Seaworld

Hello World!

Well I did it. Took my first vacation post transplant.... Other then back to Ohio. I went to Florida to visit some of my family. These family memebers were here in New Hampshire back in August, but I was in Ohio still recovering.

We - Mom, Dad, Gram, and Cousin came too! - flew down to Orlando for a few days. It was soooo great. We only went down for a weekend, so Saturday we went to Seaworld and Sunday we hung by the pool.

My first night there.... BANANA DAIQUIRI! It was so yum. After my family met us at the hotel I got thrust into a world of children! I'm not complaining, its why we went.

Brett and Grace have 4 great kids. I met their oldest a long time ago when she was just a baby. And about a year or so ago I met the 2nd oldest when she and Brett came to visit. But it was my first time meeting the 2 youngest ones. And my gosh, I just loved them immediately!

Instantly, Ethan the youngest at 3, became my best buddy. Hes the only boy with 3 older sisters. They are all such sweet kids. They just met me and would just walk up to me and say I love you. Melts your heart. And there is nothing like a little hand wanting to hold yours.

Seaworld was amazing of course. I hadn't been there since I was little. Still facinates me. Best part was none of the kids had ever been there, Grace had never been there, and my cousin Danielle had never been there! A lot of firsts and so awesome to be there with them.

Of course traveling through an amusment park with a large group can be stressful, especially with 4 littles from 8-3 yrs old. But when I was on the merry-go-round with Ember, 4, her first time there and it started to move. Her face lit up! I immediately went stressfree and thought this is why I'm down here. This is what its all about. I had that moment again watching the Shamu show. When the whales first jumped out of the water Ember and Trinity, 6, mouths dropped! They where star-struck. The giggles that came from all 4 of the kids in the spinny cups. It just melts your heart.

I just love my family. Its a shame they live in Florida so I don't see them very often. But I miss them. I miss those faces, giggles, little hands, and small I love yous.

Me n Tierney

Trinity, Ember n Me

Ethan n Grace

Ember, lovin' the merry-go-round

4 Littles in 1 Cup!

 

 

Breathe Easy

 

 

So Grateful

Hello World!

I know its been a while since I lasted posted. Part of it is because I'm out and about a lot and then I also don't really know what to say.But over the last few weeks I've had a roller coaster time.

I made my first Cystic Fibrosis speech or talk. My area has an annual CF Family and Friends night, with dinner and speakers, and we go over what was discuss at the big CF Conference and many of the vendors that make CF products come out to show case new things and give samples (Free Enzymes!!). This year I was asked to share my "story" about transplant. I was super nervous, I don't speak in front of people. But I sucked it up and it turned out really well. I was much better at the answering of questions after then the actual speech/talk. I would even consider doing it again.

I've been on the job hunt. As many people know thats not easy these days. I also have the added fact that my resume says I haven't worked since 2008. Which is true but due to my CF. And you have to becareful what you reveal on applications, yada-yada-yada. It just sucks.

I did however land an "as-needed" job as a Pet Sitter. So thats a step in the right direction. Still looking for something with longevity and I don't know, benefits!, haha. But I believe it will come. And if not I'll live off my parents forever, Hi Mom and Dad :).

A giant bummer hit me yesterday. I have always wanted children. I've known since I was 15 years old kids were in my future. I was too sick pretransplant to EVER care for a child, could barely care for myself. So a big motivator throughout my waiting and recovery was the idea I would be able to have children. Some CF woman can't carry babies because they are just small and sick. It can be done, but its risky. So already knew I wouldn't carry a child myself, but I wanted to harvest my eggs and use a surrogate. I talked to my transplant team about it and it was decided the shots you have to take to boost your ovaries are too risky for me. They don't mix well with some of my mandatory medications. There are also some serious side effects that could occur, from the simple nausea to liver, kidney, or respiratory failure. So thats awesome, get new lungs then get respiratory failure.

All the wind in my sail was taken away. Having a baby was my driving force to get better and stay better! And I know there are other options. But having that option taken from me? Its heartbreaking. Of course I wanted a little mini-me, a little one that shared my DNA. I think most Moms and Dads want that. While I feel deflated at the moment, it isn't going to stop me from having that family I want. I can't dwell on things I can't change. I just need to switch from Plan A to Plan B... and I go to Plan C or D if I have too. But I will make it work. My life can't be complete without it, so its not an option to "fail."

Ontop of everything, tomorrow, November 22nd is not only Thanksgiving BUUUTT my 4 month Transplant Anniversary!! What a great day for it to fall on. I'm so thankful for my family and friends. But I'm so, so. so grateful to my donor. I can't put into words just how thankful I am to my donor. I don't know anything about them (yet), but I know they made the most powerful decision they could. They decided to be an organ donor. They had the kindness in their heart to pass on the gift of life once they were gone. They will ALWAYS be apart of me. Not just physically but in my heart. Their gift to me has made me a better person. I take them with me everyday, with every breathe I take or task I accomplish that wasn't possible before I owe to them. They saved my life. They gave me a second chance to experience the world. Because of that I feel its my duty to live life to the fullest. To laugh 10x more then cry. To try and try and try and never let something stop me because its hard. My donor and their amazing family that respected their wishes are forever part of my family now. Even if I never get to meet or speak to them in person, they have a very safe place in my heart.

