime. If that's not living the dream than I don't know what is. Being loved unconditionally through the good and the tough times is more valuable than money, fame, recognition or success...my husband is my best friend, the love of my life, my protector and my caregiver. I am one lucky woman. I thank God every day that he gave me this life ALL OF IT. I don't hate CF...because of CF I am the person I am and that it has led me to wonderful people and amazing opportunities. I try to Embrace every page of MY life story...because it's mine and it's special.
My last post was a little "heavy" but I've always promised my readers I would be honest and explore all the aspects of what life is like after my transplant ;) BUT today I want to do an update on my project 'Jamiebug's BUGHUG'. Http://www.JamieBug.com I also have a FB page. Feel free to look it up and share it if you want.
I have just completed putting together the 6th...yes 6th bughug bag! It will be mailed out to a very special and strong young woman who has been waiting for new lungs for a very long time.
Bag#1 went to a young woman from PA who is now celebrating 2 years with her new lungs
Bag#2 went to a sweet young woman who has since gained her angel wings <3
Bag#3 went to a young woman who celebrated her one year transplantiversary DEC 12th she's since ran a 5k and a triathlon! She's just an amazing woman :)
Bag#4 was a very special bag...my sweet cousin chose do put together a bughug bag for a young woman (18yrs old) who was waiting for new lungs. She personalized the bag to include an iPad mini which the recipient had always wanted one. The recipient of this bughug has also gained her angel wings now.
Bag#5 was the first "MENS" bag that I put together...which was kinda hard to do...lol. I didn't know what a guy would like, but the donation I got were great and he received that bag just last week. He had a long & tough recovery but he is released from the hospital recovering and doing good!
So that leaves us at bag #6...
When I was brainstorming ideas on what I could do to "pay it forward" and honor the gift my Donor gave...I wasn't sure if it would be something I would ever actually see happen. I LOVE sending these bags out to give patients who I know need a little extra love and support. Recovery can be so very challenging and there are even times when I thought "is it worth it to keep fighting..." And I got care packages, cards and so much support and love from family, friends, and absolute strangers...so I know what a care package can do to help people get through the ups and downs of recovery.
One thing I've decided is to NOT include PC Tablets anymore...instead I have began including workout tracking bracelets like the FITBIT I included in bag #6. It's so important post transplant to exercise and keep our bodies in good shape. I feel like products like the FITBIT encourages a healthy lifestyle of excercise and motion. <3
So to answer my own previous post "have I done enough?"...yes, well, no there is always more I can do but yes...I am trying to do what I can & I'm proud of that.
I will continue to put together "BUGHUGS" and find recipients for them...I am hoping to one day create an actual charity/foundation and get sponsors so I can get more bags out to more patients in need. That's my overall goal, but until then I will make a difference one bag at a time.
I often ponder why my life is the way it is...I am happy and I'm torn sometimes. I don't regret any decisions I have made. I do however sometimes ponder on the "what if's" and I find peace in knowing that I am supposed to be here, right now...doing whatever it is I have chosen to do. No one has ever told me what to do, who to be or what I can/can't accomplish. Okay well maybe a few doctors have tried convincing me of a few limitations, but again I believe that I have always had control over how I chose to live my life.
I do think I need to work on being a better version of myself...there's always room for improvement.
I wonder sometimes if I have made a difference in the world...
I ponder how much I would actually be missed if I wasn't here. Not in a depressing way, just in the sense that I question whether I have done enough....
I worry that I have abandoned passions, dreams and my own personal life goals.
I love that I have allowed life to take me to many new places, yet I felt like I lost my focus at some point.
I know what brings me true undeniable happiness...and despite that, I find myself sad and lonely more often than I used to. I blame it on my meds and the traumatic reality that I had to face going through my transplant....It's just impossible to describe.
I often ask myself "Can I be more than what I am?"
I wish I had more resources to do more for others...
