Cyster, Sister, and Direct Organ Donation

"I believe in the fulfillment of self and will strive to contribute my share to the progress of mankind."

Sometimes you come across people in your life that you can't help but feel a strong connection to! For me that has happened alot in the past give or take 4 years that I've been doing my blog and focusing on CF awareness. I can't say that any connection is stronger than the other or better than the other. What I can say is that some tend to surprise me a little bit and hold a special place in my heart.

Growing up in a small WV town with Cystic Fibrosis it's normal to hear stories of other "Cystic's" who may be in your area or who is treated in the same hospital. Well, that is just what happened for me with Morgan Yoney. Although, before I "knew" her, as we have never met in person. I never knew who people were talking about just that this young girl who had Cystic Fibrosis and a double lung transplant was doing amazingly. I had heard about her fundraising and her selflessness to help others often. As most of the time nurses and medical staff keep certain patients in their hearts even after they have moved to another state, hospital, or sadly pass on. Normally, it's the ones with a sparkling personality and positive disposition in life.

🌟I'd like to say I'm that type of patient, but I have no clue.

Once I started my CF blog our paths crossed and I knew exactly who she was once she had told me she went to WVU's CF clinic.

🌟Now, I know how creepy that sounds, but it was more of a, "finally I can put a face and a name to this young CFer I've been hearing about for a little while."

Sadly, by this time her first transplant had already started to fail her and she was in failing health, but I guess I could say I saw a lot of me in her, as she didn't let that stop her. She was on a mission to do as many things as she can for others that I was in awe of this girl! The more I saw her posts and spoke with her I found out we have much more in common that just CF and our childhood Hospital. Morgan was and is my, Alpha Sigma Tau Sorority sister as well!

⚓Which just goes to tell you that AST is the best Sorority one can join!

Something just clicked inside my heart when all of these things came out about her and getting to know what a wonderful selfless young lady she truly is. That I admire her strength and will to live!! She deserved to be healthy, like most of us do, but this girl in my mind deserves it, because of how badly she is fighting for it.

Right now, Morgan is roughly in the same health standing CF wise as I am. We have a lot of similarities as I said even personality traits that we seem to share. She was last tested with an FEV1 of 19%, however, this was prior to a devastating hospital stay that was so bad she was even removed from the transplant list. Luckily, her will to fight and live her beautiful life was stronger than CF and it's nasty hold it has on us both! She was able to go home with a trek system for breathing and is now in the fight to find donor lungs. She is seeking lungs from an 0 Positive(0+) donor and because of her situation being so severe and so critical is asking for a, "Direct Donor Donation".

♻This is when someone who is a donor and is the 0+ blood type can sign their lungs to Morgan to assure that she is able to get lungs ASAP. As she is listed almost last after being taken off of the list during her last medical ordeal.

I know a lot of people have been unsupportive of this decision she and her family are making and the Internet is not a friendly place to be at times. The thing that people seem to be over looking is how many people die waiting for donor organs simply, because people don't want to be an organ donor. Morgan, like everyone on the transplant list, is fighting for her life! She has found a loophole that doesn't skip a single person, although, that is sadly how people are seeing it!!!

🌟I guess this is my selfish part of this blog.

At the rate I am at and our health standing being so similar IF I was on the list I feel I would most likely get the lungs Miss Morgan is needing, if not done with a direct donor. We would have both been set up with the same transplant team and hospital in PA. My decision to take myself off of the list makes me feel like perhaps she has a better chance at getting lungs that will benefit her alot more than they would ever help me. I know deep in my heart that B. Cenocapacia would have taken over a set of new lungs and would have been pointless for me. For her, they will be a breath of fresh air! She will have such a better life with the lungs that I possibly turned down!!

🌟Small secret, I have been struggling with the choice to not get the transplant since I made it, until I put it in that perspective. Even if not Morgan, which honestly I doubt my removing my name from the list a year ago this May is going to be the lungs she personally gets. It does mean that someone like her will be able to be breathing better and have a better chance than I would!

Look at the bigger picture sometimes instead of just yourself. When you pass on, why not be an organ donor? Just like money, your organs don't go with you when you die, in fact in some cases they get thrown away! That is a waste of what someone truly needs to stay here! So, what's the harm in giving life back to someone? Essentially, helping you live on through them!!

Supporting Morgan's Army,
  Sandi

For more information on Morgan, direct donation to her, or her struggle with CF join Morgan's Army on Facebook. Spread the word, post signs, share her updates, and if you are not an organ donor yet, change that and become one!! It's really easy!

For more of my journey, thoughts, and CF info follow me on Facebook! I'm pretty boring and not as active with awareness as of lately though. :)

CF, You, & Me

CF isn't a selfish disease and doesn't solely control your body it affects EVERYONE who has ever stepped into your life. Even those who are no longer a part of your life will forever have an impact by the disease, simply by making them aware of it. Everytime Cystic Fibrosis is mentioned those people will always think of you and your fight if they want to or not.

So, how do those who are closest to you cope with the disease? How do they deal with tragic and terrifying situations CFers have to go through? Honestly, I have no idea! Logically the only way of knowing this was for me to ask my family what CF and knowing me has meant to them. What watching me grow up sick and overcoming the expectations has been like and this is what they had to say.