"In everyone's life, at some time, our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit.” -AS

Breathe Easy

Learning Patience

Hey World!

So I'm quickly learning patience in life.

I'm feeling great these days. Just plain awesome. But because I'm feeling so great I want to do alllllll these things, that I just can't yet. I want to work - not yet, I want to live on my own - not yet, but hopefully changing soon, deal is still up in the air -And I really want more than anything else to have a baby!!!! That's definitely not happening right away.

And that one sucks the most. My whole motivation behind transplant was to be able to have kids. I've know since I was 15/16 that I wanted kids. 25 was my goal age to reach then go forward with things - Yes I can do this on my own, no guy needed! :) - But that year came and went, now 26 and I'm almost 27. What is happening!!?!? I know, I know, some of you will say "oh but your so young, you have time." Not the point. I know what I want and I'm an instant gratification person, so obviously I want it now. I'm sick of waiting!!!

I can't start working in January. And hopefully in a few weeks I'll find out about the living situation, I'll either be on my own or in my parents basement still. Soooo if those things happen HOPEFULLY by this time next year I'll be on my baby mission!

So things are moving, just slower than I want. Patience. Learning to love it - or atleast accept it.

Breathe Easy

BooYah

Hello World!

Well people I just got back from Cleveland. I completed my 3rd bronchoscopy! Don't have the results back but I'm thinking 'no rejection!!'  Also did some PFTs and my numbers are 75%. BooYah!! Weight is staying stable soooo I GET TO HAVE MY FEEDING TUBE OUT!!! Double BooYah!!! So overall great visit. No complaints or problems in the Transplant world!

This weekend I'll be venturing into the world and attending my first Oktoberfest. Should be a good time with my friends. It nice to be able to make plans for the future and not be terrified I'll be in the hospital when the date rolls around.  Its the simple things.

Oh man, I got asked to speak at my local CF Family and Friends night. Should be interesting since I'm not a great public speaker. Then there is also do I invite my friends to make me more nervous or not, hmmmm. We'll see, its not until November so I got a little time.

On a random note today, my Mother decided at breakfast today to turn to me and say "Ya know, 3 years ago you were in a coma." Well, thanks Ma. Haha. I am very grateful to be here today. No ifs, ands, or buts about it!

"Some days are for learning the lessons, and some days are for counting the blessings. Be grateful for both. Things change, but the sun always rises the next day." -SG

Breathe Easy

Home!

Hello World!

Well I did it folks! I'm hommeee!!! 603 baby! Woo Woo!

So glad to be home, can't even express it into words. Never thought I'd miss this little boring town. Don't get me wrong, Cleveland is a wonderful place. Nice people, great hospital, great weather. The only thing I didn't like was the cigarette butts all over the ground! If you are going to smoke, which is disgusting in itself, could you at least throw your butts in the trash! Gosh, pull it together tobacco junkies!  Seeing my dog has been the highlight! Well seeing the whole pack really. And my family. And my friends. So really just everything haha.

Now starts the journey on a new path. One that is hopefully a little easier.

Its taken me a while to write on here cause I really didn't know what to say, I still don't! Ha. So for the past few weeks I've just been rejoining the world of the living. I've been visiting the extended family and friends. Starting to take up cooking. Just doing everyday things I haven't been able to do in a long time. So grateful.

I'm going to Cleveland this coming week. I have my 3rd Broncoscope on Oct 1st. I'm expecting and hoping it goes well like the first 2 and all results come back as no rejection. I got asked today to speak at our annual CF Family night. I'm so nervous. Public Speaking isn't my forte. I had to take it twice in college hahaha. So it should be interesting.

Otherwise nothing that exciting to report. Life is pleasantly boring at the moment. No complaints for me!

Breathe Easy

1 Month

Hello World!

Well today, August 22nd makes 1 month post transplant!!! AWESOMEEEEEEE!!!!!

I had a check up today and I'm doing great. Chest x-ray's look great, and everything is healing on schedule. Best part my PFTs, (Pulmonary Function Test) were at 66%!! Woooooooo!!!! Pre-transplant my PFTs were 17-20% on a good day. So it feels amazing to be able to take a deep breath. It has been so long since I've really felt my whole chest fill with air when I breathe in. I'm told that between 3-6 months is when my new lungs should plateau at their maximum capacity. My goal is 70% but anything higher would be stellar!

It still blows my mind when I wake up in the morning and I don't have to have a coughing session, followed by catching breath, and then usually more coughing. I can just wake up and get up! It was taking me at least an hour to get ready to go anywhere now, I can be out the door in 5-10 minutes. Everyday I am just so excited to start enjoying life again. I did as much as I could before but I still missed out on a lot. I feel like I have to make up for lost time and nothing is going to stand in my way. I'm going to push myself - sometimes too much. But its a learning process.

I still get frustrated with myself because stairs and inclines are hard, ok very hard. I have to keep reminding myself that I hadn't been able to walk really for most of 2012. And even before that exercise was really limited. The doctors and Physical Therapists are always telling me I'm doing great and not worry it will get easier. But I'm just impatient I guess. Rebuilding muscle is sooo HARD! Once its gone, it takes a lot to bring it back. So that would have to big my biggest frustration/complaint. I'm ready go... so my muscles need to get on board!

