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Tuesday, December 27, 2011

Cleveland Update

Hello World!

Well I went to Cleveland!

SUPER impressed with their hospital, staff and program. We (Me, Ma, and Gram) took 2 days to drive out there. The place we stayed at was part of the Hospital, it was awesome!! Hhaha, I mean they had a phone in the bathroom. It was a really nice place.

The first day was all bloodwork and PFTs. 1st blood test of the day... they took.... drum roll..... 35 TUBES!!I wasn't sure if I would have any blood left in me! Those vampires! Then I had a full Pulmonary Function Test (PFT) work up. The worst part of that was the ABG. Oh my gosh I HATE ABGs!!!! Those are Artial Blood Gas tests for those who don't know. They have to take blood directly from an artery. Usually in the wrist, where your pulse is. But I also found out in Cleveland that they can get it from the pulse in the crease of your arm. Well neither is a pleasant spot. Oh and Cleveland doesn't use lidocaine (numbing medication). I already have anxiety with needles, always have and probably always will. So to say I was upset while they did the ABG in an understatement. I was hysterically crying, almost hyperventilating. It was AWFUL. So the first try, the blood in the needle clotted before they got a big enough sample..... so they had to poke me twice! It was awful, awful, awful. My blood pressure is usually 80/whatever and after the ABG it was 129/whatever..... talk about stressed!

The 2nd day was all radiology type stuff. That day was fairly easy. I had to fast for most of the day so I was hungry all day. I also had to drink this yucky water solution for my CT Scan. It was water with a contrast solution so I glowed during the CT scan, haha. That tasted gross and I had to drink 900ml in 30 minutes. Thats a lot when you don't like the taste. They also had to push some contrast through an IV. That burned, very uncomfortable, it also gave me this sensation like I was peeing! I totally wasn't expecting that and totally though I was peeing myself on the table, haha. I was just thinking crap, another Kmart incident! hahaha. But nope, no pee, just a sensation!

Day three was the Social Worker, Transplant Team, and Surgeon. That day was LONG! The appointments were so spread apart we we there 7am-4:30pm. Those all went well. Really liked everyone I met.

We planned on heading back home the 3rd day, but the last appointment of the day got pushed back by 2 hours so we stayed 1 more night in Cleveland. We left the next morning at 7am and got back to our house around 8-830pm. It was a long day of driving, but we had to be home in time for Christmas! We weren't missing that. Not an option.

Overall it was a great, long 3 days. I'll know, officially, by the 2nd week in January about being on their list. I can't wait.

My gut says my perfect pair is coming Feb/March. 2012 - The year of the Lung!!!

Breathe Easy

Saturday, December 3, 2011


Hello World!

So Its official I WILL be going to Cleveland Clinic in Ohio (I live in New Hampshire) the week before Christmas (12/17-12/23) to meet with their Transplant team and hopefully get on their Transplant list. After that I will be listed at 2 places, so hopefully my chances increase!

I really had a hard time deciding this is REALLY what I wanted. For a few reasons. One being I have to be deactivated from Boston's list while I travel out to Ohio and back. This is because I will be going out of Boston's region. When I get back to NH I will be placed back at the top of the list but for a week I will be considered "inactive." So lungs, DON'T come that week, I don't want to miss you!!

Another reason I struggled a little with this choice is because of my Dad. He has stage 4 colo-rectal cancer and goes to chemo every week for treatment. Well his latest CT scan showed he had a dangerous blood clot in the artery between his heart and lungs. So he is at a HUGE risk of heart attack or the clot moving to his brain. SCARRRYYY!!! He has to start taking Heparin shots in his stomach twice a day to hopefully break up the clot and prevent more. This also means he can't travel to Ohio with us. Well he could be it is not recommended at all! So I and my Mother who will travel with me have to leave him for a week. I know, a week doesn't seem that long but still. I'm very worried something will happen while we are away and there won't be anything we can do about it.

