Rejection

What more can a organ recipient ask for than 9.5 years of healthy rejection free life. The reality is rejection is real and even as far out and "safe" I knew deep down it too would happen to me to just didn't know when. I guess no one can really be prepared for rejection and what it does to our bodies. I certainly was not ready. Within 5-7 days of having some chest congestion I began to realize this was not a normal cold/cough. I had seen my local pulmonologist after just a couple days of getting my cough. He was arrogant and ignorant and his care plan put me in grave danger. I listened to my body and went over his head to my transplant team. My fev1 had dropped 35% and my entire body felt off. My husband got plane tickets that day and we flew across the country to my transplant center in Pittsburgh. I barely made the trip

And was admitted through the ER. Immediately they put me on IV antibiotics as well as inhaled.

I was shocked at how fast my body declined, I felt like I was dying. All the fears and emotions from

Before my transplant resurfaced a it was so incredibly hard to not break down..to stay strong and push foward. 

We watched Wonder Woman before heading back to Pittsburgh. I'm far from

Wonder Woman but I fight my battles head on and take on challenges placed before me with courage & hope. 

We've raised some money to help with all our travel & expenses at this time. The love & generosity people have shown to me is just amazing. I am such a blessed person to have my life filled with beautiful souls who wrap their love around me and give me strength to endure. 

Officially I'm in acute mild rejection. It's treatable and I will start the solumedral tomorrow -Sunday. I have my best friend and incredible husband by my side. I know God loves me & hears my prayers...this too shall pass. 

"I have heard thy prayer, I have seen thy tears: behold, I will heal thee" 2 Kings 20:5

 

Turning 37!! Whoot Whoot!

Next week I'll celebrate turning 37 years old (and even better, I still look 21) haha!! 

I LOVE getting older. Living with Cystic Fibrosis is difficult, I honestly didn't think I would live to see my 18th birthday and look at me now! Of course I wouldn't be celebrating birthdays now if it wasn't for my Donor Angel. She selflessly gifted parts of herself to others like me and gave us hope & life. 

Organ donation is definitely very important and it's a beautiful gift to many of us who need people to save us. You are our Heroes ❤️ 

I've been enjoying doing nails (of course) and looking forward to the warmer Idaho summers so I can get out more. 

Health Update:

I'm doing good. My blood sugars are under control, my lungs are steady and my kidneys are still working 😊 however, I'm dealing with a lot more anxiety and stress. I'm hoping to get into a specialist to help me deal with some of my medications side effects. 

Enjoy some pics 😊

Super bright & fun spring natural nails with handpainted sunflowers 

Handpainted Ballerina Gels in a beautiful ombré 

Handpainted Safari Natural Nails 

So as y'all can see I'm going on 8.5yrs post double lung transplant...not bad considering that so many hospitals told me in 2007 that I was not a candidate due to Cepacia and that I wouldn't even survive the surgery. I'm living my dreams working hard to stay healthy and beating the odds every day. 

Is it a Losing Battle?

It's days like today that make me relive the truth that Cystic Fibrosis is an incurable terminal disease...and it's those memories of special people who passed away that make me ask is CF a losing battle? 

Today a young woman who just turned 20 on June 4th passed away...she was listed and waiting for a double lung & liver transplant. I never met her in person but we had many conversations about CF & transplant and life pre/post....

I cried today because it made me think of Susanne Noble who I became very good friends with...we had so much in common, I knew her before she went to Pittsburgh & received her double lung transplant...and we talked about life post transplant, for her it was not easy at all. She had so many set backs and her recovery was difficult...when she returned home her husband was not there to support her, my heart broke along with hers so many times. I felt her joy when she met a man that loved her and was there for her to the end...and that's what is hard...the end.

I cried today because it made me think of my CF friends who's funerals I sat through...knowing that it could be my funeral...knowing it will be my family who is suffering the sadness of my passing at a young age. I dealt with friends dying of CF when I was in grade school...and yet somehow I stayed optimistic and hopeful, determined CF wouldn't kill me. 

I like the term "celebration of life" rather than "funeral services"...but that doesn't make it hurt less. The internet and social media has opened up the CF community world wide and I have friends from all over the country/world that share their life with me & it's a beautiful thing. It's a double edged sword though...the reality of how many young children and adults die from Cystic Fibrosis becomes so overwhelming and at the same time the stories of awesome people who are doing amazing things living with CF are inspiring. 

My heart breaks for the families of my CF & transplant friends, it's days like today that I am reminded of the continued pain CF causes people...not just us that live with it but all that know us and love us and want to take our pain away. I KNOW how painful Cystic Fibrosis can be...I was there, I went to the edge and I barely survived. I saw and felt the pain my family and my husband experienced and to be honest...at the very end it didn't scare me anymore, to leave them, I was so sick and so tired I just wanted relief. I wanted my burden taken from me because I could no longer carry it. I knew my family was hurting for me but I wasn't in pain anymore...I had found that moment where I could be peaceful and allow my heart and soul to be peaceful. So I know my friends who have passed before me also found that peaceful moment & I take comfort in that. 

So do I think it's a losing battle? Anything worth fighting for until my last breath will never be considered a loss. Some of the greatest men/women to walk the earth died fighting for something they believed in...something that they knew would make the future a better place.  I believe that every day I live with CF and every day the medical world advances from the knowledge they gain adds hope that one day CF will be cured.