In other news, My Dad is doing well. He had major surgery to remove his cancer on Aug 17th. He is still in house but was finally allowed to eat Popsicles and broth today. Which he was thrilled about. Ice chips just weren't doing it, and I can agree! He is doing really well, the doctors said they got all the cancer. The only problem is a small portion of his right lung collapsed which caused him to be short of breath and require extra oxygen. He was on 4L and they have tapered him down 2L. The docs said tomorrow he may get to come off it all together. But his spirits are high and "enjoying" the hospital as much as you can, haha.

One last note, Thank you, thank you, thank you to my donor! Those words don't mean enough for what you have given me. Your generosity has impacted my life in bigger ways than I could imagine. You gave the ultimate gift and I promise to treat this precious gift with care and keep myself as healthy as possible. I plan on doing amazing things. Nothing can stop me now. And everywhere I go and everything I do, I'm taking a small piece (literally) of you with me. You will NEVER be forgotten.

Breathe Easy

Doing Great

Hello World!

Well its been 4 weeks and 2 days and I'm still going strong! Got my first bronch results back, NO REJECTION! So thats awesome. I also got my last 2 drain tubes pulled out today. Thats awesome as well. The only tube I got left in me is my feeding tube!!! Which I'll keep for a few more months, even though I'm not using it anymore. The Doctors want me to keep it in just in case. I'm soooo close to being tube free!!!!

As for my Dad, he is doing as well as can be for the surgery he had. The doctors said they got ALL the caner though! Yayy!! He is in a lot of pain and still isn't allowed to eat anything. I got to talk to him and that was great. Hopefully he won't have to be cooped up in the hospital too long.

My Mom has gone back to New Hampshire to be with my Dad. She'll come back when my Dad is on his feet. So in the mean time I've had 2 friends come stay with me and now my brother is staying with me. I miss my Mom though. Its a little weird to be in Cleveland without her. We are very close. BUT having my friends here was def fun. Like a mini vaca! And then having my brother here is nice, I was really missing my family.

Overall I'm doing great and my Dad is doing well. We couldn't ask for anything more!

"Guess illness is slowly but surely learning to not waste its time messing with the Benjamin family." - Phillip

Breathe Easy

My Dad

Hello World!

Ok friends I need you to shift all the good thoughts and prayers and kind words from me to my Dad. As I've mentioned before he has stage 4 colorectal cancer that has also spread to his liver. Today he is going to have his 1st surgery to place some kind of mesh net near his heart to catch blood clots. Then tomorrow he has his big surgery.

He is going to have surgery to try and remove the few tumors that are left on his liver and a small tumor left in his colon. All the other tumors miraculously shrank and disappeared over the past 3 years of chemo.

Originally the doctors told my Dad he would never be able to have an operation because the cancer was so advance. Basically he was only suppose to survive about 1.5 years. So the doctors are amazed how well he is still doing. And if the surgery goes perfectly my Dad will be cancer free!!!

That's amazing! Cancer free, after being told 1.5 years! There is always a chance the cancer could come back but that could be months or years even! Imagine a death sentence basically to freedom again!

That sad part is I'm stuck in Cleveland and can't be with him. So my heart is a little broken. My family is close and I wish I was there. Being so far away is not easy. But I know he is in good hands and going to do wonderfully!

First I get my lungs and now he may be cancer free.... We are kickin some booty in this family! We don't give up and never stop fighting. Its not in our blood.

I love my Dad.

Breathe Easy

Small Hiccup

Hello World!

Well I had my first post transplant hiccup on Saturday night. I was just doing my regular med routine at night, just finished my breathing treatments and did my home spirometry test. Then BAM! My heart rate sky rockets! And when I say say sky rockets I mean, 205 beats per minute!!!

I thought my heart was going to beat out of my chest! I tried some relaxed breathing and nothing worked. So I had to place a call to my docs and of course off to the Emergency Room I went! After about 45minutes my heart rate was still 190ish with no sign of slowing down.

So it was decided that I needed my heart stopped and then started again..... WHAT?!? Stopping my heart, that seems extreme and dangerous! But it was really the only option, nothing else was working.

They were going to use some drug called Adenapryl (not sure that's the actual name). They send it through an IV and it last about 5 seconds and is then flushed out. I was told it feels like when you ride a roller coaster..... WRONGGGG!!!!!!!

It was scary, I'm pretty sure that's what it feels like to die. The room got dark and things slowed and it was hard to have my eyes open. An awful, awful, awful feeling. I didn't like any part of it.

Thankfully it worked so they only had to do it once. I hope my heart never does that again. I haven't had any problems since. The doctors still aren't sure exactly what caused the increase in the first place.

So now that I have had that little scare, I'm hoping for smooth sailing!!

Breathe Easy

It happened!!

Hello World!

IT HAPPENED!!!!!!!

All the complaining worked! I got that magical call! it was 4:30pm on Saturday July 21 when Cleveland gave me an initial phone call and the ball started rolling. By 9:30pm I was on a Medical Jet headed to surgery. I arrived in Ohio around 11pm and was off to surgery by midnight. The last time I remember seeing on the clock before I was out cold from sedation was 12:26am Sunday July 22, 2012!!

Ambulance ride to the airport

My medical Jet!