I feel disappointed in myself sometimes...I think I've accomplished many of my life goals...but there's some I'll never complete.
I wish my whimsical childhood version of myself could co-exist within me.
I miss the amount of patience I use to have.
I feel trapped in life sometimes...financially and also by my fear of failure...if that makes sense.
I feel like I have an obligation to do something great and meaningful with my life especially after my transplant... I can't explain why I feel this burden, and I wonder how many other people who experience being so close to dying and then are given so much life back feel the same way...
I had BIG dreams and nothing could stop me...only to discover the only thing that can stop me is myself.
Despite all the thoughts and self doubt, I really do love my life...because I am loved by my husband and he is my reason to exist. I realized many, many years ago that my absolute happiness comes from sharing my life with him. So no matter how un-spectacular my life may be...it's still amazing because I know what it feels like to be loved unconditionally by someone who is a better person than I could have ever hoped for.
Living with Donor Lungs is a life of uncertainty and although everyone's life is uncertain...I know that I will have to re-live the pain that I worked so hard to escape from, it's the hard truth and trade off. One disease for another, but a good trade. The fear can consume me if I allow it to. I feel like I was so fearless growing up...I didn't put boundaries on myself and I pray everyday that I never lose that. I know I survived the hardest challenge I ever had placed in front of me and If I can do that than I can do anything.
I wake up everyday believing that I am alive because God has a purpose for me and although I admit my thoughts wander about whether I am enough...I know God must think I am because he continues to bless me.
I write this post because as hard as it is to admit to myself and allow myself to express these thoughts...they are real feelings I have to accept and remind myself that it's okay to not always hide them just so I can "be tough for everyone else". I believe I am my worst critic but I can also be my own best advocate because I know ME better than anyone else ever will. I can't lie to myself, so I know the deepest most passionate and intimate details of what makes me who I am. I can only accept myself and then work on improving my weaknesses and build on my strengths, because we all have room for growth.
Thank You for taking the time to read my blog. I am hoping that through this blog and my experiences that I can bring hope, faith and strength to all that may be living with Cystic Fibrosis, CF with Cepacia and Lung Transplant recipients. Information and blog entrees start Nov. 07. My Double Lung Transplant was on Dec. 10th 2007. Please feel free to read about my experience and ask me any questions! My email address is firstname.lastname@example.org
I told ya'll a while ago that I was working on making some "cause" bracelets out of paracord which is comfortable and VERY Stu...
It's hard to put into words how I feel toward my Heavenly Father and the Savior. I have so many reasons to be thankful for what I have gone through & endured. Because of my trials in life I have gained a strong testimony of Faith. I have always had Faith in the Lord and in Prayer. As I faced the decision to get a double lung transplant I had to rely on faith to make the choice.....By listening to the spirit, I was guided to Pittsburgh where my life was saved. I believe prayers are answered. I have always tried to follow the philosophy of this: If I do what the Lord expects of me, he will give me what I want & need. That has always worked for me. I Believe in MIRACLES..........My life on this earth is a miracle- I prayed on my knees for years to be healed from my lung disease. I knew that through a priesthood blessing (if it was God's will) I could be healed. So many times I thought he would heal me instantly...my faith was tested as I continued to get sick and no cure was in my future. I turned to prayer....I talked to my Heavenly Father, I cried to him and he heard me and he healed me by guiding me to Pittsburgh and guiding the surgeons hands. I learned humility, and thankfulness. I realized that we need others to lean on and we are supposed to strengthen each others testimonies. I learned that the hardest things we'll do are usually the greatest blessings in our life. I was able to experience a lot of things during surgery and I know I had comforting angels in my ICU room. THe Lord knows each of us by name and he will never leave our side. We need to remember to stay close to him and have Faith that he is watching over us. I know this for a fact! I know that following the gospel will bring us true happiness- the world will tell us otherwise, but I know I am truely happy & living the gospel has brought me that. Amen