Been A Little Bit

Hello World!

I bet you thought I forgot about you..... NOPE!

Just been been busying. February just flew by. Turned out to be an up and down month for me. I'm not working anymore, but the job search. Still hopeful I find something perfect. I liked working at Petco, but the people there just weren't for me. Not sure what I want to be when I grow up so I'm still searching. It would be great to find a job where I could actually use my college degree. Its not easy putting together a resume when I haven't worked in so long. Right after I graduated in May 2009 I ended up in a coma in Sept.... so needless so say there is no experience here haha. I could change a dressing, distribute meds oral and IV, show you have to shower/bath without getting IVs wet, administer feeding, set up IV or Feed Tube pump, change a mickey button, use a bipap machine, count calories, eat til I puke then eat again because I just wasted all those calories, handle a coughing attack which leads to puking while driving, But those aren't really skills people want on an application. So I feel a little stuck. I just need one person to take a chance on me. I'm a good worker, its in my blood!

I also celebrated my 27th birthday this month! So awesome. One of my best friends happen to have a birthday 2 days after mines. So we did a joint birthday bash. It was fun. Lots of laughs, yelling, game playing, and just a smidge bit of drinking. It was great. One of my other best friends took me out to dinner on my birthday too. That was fun, got to meet a lot of new people and eat CHINESE FOOD!
So thankful to celebrate my 27th birthday. In Sept 2009, the doctors weren't sure I was going to make it out of that coma, so Feb 2010 was my 24th birthday, I was so so so thankful for that day and since then my birthday wish was always to just make it to the next one, just give me one more year. Since I got my transplant in July 2012, I'm free to wish a little bigger this year. For that reason alone I'm forever in debt to my donor. They saved my life.

Birthday Shots!

My Dream Team!



Oh hey, I signed up for my first 5K ever.

Yes, me, I really did it. A good friend named Gabe, who also happens to have CF and also happens to be less than a yr post transplant and bulletproof, asked me if I would do this with him. I was really not sure at first. I have NEVER been a runner. I usually give people with "run for fun" grief. So I mentioned to a few people I was thinking about doing this and everyone one of them said I was nuts and no way could I do it.... so I committed that day. Don't ever tell me something is crazy and I can't do it. Do you just meet me? Read MY story. Don't doubt me. Ever. I can and will complete this race. Will I be able to run the whole thing, probably not. But it won't stop me from trying. I'm a pretty stubborn person when it comes to these things. I don't like to quit, take the easy, or worse not ever try. That's just not me and never has been.

Ever pre-transplant when I had an oxygen tank to lug around, tube feeds to do, and a wheelchair I went boating, attempted hiking, little bit of swimming - all that junk wasn't going to stop me then. Nothing can stop me now.

Live it up, Laugh at yourself, Be kind to others, and Dream the impossible.

Oh and happy 30th birthday to my brother Jason!!! You're my favorite red-head!

 

And check out Gabe's Blog, also called Breathe Easy! https://gwpoland.wordpress.com/

 

Breathe Easy

We Got This

Hello World!

Its been a while and my, my, my life sure is interesting.

I had my 6 month post transplant check up. Everything went great. I had to update a few extra tests so I stayed in Cleveland for 4 days. One of the tests was a PH probe. If you've never had one it can be done in 2 ways. A BRAVO, where they sedate you and attach this small monitor to your throat - you don't feel it - and it monitors your acid reflux. And the most common way is threading a small tube through your nose and down your throat. I of course experienced the tube, SUCKS! It doesn't bother some people, I found it very annoying and made it hard to swallow solid foods. The food felt like it would tug on the tube when it passed by. Ugh!! I almost choked swallowing my pills! haha. Thankfully the results came back great and I'm all set for a few years.

My PFTs, Lung Function Test, was at an amazing 96%! I'm not sure if my old lungs were ever that good. I don't believe I was ever above the 80s. So I'm floored. I'm only 4% away from 100 and that would be AMAZING to hit triple digits.

I think my appetite has hit an all time high, which is great! Maybe I'll actually get some meat on my butt so it doesn't hurt to sit on hard surfaces. I eat 3 meals a day, with a snack between breakfast and lunch, between lunch and dinner, and then I am sometimes hungry 2-3 hours after dinner! I can eat an entire small 12inch pizza by myself and still be hungry. That may sound piggish but I'm coming from a position on half a slice would be enough for the day. I love food, I LOVE cooking these days! My Dad is awesome in teaching my his techniques and recipes. I probably call him 3-4 times a week for cooking tips. Cooking has definitely given my something to be proud of again.

My job is going well. I love it there. I'm only part time so naturally I wish I had more hours. But I think for just having a transplant 6 months ago, I'm doing pretty good. So I need to keep that into perspective and not push to hard and cause any sickness for myself. Its tough because I just want to go go go.