I don't remember much but I hear my surgery went really well. My new lungs took to my body right away and I had no problems. I don't remember the rest of Sunday and most of Monday but by Monday afternoon/evening I was coming off the ventilator!! So by Monday night I was officially breathing on my own.... with the help of some 02. Not a lot but a few liters to just help my new lungs get going.

On Tuesday I had my first 2 chest tubes pulled out. This was a great relief and a great pain all at once. It didn't hurt so much when they pulled the tubes out but when they had to sew the incision holes up that hurt like hell! Lets get real I screamed and cried. It was pretty painful.

Had a little trouble with the IVs

my first "meal" in the ICU

On Wednesday I moved out of the ICU and onto the regular transplant floor. I took my first steps Wednesday too! My legs felt like jelly and cement all at once. They were super wobbly but felt heavy because I hadn't used them in so many days.

Thursday and Friday blur together with getting into a new pill routine. Lots of pills throughout the day. Remembering everything is hard. Caught up on much needed sleep too. The adrenaline and everything starts to wear off and wow I was just hit with a wall of tiredness. Did more walking and really started to stretch these new lungs.

My first attempt at walking!

July 29th was 1 week post transplant. I am feeling GREAT!!! I have more energy now than I have had in years. Things are going so well. Moving really fast. I'm still in a little bit of shock about everything. Its such a whirlwind few weeks. Aug 2nd I got to leave the hospital! I still have 2 chest tubes in but they are coming out soon! I have to stay in the Cleveland area for a while but I'm out of the hospital, living life!!

Bye bye hospital!

Many people have asked me about the donor and all I can say is I don't know anything about them yet. I don't know age, male/female, where they came from, none of that. But I am INCREDIBLY grateful for them. And they will forever hold a place in my heart. They gave themselves so people like me could get to live again. There is no greater gift than the gift of life. I feel very blessed/lucky/fortunate. Words can't explain how I truly feel. And I promise to make the most out of this second chance. Nothing can stop me now!!

Also I've been asked where I'm staying and right now my current residency is...



Jessica Benjamin - Room 309
Cleveland Clinic Intercontinental Suite Hotel
8800 Euclid Avenue
Cleveland, OH 44195

Thanks to EVERYONE for all your kind words and thoughts. I really appreciate them and they mean a lot to me. You were my support pre transplant and I love all the support post transplant!

Breathe Easy

The Little Things

Hello World!

Living with Cystic Fibrosis, or any chronic illness really, makes you appreciate the little things more. I know a lot of other people say that but its true. I never really gave it much thought until I was 16/17. When you're young you don't really have  a long term vision of life. Everything is all fun and play, not a lot of responsibility. Well for most kids anyway. It isn't until they hit 15/16/17 that responsibility starts to really creep in and you take notice.

Now that I'm in "end stage Cystic Fibrosis" - which I hate to say or write - there are sooo many really little things I appreciate. Because of where I am in my lung disease I am incredibly dependent on my parents -financially, physically, emotionally. I really never thought THIS would be my life at 26. But it is and I take it all with a grain of salt!

There other day I went grocery shopping - alone! - for the first time since probably February/March. Most people bitch and moan about having to go to the store but I was so excited to do this on my own again. A trip to the grocery store involves making a list - so I'm not wandering too long, packing up the oxygen and figuring out how I'm going to push a shopping cart AND pull an O2 tank. So needless to say it takes a little finagling and some work. Work I'm willing to do and figure out. It took me about an hour and a half to do the whole trip. I was SO exhausted but felt so accomplished after. It was great.

There are lots of things I can't do anymore and hopefully one day - after transplant - I will again. Working is one of them. I'm on Disability so I have a small fixed income. I always TRY - being the key word - to live within those means each month. Thankfully I have my parents to help me out when I can't. In a few months I'll hopefully start paying for my own car insurance. I'm super excited - stupid I know. What a step into adulthood! Leaving my parents plan and starting my own. It will be wonderful. Finally a real step into independence!

So while you all complain about paying your bills I'm excited to have the responsibility to pay mine!

Look out world, I'm growing up!

Breathe Easy

Going Well

Hello World!

Hope everyone, or all my fellow Americans, had a great 4th of July. Mine was nice. Spent it with my parents, Ate some lobster, and comforted Tucker who was terrified of the fireworks. Overall a good holiday.

Made a trip out to Ohio a few weeks ago for routine pretransplant check-up stuff. Everything went well, no changes really. Still just a waiting game. My overall health is good at the moment. I would say I'm on the up side of this roller coaster ride at moment.

Got to see one of my best friends this weekend! It was great. I have 4 close/best friends. 1 lives in Washington DC, 1 lives in CT, 1 lives in Maine, and the other splits her time between here and Boston. So needless to say they are out of town a lot. So it was great to see my friend this weekend. We laughed A LOT. Took stupid pictures, made fun of each other, gossiped, ate junk food, and watched movies. It was perfect!

Hoping to have some news about my Dad soon! I can't wait to share!

Breathe Easy



Dad

Hello World!

Happy Father's Day!

I of course have the best Dad in the world. If it weren't for him I would be eating spaghetti-o's and mac and cheese everyday. We have the same sense of humor and both love Ellen. Sometimes I call him dad, or pops, pa, papito, poppa-dilly.... just whatever I really come up with. He doesn't mind, haha.

