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Making Connections

November 8, 2017

 <--Candid pic my bro snapped.         So I received some answers after my RE-admission to the hospital. First we discovered that my i have really skinny monkey feet.... (haha- but seriously) I always thought that i would be able to tell if i was retaining fluid but apparently my feet look like a normal persons when they are swollen and when they aren't... well monkey feet with bones sticking out. So most doctors that looked at my feet and ankles, couldn't tell if i was or wasn't retaining water even when pressing. So after a few days of labs, Lasix, IV antibiotics and steroids, i was much more comfortable and able to start healing. I lost 8lbs in fluid... and here I was thinking I was just packing on my winter weight already! ;)  My X- ray showed excessive trapped air in the upper lobes and pneumonia in all 5 lobes of my lungs. So it was necessary, even after getting rid of the fluid, to stay in the hospital until we get on the right antibiotics to start treating the infection.  The infectious disease doctors and my CF doctor switched around my IV Meds and the days rolled by.  I was hoping to be released on that Friday but then my white cell count started to shoot up. White blood cells are what fight infection so it alerted the team to do more exams and blood work over the weekend to make sure I am not fighting some new infection that we missed. Thankfully by Monday afternoon my white cell count had started to trend back down and I officially released to continue treating the infections on IV med's at home. I continued to rest for the remainder of the week and got back into my own routine of home IV's.
After basically a whole month in the hospital i was itching to get out for at least a short while, which brings me to why I REALLY wanted to write this post!!

 

This Sunday I was able to bring my Salty Roses shop items to my first craft show at the local JCC in my home town! I really wanted to do this not only to sell the items I love making but also because I just really wanted to get conversations started about organ donation.  I've noticed so many misconceptions about transplant and organ donation over the last few years that i feel like its my job now to spread facts and awareness. I am myself still learning things everyday but it is forced on me and i WISH i knew these things before i HAD to.  I was able to borrow a huge poster board from my close CF friend who herself has had a double lung transplant almost 10 years ago, and is a warrior i greatly admire!!  My niece and I walked around the tables and gave out facts and information on organ donation...  i was just so blown away and close to tears on several occasions from hearing stories from perfect strangers about loosing loved ones and being able to donate their organs, tissue or bones. And the heart wrench that it brings to have to make that decision for someone i couldn't even imagine.. but also comfort in knowing a tragedy could bring hope to another persons life. I spoke with people who have had relatives that received transplants and we shared feelings of being on the list and tips on getting through the day and staying positive. It was an amazing day and I was so honored to be a part of it!! Thank you to my mom and my family and friends who came to support me!! I could NOT have done it without my mom and the wonderful staff that provided muscle to move all my candles!! (we learned a lot from this show- next time were bringing a cart!!)  

 

I felt slightly guilty at times because a few people were calling me "brave" and I wasn't really sure how to respond. Of course I said the standard "thank you". But in fact, I often feel scared out of my mind. I feel like i'm going to get the call and sh*t my pants immediately! I don't necessarily feel brave... I do have moments of extreme hope and excitement for the future but then they are usually followed by immense fear of the unknown.  Fear that my body will immediately reject the new lungs or the chance that surgery will just not come in time.  There is a lot of "what ifs" when you have nothing to do but wait. So i'm making a pledge to do more than JUST WAIT. I am going to continue blogging about my transplant journey but also make a conscious effort to educate and promote organ donation as much as I can. I want to continue to make connections with people and get the conversation started that people don't necessarily think about.  Healthy or not, we should all know what our loved ones wishes are when the time comes. People just like me, on a transplant list, are dying everyday because there simply aren't enough organs donated. Just as many people are dying and being buried with healthy organs. I hope that I am able to give the ultimate gift when my time comes, and am able to bring hope to someone who is waiting for their second chance at life.  Whats your wishes?? Do you know your spouses requests or beliefs?? Whatever the decision is, be respectful of one another's views and have the talk now!!  Don't Wait!

 

XOXO- Salty

 

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