News on the Dad front is murky. His cancer is spreading. He went in house last week to have 2 small tumors removed off his liver and when they got in there the cancer had taken over his entire liver. In 2 weeks they had gone from small tumors to his whole liver, that's fast. They have also found markers in his blood stream. This is dangerous because the cancer can now land anywhere in his body. As a family we kind of thought we had done all we could, we have tried EVERYTHING they have thrown at us. And his oncologist basically told us, there is nothing left to try. Well thankfully my Dad's oncologist is leaving for another hospital so my Dads complicated and rare case got switched to the head of the oncology department. This gentlemen gave hope back to our family. He said there are 2 new drugs that just came out recently we can try, and also try Chemo again - which did hold off his cancer for 3 years! When my Dad was first diagnosed in July 2009, it was 6months-1year. Check him out now... 3 1/2 years later! So Suck It Cancer! We are all hopeful for the new therapies.

As a family, WE GOT THIS!

Breathe Easy

2012, It was a Roller Coaster

Hello World!

2012 was certainly a roller coaster of a year for me. I spent 2011-2012 New Years in the hospital. And things just got worse and worse as the year went on. I became almost immobile. Using a wheelchair for more things than I wanted to. I would be so exhausted, I'd sleep all the time. I would be in the hospital for 2 weeks and home for 1 then right back in house. By early July I was so sick and weak and lonely and sad and anxious and depressed and losing hope fast that I would make to my 27th birthday.

Then July 22, that magical day, 2 years, 2 months, and 2 days of waiting my beautiful donor graced me with a perfect pair of lungs. My year completely did a 180. Recovering from transplant surgery wasn't easy but after the last few years it felt like a cake walk most days. Sure I had to rebuild a lot of lost muscle, which I'm still working on, but the ability to breathe like a "normal" person is something I can't explain into words.

They say you don't know what you're missing if you've never had it. So the feeling of a "normal" breathe isn't something I can say I missed because I've never had that. When I was finally discharged from the hospital and walked out doors and the sun was shinning, I took the deepest breathe I could and just savored the moment. Its a moment I will NEVER forget. I understand that over time I could take that feeling for granted, but I hope I never do. At the risk of sounding corny, I have to remind people to take pleasure in the small everyday things. They really do mean more.

2012 was a roller coaster for my entire family as well. My Dad went through a very risky surgery to remove his cancer. The surgery was successful but his recovery was long and hard and he is still working on it. He had to start radiation because although all the cancer tumors were gone, they found cancer cells in his body. Most recently my Dad had a major infection. He developed a large abscess and needed to have it drained. When the Dr's put the drain tube in infection leak into his body and caused Septic Storm. Right now he is recovering from that and waiting to hear what the next step will be against this cancer shit. My Dad and the rest of us aren't giving up beating this thing back. Its just taking more power than we anticipated.

My older brother, Jason, who has Cystic Fibrosis too, has had a rough year. He has always been pretty good with his CF and hasn't needed much help from hospital stays and the heavy duty drugs. But in the fall he experienced bleeding in his lungs. He developed a small spot from his aorta that was leaking blood into his lungs. He had to have a dangerous surgery to fix it. They threaded a catheter in his legs up to his lungs and then "glued" the spot shut. They told his he could become paralyzed, have a collapsed lung, brain damage or die if things went wrong. And our CF hospital had only ever done this surgery on 3 other CF people. Luckily the surgery went well and fixed the problem. He had to layed up in the hospital for a week or so but it did the trick.

My younger brother, Ryan, had an uneventful year. He doesn't have CF. But he did have to witness his father suffer from cancer and both his siblings struggle with CF. He really stepped up to the plate and helped us all out. He became a huge support for me in Cleveland and I know he was a support for Jason and my Dad.

As for my Mother. There is just too much to say about her. Shes fantastic. The rock I lean on for EVERYTHING. And the glue that holds this entire family together. She sacrificed her time and sleep to be at the hospital for myself, dad and brother. She flew/drove back and forth from Cleveland to New Hampshire from July-September. She is such an incredible woman. And she suffered a lot of stress this year especially going through 3 life threatening surgeries in 2 months. She is just amazing. A "thank you" is not enough for her. She deserves it all and I intend on trying to give her just that.

2012 was a crazy year for me and my family. Here's to 2013 which will no doubt bring better things. Our family has gone through enough the last 3 years. It needs and wants a break.

I thank and love each one of you that took the time to wish me well, ask me how I'm doing, share a joke, send a funny picture, hope good things for me, and just keep my spirits up through it all. I really don't know where I'd be without you. Doesn't matter if you're just an internet friend and someone I've known forever. I am truly appreciative of all of you. You make me who I am and help keep in the right light. Much love and many thanks.

To my donor, you have made the biggest impact on my life. Thanks is not enough and never will be enough. I promise to you to live life, respect life, pay it forward, and forever celebrate your life on July 22. I truly believe I wouldn't be here today without you. You saved my life and gave me back to my family and friends. You will forever hold a special place in my heart and I can't wait to meet you in heaven many, many years from now.

To paraphrase Justin Bieber "It's a big big world, It's easy to get lost in it, And I'm not ready to call it quits, I know it's hard, believe me, That we can't go nowhere but up"

2013, I'm ready.

Breathe Easy

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