Right now he is battling stage 4 colorectal cancer. He was diagnosed in June 2009. He goes to chemotherapy every week. He hates every second of it! But its keeping him alive, so he tolerates it. He is a fighter. Even his doctor has said he is amazed at how well my dad is tolerating everything. The phrase "living on borrowed time" has been thrown out there. So I am incredibly grateful for everyday I have with him. Even on the days I do nothing but complain about him. I'm still thankful he is around for me to complain about.

With this cancer we (as a family) don't really know how long my dad will be with us. Right now he is doing good, and we are hoping for some good news in the next few months. But I'll share more on that as we get closer.

So today we just had a family day. My brothers came to the lake house. My dad and I stay there all the time in the summer because we are both "disabled." So the bros will come up on the weekends they don't work as well as my Mom. Played some card games (still Skip-Bo Champ!), ate some good food (FroYo Baby!), played some mini golf, played some ladder ball, drank, and laughed a lot. It was a great weekend.

Now its Sunday night. And the house is quiet again, just me, my dad and Tucker.

Breathe Easy

Feeling Better

Hello World!

Well 2012 you are not really working for me yet?! Whats the deal. Its July and I've got nothing to show for this year! Oye!! I need some good things to happen.

Well still in the hospital, getting out on Friday though. YAYYYY!!!! I am feeling MUCH better. When I first came into this admission I could barely breathe. I've never felt so short of breath before. I was using my BiPap in the middle of the day just to force air into my lungs because I felt I just couldn't take a deep breath. I was just thinking if this is how things are going to go from now on, I don't know how I would handle that.

Thankfully I don't have to cross that bridge yet. I just gave it a look and decided it was to scary to cross yet. So very glad I'm feeling better. I have another trip to Cleveland in 2 weeks. Not looking forward to being poked and having another ABG but I'm excited to get out of this state for a few days. It is the only kind of 'vacation' I get. Can't wait!

Many people have asked why is it taking so long for me to get lungs. The only answer I can offer you, is what I'm told every time I ask. Its my size. I'm a tiny person only 5 feet tall. My body size is really more of an average 15-16 year old. The problem with that organ donators who are under 18 their organs only go to other under 18 year olds. Which is great, keeps children and adults off the same lists. But at the same time a bummer for me because I'm small. I also have my blood type working against me. I have a rare type, not the rarest, thank God, but still rare enough to cause a delay in the process.

So I'm patiently waiting for all my stars to align. Hopefully it'll be soon. I'm tired of living a limited life. I want more!!!!

Anywho, the 'rest' of my life (not CF related) is doing well. I just finished my final unit of my Dog Training Certification. So I'm super stoked about that. Although now I have to find something else to do. I'm gearing up to be in my cousins wedding. I'm a bridesmaid!!! I went a few weeks ago to get my dress, its beautiful! I'm excited to wear it. The color is great too, a malibu blue. AND the best part she picked out flats for us to wear... AWESOME!! As much as I love heels, I think they are sexy and look great, I can't wear 'em! I look ridiculous trying to walk in heels. My Dad was lovely and once told me I looked like I was holding in a poop while walking. Thanks Dad, you are magical sometimes! Hahaha.

Speaking of my Dad, I am hoping to have good news to share about him in the coming months. I'm not going to talk about it at the moment because I don't want to jinks any good things that may be coming his way. So fingerscrossed!

Breathe Easy

Update

Hello World!

The boat is in the water, summer is here!!!! For me anyway, haha.

Hope everyone had a great Memorial Day Weekend. We had great weather. Perfect for the lake. My brothers came up to the lake house and it was nice. The 5 of us just hung out and played games and ate great food. It was nice to have just the 5 of us, its been a while since thats happend.

On the health front I'm back in the hospital. BOOOOO!! But it was much needed. I was having lots of trouble breathing. I'm day 3 of IVs and I'm already starting to feel better. So thats great. Hopefully the 2 weeks goes by fast.

I go back to Cleveland in a few weeks for Transplant check up. As much as I hate the poking and proding of these Transplant trips I do like going. Driving to Cleveland and back is the only vacation I've had in a long time! The drive is nice too, very easy. Well I don't drive, I'm just the passenger haha. But Vermont and Upstate NY and the brief trip through Penn is lovely. One of these drives we might even detour to Niagra Falls. I've never been! That would be awesome.

Breathe Easy

2 Years of Waiting

Hello World!

Today is 2 years. 2 years of waiting for my transplant. It has been a long 2 years.

When I examine my life now and compare it to this time last year or even 2 years ago it is amazing how much worse I am health wise. This is NOT how I pictured my life at 26.

I'm 26, I should be a few years into a career, in some kind of relationship or at least attempting relationships, living on my own, having my own life. I'm not close to any of those things.

I haven't been able to work since 2008. I haven't even had a quality relationship in years. I still live with and rely 100% on my parents. This is not how things were suppose to be.

I hate to bitch and moan because things could be worse. And I know that. But when they say life's not fair I didn't think it would be this unfair at 26. Its not just being unfair to me but to my parents as well.