☆Keep in mind everyone reacts differently to the disease and the CFer, so my family's answers are their's and their's alone. I only hope that a little advice from them can go a long way for you!

Peggy - My mommy
   From the very beginning when I looked into the eyes of my beautiful daughter I knew she was a fighter. Even though the doctors had already written her off as failure to thrive. There were quite a few scares and tears as she grew up, but it never seemed to stop her. We made sure her life was as normal as possible. Keeping her mind as well as her body away from the negative and towards the positive was one of our main goals. She reached for that golden ring in what ever she chose to do and still does, whether she seceds or not she always gives it her all!

   Raising a child with CF taught me not to give up, no matter what the Dr's. have to say. We made sure she stayed active during her teen years. I knew she had all of this energy inside of her so we took advantage of it. First with cheerleading which she excelled at, to camping, motorcycles and swimming at the local pool everyday every summer. It all sounds like a pretty normal childhood I'm sure, but the hospital stays were anything, but normal.

   So many Dr's. said so many different things! That alone can be overwhelming! At one point it felt as if we had moved into the hospital we had been there so long. But, like a trooper she has always had that smile that lit up the room as to say, "It's alright mommy I'm going to be ok. Besides there is a dance next week and I'm not going to miss it!"

☆My advice, if any one is interested is to make sure you show your CFer that she /he is not alone and that you are there to make sure they know that CF it not a death sentence, it is a reason to live as happily as anybody else out there and do it with a smile! ♡

Peanuts - My daddy
  Any advice I can give to another CF parents is to love them to death and let them do whatever they want and no matter what happens stand right there good, bad, or otherwise. The day Sandi was born was the proudest moment and the most terrifying day not knowing if we would get to see her succeed. A parent is never supposed to bury their children or even think about it and we do everyday.

   One of my favorite memories was escorting her across the football field for homecoming court she was so beautiful. Oh hell, I can't pick just one thing we did together that stands out it is everything. Every cheerleading competition, motorcycle ride, or dirt bike racing I loved every minute of it. We never stopped her from doing anything she wanted if she could physically do it or not. We just did it with her and she never failed.

☆She never had the word, " no " in her vocabulary. That may be why Tyson has so much to live up to, sorry man!

   If you take anything from this old man always help your kid go out there and give life a shot. Let them do what they want even if a doctor says they can't. Kids are kids no matter what!

Tyson- My "Husband"
  The ups and downs to being with a my terminally ill "wife" have been many. As you all know Sandi has Cystic Fibrosis. Something I didn't know much about until I starting going around her. It's not the same for everyone, but these are my thoughts and opinions on our situation.

   When we first started dating it really was just like any typical relationship. Within a few months came her first hospital stay when we were together. I wasn't sure how to react or how things would go, but it didnt change a thing for how I felt for her. Two weeks later she came back home and everything was back to normal. Hospitalizations gradually became more frequent from once every 3 or 4 months to every month and now to what seems like she is in there for 2 to 3 weeks, home for a week, and back into the hospital.

   I have been there for surgeries and helping her recover at home many times. It does tend to put a strain on the relationship just because there is a lot of time spent apart with tons of worry and concern on how much longer will I get to be with the love of my life. It does make us appreciate our time together at home a lot more.

   It's also hard to schedule or plan things for the future, because it's not known when she'll be back in the hospital. I do my best to make sure she is happy and does not go without. I utilize the time she is in the hospital to set up small surprises for her when she comes home. That way she knows I'm always thinking about her. I give her everything she wants and needs anything to see her beautiful smile. My biggest worry is losing her as she means more to me than anything in this world.

   Even though it's a tough situation for anyone to be in when you love someone and care for them as much as I do for Sandi you will go through anything side by side until the end of time!

☆I was told by a member of my own family that I am too young to deal with the situation I am in and to leave her while we were dating. Let me just say he is wrong and it couldn't be further from the truth.

   Don't get me wrong it is difficult, but I am able to stay strong and we go through this together day by day! I feel that the strength I am able to show and put out reflects very well and it helps her to stay strong and continue to fight. I refuse to let her give up or slow down. Sandi is a fighter and will continue to be one. I love you Sandi, we can do this!

Derinda - My big sister
  Me being 10 years older than Sandi it was kinda hard seeing her get all the attention and not really knowing why for the longest time. I felt jealous, neglected, unwanted and all kinds of negative things, although I wasn't it was hard. As I grew to kinda understand the problem and the disease I let go of those feelings and was amazed at how strong she is for as tiny as she is.

   Yeah, I was still kinda jealous of all the attention she got, but I was and am a big part of giving that attention. I remember giving her, her breathing treatments and helping her count her pills.

☆Apple sauce was it's own food group in our home. As it was easier for her to take all of her medication mixed in it than it was to swallow many large capsules.

  I guess growing up I felt she was a spoiled rotten brat and now that I'm grown I know she is. Just a brat who deserves to be spoiled. Now, I'm only jealous of how strong my baby sister is, I wish I had half the courage that she does.

Everyone handles diseases differently including your siblings and friends. Not one person is wrong for thier feelings and ways of dealing with CF. Just remember that CF includes so many people, not just the patient.

Not alone,
  Sandi

For me about Cystic Fibrosis, my story, or random CF tidbits find me on Facebook.

Always Smile