Originally the whole family, parents and brothers were going to come with me to Ohio but now its just going to be my Mom. My brothers and Dad will stay in NH. The thought is that IF I end up getting transplanted in Ohio, so I'll have to stay there for a few months, my brothers and dad will come out then. But for just this week they will stay home and hold down the fort.

Fingers crossed everything goes without a hiccup, but that has not been our family luck lately. So needless to say our house has been filled with some stress these past few weeks. The best thing to happen would just be Boston calls BEFORE I have to leave for Cleveland and I get my Transplant in the next few weeks. That's what I'm really hoping for, but we will see what happens.

I've waited this long for my perfect pair, whats another couple weeks?

Breathe Easy

Tuesday, November 29, 2011

Not Ready

Hello World!

Life has been a little crazy lately.

Working on getting listed at a second hospital for Transplant. Hoping it will increase my chances of getting a fresh slightly used pair.

I typed out several posts... 3 to be exact..... but deleted them all.

I like sharing my thoughts and having people share them right back. But I'm just not ready yet to spill the beans on exactly what is going on inside my crazy head yet.

I do know one thing, I'm very thankful and grateful for my family and friends, and all my Internet friends. The level of support I get from all of you is incredible.

Now I just need to figure what is right for me. The choice is all mine. There is no right or wrong. But I'm at a fork in the road and there are 2 paths. They are different but neither could be a wrong choice. So know I just need to decide which direction I want to travel.

Whichever way I choose I will walk with my head up and take in everything around me.

Breathe Easy

Saturday, November 12, 2011

So Close!

Hello World!


OMG, I was called last night, 11-11-11 at 8:30pm for my Lung Transplant!

I had a panic attack after I hung up with the Doctor and frantically gathered everything I thought I might need if this Transplant was really going to happen. I quickly realized I was no where near prepared as I thought I was, haha. My mind was racing! But my Mom and I hoped in the car and off to the hospital we went.

When I got to the hospital my mind was still a blur and the check-in person asked for my birthday, which I gave, it rolls right off the tongue because they ask SO OFTEN at the doctors. But then she asked how old I was.... drew a complete blank! Hahahhaa I had to turn to my Mom and ask! FACE PALM! Total blonde moment.

For those people not familiar with Transplant protocol, the Doctors always call 2 people in for the organs, just in case the first person isn't compatible. And I person could not be the right fit for lots of reasons. So they always call in a back up. I was back-up!!

I did all the pre-op testing just in case the first person didn't match up exactly. And began to wait. Around 12:30am the Doctor came in and said, not tonight. It was definitely a bummer. I was ready. But it was kind of what I expected. The ride definitely felt REALLY long. I felt like the school bully just popped my balloon.

So I was disappointed that 11-11-11 wasn't the day but this just means I am now number on the list!! Hopefully they get some more lungs in very soon. It would be great to get them before the end of the year. Then I could start 2012 completely new!!! :)

I'm still hopeful. Its coming. Soon.

Breathe Easy

Friday, November 4, 2011

Staying Healthy

Hello World!

I'm freee! I was in the hospital for 14 days!! BORING. But it was needed. I was struggling there for a minute. I feel much better, I really do. While I was in the hospital I missed Halloween again. This is the third Halloween in a row I've missed. 2009 I just came out of a coma, 2010 I was in the hospital and 2011, once again hospital. Thats annoying. I'm not super bummed about it because 1. I don't care that much about Halloween and 2. I would rather miss Halloween and be good for Thanksgiving. Thanksgiving is where its at... FOOD!!! Haha. Love Thanksgiving, probably my favorite holiday, other than my birthday of course. Its all about food and family. Awesome holiday. My brothers went out and celebrated Halloween though. They sent me pictures...
My baby bro as Wilfred, and his lady friend.

My big bro (back middle) and his wife were Jersey Shore people

Me and my pumpkin buddy.