I hate cystic fibrosis and I fight it every day. And its hard. But my parents hate it just as much and fight it every day too. Its just as hard for them but in a different way. I always hate when I slip up and say "You don't know what its like to have CF, this isn't easy." Because I also don't know what its like to watch my kid fight this disease and ultimately not be able to do anything for them. They can provide me support emotionally and financially, and they do. They can be there to help me with therapies and medications, and they do. But in the end they can't make CF go away. They can't make CF cut me a break on days I feel like the weight of the world is on my chest. I can't imagine what that's like.

I want and need this transplant not only for myself but for them. They deserve it just as much as I do.

So while this isn't how my parents or I pictured my life at 26 we are taking the good with the bad and forging ahead. There is nothing else we can do. Certainly not going to stop now that we've come this far.

Hopefully in a year, I can look back on this post and say "Wow, You've come along way Jess"

So while the light at the end of the tunnel seems dimmer than ever, I can at least still see the light.

"Win" - Brian McKnight

Breathe Easy

Kidney Surgery

Hello World!

I know its been a while. April was NOT my month.

I went out to Cleveland for Transplant check up at the end of March. A week after coming home, HOSPITAL! I managed to negotiate some freedom for Easter and then days later HOSPITAL!

I also had surgery scheduled to remove a large kidney stone. I went in house a few days early to get some antibiotics running through to help with recovery. Surgery was scheduled for a Tuesday, the Sunday before I was hit with a serious head cold. Sore throat, stuffed nose, coughing galore! IT WAS AWFUL!!! I felt so bad I thought they were going to have to move the surgery. Thankfully they didn't.

So Tuesday came. They used an epidural and sedation for the surgery because I couldn't be put under general anesthesia without the most likely outcome of a ventilator. Once they had me sliced open they realized the stone was bigger than they thought. They had to break it up into 12 pieces. Like 12 pea size pieces. It was a beaut of a stone! I wanted to keep it but they wouldn't let me! Boooo!!!

Overall the surgery went well. Wasn't my favorite thing to have to go through but glad its over. Hopefully no more stones pop up. I do not want to do this again!

 My Drain Tubing

The hole once they pulled the drain tube

I got to wear this snazzy bag for a few days to collect my kidney juice

My first post surgery meal - A Cherry Popsicle

Mama hung out with me overnight

Breathe Easy

Bored and Lonely

Hello World!

WOW AM I BORED OUT OF MY MIND IN THE HOSPITAL!!!

Oye, so I had my meeting with the Urologist about my Kidney stone. Which also included a meeting with the Anesthesiologist. And the consensus is NOOOO!!!! Ha. My lungs are far to shitty to put under general anesthesia. There was talk of doing a spinal-epidural type procedure but I'm no fully on board with that. Anxiety through the roof! SO my CF doctor is going to talk to my Transplant doctor and see if we can hold off until after transplant like we originally wanted to do. Not sure what they'll say.

Otherwise no real updates. I am starting to feel better. But I would be more concerned if I wasn't. I'm incredibly annoyed with the Hospital and their new food-beverage program. Its all LowCal, LowFat, SugarFree. WHAT THE HELL AM I SUPPOSE TO EAT!?!

I miss my home cooked food from my Dad, I miss my dog, I miss watching TV with my Mom. I am bored and lonely. Hopefully I get out of here soon. I'm not sure, mentally, how long I can stay in here. Its like being in isolation!

Breathe Easy

Needed a Break

Hello World!!

I know, I've been slacking in the blogging department. But I needed to withdraw from the internet world for a little bit. Its a great place to meet lots of people but it is still really important to have a life OUTSIDE the internet. I was losing myself too much and my mental health was taking a beating.

I'm very grateful for the CF community I've been lucky enough to become a part of, but hearing all the successful transplant stories lately was really getting to me. I just kept thinking "why not me?!" And I know my life is not anymore valuable than anyone elses, and I know I'll get the call in good time. But waiting is hard. Harder than I ever thought It'd be. I was worrying and stressing so much about 'waiting' I was causing more health problems for myself. I was becoming withdrawn, tired all the time, moody, snippy, and just overall not a fun person to be around.

So at my last CF clinic in Mid-Feb I was talking to my Doctor and we decided to take a break from reading about CF and Transplant for a little while. I needed to come back to reality and just think about me and no one else. Sounds selfish but sometimes thats just what you need to do.

Since my trip to Cleveland Clinic early this week I am feeling so much better!

It was just a routine follow up in Cleveland. They take blood and get my latest PFTS and stuff like that. When I was in taking to the doctor she told me there have been several lung offers come in but they just haven't been good after closer examination. I was so excited! I haven't really heard ANYTHING since being listed. It was so great to hear the lungs with my blood type are actually coming in! My size and blood type work against me. But to hear that there have actually been options really made me feel better. Even though my PFTs were down 8% and my 6 min walk was 400ft shorter than last time, hearing that news made everything better.

It just confirmed that those lungs are coming! And hopefully coming soon! I'm ready, o so ready!

As for right now, I feel like super shit. I'm going into the hospital Monday for some IVs. I'll also be talking with a Urologist about having minor surgery to get this kidney stone out of me. It has been acting up lately, so the Dr said to get it out before it becomes an emergency. So It'll be a fun admission. :/

Breathe Easy

He is the Best

Hello World!

I know I've said it before but I'm going to say it again, I have the BEST dog on the planet. Out of all the dogs we have had, I swear he is the sweetest, most easy going one. Max would be a close second, but Tucker takes the cake. He is just a gentle sole and so easy going.

