Check out the below links to learn more about Cystic Fibrosis, organ transplants and how to become and organ donor! 

Cystic Fibrosis Foundation

Transplant info

Become an organ donor

Extra! Extra! Read all about it!

Extra! Extra! Read all about it!

Written by Rima.

Okay let's talk about something very important, organ donation. Now how many of you are a registered organ donor? If you are, that's amazing and I love you. Being an organ donor is one of the best and most selfless things you can do. Did you know that you can help save eight different lives with your body? Pretty cool, huh? If you aren't an organ donor then shame on you! Ha! Just kidding, but no really you should absolutely go register to be an organ donor. If you're thinking “ugh I don't know how to do that” or “I don't want to go to the DMV” then I have some good news. You can do it online! You can use your computer, tablet or smartphone, which most of us have these days, thus making registering pretty easy. If you have time to Facebook stalk then you have time to become a donor

Once you click on the link, click on the sign up button and just fill out some personal info. You’re going to need your license ID#. It only takes a few minutes to save lives! Do yourself and someone else a favor and become an organ donor today!

Going through this whole pre-transplant shenanigans has obviously made me more aware of the need for more people to become donors. The amount of time some people spend waiting on the list for new organs is crazy! For some people they need a very specific match because of either blood type, size and antibodies. If you have a not so common blood type and are very small then you’re going to be waiting for quite sometime. For some it's too late and they die while waiting on the list because their perfect organs never came in time. Warning, morbid thoughts approaching! When accidents happen and people die they aren't always an organ donor and essentially those precious organs go to complete waste! It’s not like you're going to need them, so why not be proactive and be an organ donor! Just saying... 

Some people aren't organ donors and medical professionals have to refer to their next of kin to ask if they would allow them to harvest the viable organs. Some family members say yes but some say no. They may say no for a number of reasons. That's when covering you're own butt with being an organ donor comes in handy. Time is lost doing this, checking with family members, jumping through hoops. Time that is very precious to keep organs viable. But also time on the end of a possible recipient on the list. Time rules all. 

As spring approaches and the nice weather ensues, well slowly continues from this so called winter. People like to be outside and some of these activities include motorcycles. The amount of motorcyclists and bicyclists I see that don't wear helmets is insane!! It’s like do you want to smear your brains all over the pavement!? Since you refuse, then you might as well be an organ donor... They should wear a helmet because if they die on impact without one, then only their tissue can be used, the organs are no good. But if a helmet is worn and they get to a hospital and pass, due to complications the organs can still be used! Trust me you don't look cool without a helmet you just look like a turd. Sorry not sorry about the real talk, we're all adults here. 

Here are some statistics to backup all this chit chat. There are about 199,000 people waiting on the national transplant list. 22 people die each day waiting for a transplant. 95% of U.S. adults support organ donation BUT only 48% are organ donors. Every 10 minutes a new person is added to the transplant list. Only 3 in 1,000 people die in a way that allows for organ donation, crazy right?! Kidney transplants are the most common transplant and lung transplants are one of the least common. If you want to learn more and brush up on your "bar talk" check out more statistics here

Now, for some positive thoughts. The past several months two of my friends have received that life changing phone call. Life waiting for a transplant can be long and frustrating as you have learned from my personal journey on the list. I would like to share some thoughts, perspectives and stories of two strong amazing women; who have now experienced firsthand the benefit of someone's selfless gift of having become an organ donor. Today they're breathing with "new" shiny air bags!  

I would like to introduce to you Tiff Rich, at Stanford. Tiff and I became great buds through social media and now text almost everyday. It's been amazing being "by her side" through part of her journey and hearing firsthand things that were happening pre-transplant and directly after. My favorite text from her will always be "I GOT THE CALL!" She was waiting on the list for about 2.8 years...yes, holy shit is right! She is all about helping bring awareness to CF and organ donation. She even has several vlogs on Youtube about her life on the transplant list and as a CFer. #lungs4tiff  #tiffgotlungs

Here are Tiffany's thoughts.

On November 30th, 2016, my life changed because someone decided to be an organ donor. Having a genetic disorder known as Cystic Fibrosis has challenged me to no end, but needing a double lung transplant because of it was a new obstacle that I needed to conquer. Pre-transplant when I was healthier, I did not know much about transplants. The only true knowledge I had was that people exchange their failing organs for new ones from a person that no longer needed them. Sadly, I only learned this in high school when the DonateLife people came to talk in my 9th grade health class.