While I was in the hospital New Hampshire got a freak Nor'easter in October!! Dropped 2 feet of snow on people. My house lost power for 5 days. The power was still out when I got released from the hospital so I went and stayed with my Grandma. Although the snow was pretty, I did not enjoy waking up to that. Its too early! We basically went from Summer to Winter! What the F Mother Nature. Most of the snow is thankfully gone. And warmer weather is predicted for the next couple weeks. I can live with that.
The view from my Hospital window the morning after the storm.

Railroad tracks across the street from my G-ma's house.

Trees in my backyard.

Now that I have my freedom back, all my energy is going into STAYING HEALTHY! I'm not thinking of anything else these days. I plan on do a lot of hibernating and staying away from most people this winter. Everyone is always sick with something, even if they don't "feel" sick. I'm sorry its flu season, I don't trust your "feeling." Its all about me this winter!!

Breathe Easy

Friday, October 28, 2011

Love You Through It

Hello World!

Some of you already know but on top of all my medical crap going on, My dad is also fighting Cancer. He has stage 4 Colorectal Cancer and it has spread to his liver and I think there was a small tumor found in his lungs as well. He has been going to Chemotherapy EVERY week since July, 2009. His Cancer cannot be cured. It is apparently a rare form. I don't know a lot about it, just that it sucks. He has been doing pretty well with his Chemo and remains in good spirits most days. I love him. We have the same sense of humor. I know October is Breast Cancer Awareness but other Cancers are just as important. I heard this song the other day - Martina McBride: I'm Going to Love You Through It - Its mainly about Breast Cancer but still makes me think of my Dad. My Mom is the glue that holds the family together and My Dad is the man behind the woman cracking jokes! Together they are the best team, and best parents. Love them both

Breathe Easy

Sunday, October 16, 2011


Hello World!

Life has been a roller coaster these days. Most days I'm me and I feel like nothings change. But some days I just want to roll over and give up! I feel like every time I start to gain any ground with either my weight or lungs the other craps out.

I just went through a month or so of weight problems. Couldn't keep any weight on me. But my lungs were doing fine. They weren't getting better but they we staying stable. I manged to attend 2 weddings, both with minimal oxygen! About 3-4 days after the 2nd wedding CRASH! Lungs decided they didn't want to cooperate anymore. My weight however.... stable. Which is good.

I had the Kmart incident as previously blogged and things are just getting crummier and crummier. Walking just exhausts me. Its so tiring. I go to Pulmonary Rehab and it bums me out a little bit to see I'm not where I was 2 yrs or 1 yr ago. I need more oxygen, I walk slower on the treadmill, I can't go as far either. It just sucks. Stairs and inclines were already hard and now they are almost impossible. Everyone says exercise, exercise, exercise.... especially waiting for transplant. Well I'm trying but it is soooo hard. I really hate it.

I like the easy road and less complicated things. I've always been that way. So its kind of hard for me to get motivated to do the exercises. I know I need to but gosh, I'd like to breathe too!

In other, but related news, I'd like to gripe for a moment at the fact I've been waiting 17 months for transplant. 17! I read on Facebook today a young man listed Thursday and got the call today. 4 DAYS!!!! WHAT THE F!!!! I know my lungs aren't anymore important than his, and believe me I'm happy for him. But come on! I just want it to be my turn!!! The universe could atleast cut me some slack if it won't get me lungs anytime soon. Doesn't have to kick me while I'm already down.


I'm tiring of my life being on hold! I want to do things... real things. Not things to just pass the time while I wait. I want a baby, can't. I'd like to live on my own, can't. I'd like to go for a gosh darn hike, CAN'T! All my friends are doing stuff and moving forward.... I'm still sitting here.

AHHHHHHHHH!!!! I'm just frustrated. Mostly with myself. Wish I just felt... better. Until then I'll just keep waiting... what else can I do?

Breathe Easy

Thursday, October 6, 2011

Uppin' the Oxygen

Hello World!