Being a border collie you would expect him to be off the walls all the time and not content with just lounging around, WRONG! Tucker totally adjusts to my wellness everyday. He knows how I'm feeling before I do. On days I have enerygy, Tucker is there to nudge me into doings things. He keeps me active and on the move. Days I feel crappy and tired he has no problem snuggling in next to me for a day of TV and lounging. He is such a good dog!

In other news, my birthday was GREAT! I spent the day shopping with my Mom and Grandma. Then went out to dinner with my friends. It was really nice. I was going to throw in some lazer tag but I didn't really have enough energy to pull that off. So far being 26 is nice. I did get some AARP mail today... hmm... don't know if I'm ready for that yet. But I'll keep them in mind.

As far as my health goes... well it goes. Feb 20th was 21 months of waiting for transplant. No news there. I have my next Cleveland Check-up March 15th... I wish I would get the call before then. I really don't want another ABG. ITS THE WORST THING ABOUT HAVING TO WAIT! Other than sick of waiting, my health is a roller coaster. Good for a couple weeks then it tanks.

Aside from my health sickness has been running rampamt through my house. Both my parents and my brother have been sick the past few weeks. We are due for some good news.

Breathe Easy

Always Thankful

Hello World!

Its that time of the year again... MY BIRTHDAAYYY!!!! I turn a lovely 26 years of age on February 19th! I can't wait, who doesn't love their birthday?! I don't understand why don't want to celebrate their birthdays when they get older. Your birthday is a day to celebrate and be thankful you made it another year.

When I was born they weren't sure if I'd see 1 year. Then in 2009 I became really sick and it wasn't clear if I'd see 24. So I will continue to celebrate every year, because I'm so thankful to be here. Not everyday is pleasant and some seem unbearable but I would rather have a shitty day then no day.

SO HAPPY BIRTHDAY TO ME!!!!!

As a birthday gift Boston or Cleveland could call meeee..... :)

Breathe Easy

Damn You

Hello World!

Well I'm back in house again. FUN! I was having poopy problems. Wasn't able to go for 3 days! Oye! Stuff was all backed up and it was giving me incredible belly pains. While that was happening my body decided, 'Hey, lets throw in some ridiculous chest pains too.' SO THAT WAS AWESOME! My chest was hurting so bad I couldn't sleep or eat or lay down or virtually move in anyway!!!!! I wanted to die. The Doctors came in and they asked "on a scale of 1-10..." (you know) I said... or semi-screamed "like an 8! 8! Dear God its an 8!!!" I didn't want to say 9 or 10 fearing that would be a "challenge" to my body to cause me more pain. Damn you Cystic Fibrosis, Damn You!

Today is day 4. Chest pain is virtually gone and the poops are under control! :)

I plan on pushing to get myself discharged and finish my IVs at home. I hate it heerreeee!! I'm so bored all day long. So hopefully I'll get out of here early next week and they don't make me stay the full IV run here. Besides I miss Tucker and the other squishy faces. They need me!

So after a few days of getting my butt kicked I'm starting to feel normal again. Now time to decide what I want to do for my Birthday... its 17 days away!!! I'm thinking laser tag... buuutttt not really sure if I can actually do laser tag. Thats a lot of work.... hmmm..... I'll have to think about it.

Oh and I discovered this new game on the Iphone.... Rope n' Fly. I dig it. Check it out!

Breathe Easy

At Our Fingertips

Hello World!

Cystic Fibrosis is a mean disease - I don't think there are any nice ones - but CF has been a real bitch lately. Not just for me but many of my Cysters and Fibros (as we sometimes call each other). Before I joined twitter a few years ago I didn't know anyone, other than my brother, who had CF. Now I know TONS of people. Siblings, friends, parents, and of course CFer's themselves. Its crazy!

Its also bittersweet. They say ignorance is bliss. Well I was never ignorant to Cystic Fibrosis but I was never waist deep in the CF pool either. I was always sitting on the edge with just my toes in the water. I'd hear about stories on the TV news or read about it in the paper. But it was always just "bummer" because they were just names to me. I didn't know them. Sure it was sad to hear about them passing but it didn't really effect me. Now, I talk to other CFer's and people connected to CF everyday, I'm swimming along right beside them.

The last few months have been incredibly hard for the CF community. I have read about several passings.. and I mean several. So many I've lost count! They all seem to be young people too.... 20-30. Come on! Thats my age range! That's scary. Everyday it seems like one of my CF friends are heading to the hospital for a tune-up. I, myself have been like 6 times in the last 2 months. I'm so glad I've met all these great people (the sweet part) through the Internet but reading about someones passing means more to me now (the bitter part).

Whenever I feel like CF is starting to get an edge on me, I love to read "No Ordinary Boxing Match." I'm going for the gold!!