 Hours before going into surgery for lungs

Hours before going into surgery for lungs

I wasn't prepared for when I was told I was going to need new Lungs. I was devastated and didn't know what to do. Thankfully, I have a bunch of health professionals and supportive people in my life that were able to guide me and bring me to a calm and positive place. While waiting for transplant, I was able to see how a second chance of life was a blessing and that being able to breathe normally would allow me a greater quality of life. Even though getting over the fact that someone would have to lose their life to save mine was hard to get around, I realized that the person would want to keep their legacy going and I'd want to make them proud.

 post transplant

post transplant

After receiving my gift of life, I have couldn't tell you how grateful I am. I am blessed that someone took a few minutes to check the DONOR box on their DMV form or go online and register. I am able to do much more than I ever thought possible with my infected lungs. I was able to view and touch my own lungs and I don't know how I was able to breathe. Transplant is such an amazing opportunity. It's rough, don't get me wrong, there are bumps along the way, but there are no bad days if you're breathing. My view on transplant went from being one hundred percent frightened and against doing it to a positive mindset because I knew it would give me the quality of life that a 20 something woman should have. 

 Holding her old crappy CF lungs

Holding her old crappy CF lungs

 I will now introduce to you Ashlee T. at UPenn. We also became friends through social media because we both had similar numbers on the transplant list. We both got put on the list within several days of each other. Right before she got her call we almost had the same LAS (lung allocation score), which was 41.5 something. It was so great chatting with someone who was on the list just about as long as I was with similar health status. 

Here are some of Ashlee's thoughts.

When my regular CF doctor uttered that word…transplant…I wanted to scream about twenty things at once.  I am not ready!  My lungs have more life in them!  This is giving up!  I don’t want to start the clock!  I can still fight against this!  What’s it going to be like?  I don’t want to live in a bubble!  I want to keep MY lungs!  

My doctor strongly suggested that even if transplant wouldn’t happen right away, that it was probably smart to get the evaluation and groundwork taken care of ahead of time. I went into the post evaluation with optimistic confidence thinking that they were going to send me on my way and I would keep in touch with my health status.  Then my UPenn doctor said the 6 words I never thought I would hear that day, “We are going to list you.”

 Got her new lungs

Got her new lungs

 I had a dry run in December, which was a let down, but it did kind of prepare me for what to expect. By the time I got my call, I knew that my body and I were ready.  At about 7:15 am on February 8th, I got the official call. I didn’t go into surgery until about 5:00 pm and woke up sometime the next morning.  The first couple days were a little fuzzy with all of the pain meds.

 Walking around post surgery

Walking around post surgery

I am truly amazed at what the human body can endure and how different I felt in a matter of a month. I went from struggling to walk around my house with 5 liters of oxygen at all times, to running the Rocky steps at the Art Museum of Philadelphia.  They say getting a lung transplant for CF is trading one disease for another.  I really think of it as trading one routine for another.  I no longer have to do my vest twice a day, or 45 minutes worth of nebulizer treatments, and I don’t have an oxygen machine trailing behind me.  And those coughing attacks that always seem to happen in the middle of a movie theater or in the produce section of the grocery store?  Non-existent.  No more mucus! Yay! 

 Old lungs vs. new clean ones

Old lungs vs. new clean ones

But let me say one thing that has made this crazy journey all worthwhile.  I can BREATHE.  I can walk for miles without stopping.  Hell, I have even started jogging and my oxygen doesn’t go below 97%. How crazy is that? 

But the freedom that I now have and the feeling of being able to breathe without struggling, makes it impossible to have one second of regret. I know that I would be doing my amazing donor a terrible dishonor to look anywhere but to the future and make the most of this renewed life that he/she has given me.  It truly is a miracle and I will be forever grateful that I was given this opportunity.  Through this journey I have met so many people and made friends with other CFers that have had transplants or are waiting for one.  I am not sure I would have made it through without all of you.  I feel honored to be part of this army of CF Warriors.  Keep on breathing! ☺

I'm so thankful to have "met" these two warriors and am lucky to have these Cysters. CFers call their fellow female CFer Cysters and Fibro if they're male. It's so wonderful having friends to talk to who are going through the same thing as I am. Everyone will have different experiences and stories when it comes to transplants. Many of them are quite similar in regards to feelings and thoughts. But one thing in particular when it comes to lung transplants that seems to be the same, is that they can finally BREATHE! The gift that an organ donor can provide is priceless. The ability to finally do something that your own organs were unable to achieve is a relief, a breath of fresh air if you will, haha. I absolutely cannot wait for the day that I receive that call and am able to feel the relief and ease of breathing that is so effortless for the majority of the population!

 

Bonding creatively

Bonding creatively

Sparks of inspiration

Sparks of inspiration

0