Not Your Ordinary Boxing Match
Having several fatalities under its belt Cystic Fibrosis remains the undefeated champion. Life with CF is like a boxing match. Except the rounds last for months and the fight goes on for years, not just an hour or two. Like a boxer training before and after each fight, we do our training before and after each day. Only instead of being in a gym working out with weights, we're at home taking a handful of pills and doing over an hour a day of nebulized breathing treatments and vest therapy. We fight as hard as we can, but no matter how hard we punch or jab at our opponent, it hits back harder and harder. Then just when we think we have the fight under control and doing good. BAMM! Out of nowhere comes an uppercut, then a right hook and a left and blow after blow. Then just as our opponent has us against the ropes getting ready to deliver the final uppercut to put us out and win, DING! DING! the bell rings. Its the end of the round. Instead of going to our corners to talk to our manager and get some water and clean up, We go to the hospital to talk to our doctors and get some IV antibiotics and get cleaned out. After 2-3 weeks of that, DING! DING! we get out and start next round. Like a boxer going into the round with a little rest and a few jab wounds, we start out strong, then it turns into a repeat of the last round.Then after round after round it is the same thing, like a boxer getting beat up more and more, getting weaker and more tired as each round passes. You keep fighting the best you can. But like a boxer in the final rounds you begin thinking, "Should I give up?" "Should I throw in the towel?" Like a boxer who really wants the champs belt, the answer is no. You keep fighting as hard as you can fight and say to yourself, if my opponent wants to remain the champ, he is going to have to earn it, because we're not going down without giving it our best.

I began my fighting career almost 29 years ago on April 30,1976, the day I was born. Though I know I will not be able to defeat my opponent I know it someday will be defeated and people like me will not have to spend their lives fighting each day they live or for each breathe they take because they will have the cure to defeat the opponent. I just hope they think back to those of us who gave our lives, to be studied and monitored and fights be documented by the CF team so they could find a way to defeat CF and say Thank You. ~ Jamey Carver

This was written by a fellow CFer. He lost his fight against CF on June 3, 2006. While I never knew Jamey, I read about his story on a website that was submitted by his sister, Megan Carver. She wanted to share her brother's inspiring words and create awareness for CF. She continues to fight in Jamey's memory.

To all the CF Angels, we will continue the fight. We have CF up against the ropes with Kaleydeco. A cure for all is at our fingertips.

Breathe Easy

These Times

Hello World!

Most people will say Music helps them through any situation. I'm one of those people. Music is such a powerful form of expression. There is so much emotion in music that you sometimes can't get from written words. There are some many genres of music in the world that it is impossible not to find something that tickles your fancy. I happen to like all kinds of genres, from pop to country to oldies to rock to rap. I like music with a good beat that I can sing along to. I also love a song that tells a story.

Depending on how I'm feeling makes a difference as to what I listen too, like most people. I recently heard a new song called These Times by a band called Safety Suit. I heard this song and immediately thought, "Holy crap, that's my life!" I think that song describes my life as of right now, its EXACTLY how I feel. Its been on repeat for about a week now. So thank you Safety Suit, I love it!

These Times:
These times will try hard to define me
And I'll try to hold my head up high
But I've seen despair here from the inside
And it's got a one track mind

And I have this feeling in my gut now
And I don't know what it is I'll find
Does anybody ever feel like you're always one step behind?

Now I'm sitting alone here in my bed
I'm waiting for an answer I don't know that I'll get
I cannot stand to look in the mirror
I'm failing
I'm telling you these times are hard
But they will

And I know there's someone out there somewhere
Who has it much worse than I do
But I have a dream inside, a perfect life
I'd give anything just to work
It's like I'm only trying to dig my way out
Of all these thing I can't

And I am
Sitting alone here in my bed
I'm waiting for an answer I don't know that I'll get

I cannot stand to look in the mirror
I'm failing
I'm telling you these times are hard
But they will pass,
They will pass
They will pass
These times are hard
But they will

These times will try hard to define me
But I will hold my head up high

Sitting alone here in my bed
I'm waiting for an answer I don't know that I'll get
I cannot stand to look in the mirror
I'm failing
I'm telling you these times are hard
But they will pass

And I know there's a reason
I just keep hoping it wont be long 'til I see it
And maybe if we throw up our hands and believe it!
I'm telling you these times are hard
But they will pass
They will pass
They will pass

These times are hard but they will pass"

Breathe Easy

We Fondued!

Hello World!

HAPPY NEW YEAR!!!!

I'm starting of 2012 in the hospital. My parents came to the hospital and had dinner with me. We did fondue! First a beef broth and had some steak. Then we had chocolate fondue for dessert. It was delish!! I was glad they both came up and visited.

Home is about an hour away so My dad doesn't make it to the hospital very often. Its a long time for him to have to sit in a car. Its a risk every time for blood clots. My mom visits every few days. It helps me keep my sanity.But they both came for dinner and then my mom stayed overnight. It was nice.

We both barely made it to midnight. But we did make it! The next morning we slept in. Had our mid-morning chat with the doctors and then chit-chatted ourselves. Then my mom wheeled me around the hospital on a quest for lunch. She is not a great wheelchair driver haha. She knows it, shes getting better. After lunch we watched a movie. We watched Horrible Bosses. Funny. We were both laughing out loud in the room. It was fun. After the movie she headed back home. It was a good day. Probably the most relaxed day I have had in a long time.

I've been asked by a few people what my resolution for the new year is. I don't have one. the last few months have been really hard. Physically and emotionally, so for 2012 I'm not expecting anything. If I don't expect anything I can't be disappointed, right? I just want my transplant and to start my 'new' life. Nothing more and nothing less. I'm ready.

Breathe Easy