Everytime I tell people I'm feeling better than I have in a while, BAM disaster strikes! I just had clinic Monday, it went well - Lungs are stable, weight is good. No problems. Tuesday - Uneventful, slept a lot. Wednesday I had a transplant check-up. Again Lungs good and weight good. Thursday BAM! Everything came to a crashing halt while I was out at a store!

I went out to do a little shopping. Grabbed a snack at Burger King and headed to Kmart. I was just looking to buy some plastic totes for my 'Gutting the Basement' project. Inside I found a pair of everyday boots. Yay! O and no totes. Anywho, as I was checking out and leaving my chest started to feel really tight and it was hard to breathe. I had my O2 on, 3L but still felt like I couldn't catch my breathe. Well now I start to panic a little because well that just me. I'm a panicer. I get to my car, which is parked fairly close thanks to my handicap pass (life saver!) and struggle a little to get the key in, finally open the door, frantically find my inhaler because I stupid didn't have in ON me, just WITH me. Then the most embarrassing part.... I peed myself. Right there in the parking lot. I just lost bladder control - apparently its common when your O2 drops, which is good to know. I climbed in my car, coughing and struggling and still peeing - hoping no one saw anything! Out loud told myself to relax and took some real deep breaths.

I took out my Oximeter and checked my levels, O2 was mid 80s and Heart rate was over 150. WOOOO! I immediately call my doctor and chat it up with them and find out what I need to do. Everything calmed down while I was on the phone. The plan was to up the oxygen and take it easy! If it happened again I was to call 911. Are you kidding, 911??? I scare easy and that shizz is scary. The very next call was of course to my Mom. My Mom is my 911.

So I sat in the parking lot for like 20 minutes and just collected myself then went home. SO my simple trip to Kmart ended up being quite the... adventure? Sheesh. Nothing can just be simple.

Breathe Easy

Monday, October 3, 2011

C and M's Wedding

Hello World!

My Best Friend got Married!!!!!!!!!! AHHHH!!!!!!!!!!! She is such a grown up now! It was amazing. So much fun. So beautiful. Even though the weather wasn't ideal, it was awesome. She was such a beautiful bride. And her husband was so handsome. They make a beautiful couple. So happy for them. Right now they are on their honeymoon in Hawaii! I'm a little jealous. I want to go to Hawaii sometime. I wish them nothing but the best! Time to start makin' babies!!! Hahaha. Here are a few pictures....
The Ceremony.

Me and 2 of my besties.

 Their First Dance as Mr. and Mrs!!!
The beautiful couple!!!

Their car!!!! :)

The Bridal Party, I'm the tiny one in pink on the end!

Again Beautiful wedding. Bring on the babiesss!!

Breathe Easy

Wednesday, September 28, 2011

My Brother's Wedding

Hello World!

So my brother got married on Sunday!!!!! It was amazing. So much fun. So many laughs. All around great time. There was one snag, my now sister-in-law's mother is a SUPER BITCH!!! She made my mom cry, and not in the good way!

My mother wanted to wish Annalie good luck and just see how she was doing right before the ceremony. But this woman shoved my mother out of the room and slammed the door behind her! I used all my power to restrain myself from doing something. How disrespectful?! This woman acts like a child all the time and this isn't the first time we have had problems with her. She is disgusting, self-center, disrespectful, and just an all around bitch. We, the family, will have NOTHING to do with her ever again. When my brother starts making babies, baby showers and birthdays will be separate. We, the family, don't associate ourselves with such trash! She is a horrible human being. I have no good things to say about her.

Other than that incident the wedding was wonderful. We were dancing and laughing. I was able to last the whole thing without my pesky O2 tank! I did have it with me in case I needed it but it is uuuggggly! So I was glad I didn't have to wear it.  The cake was delicious! I ate my piece and then stole my Aunt's while she was away from her seat! Haha. We all had such a great time! Here are a few pictures other people took. Most of the pics won't be ready for another week or so, but I'll post them when they come in! Until then enjoy these....

Annalie and Jason! The happy couple!

Ryan and Ashlie, my younger bro and Annalie's sister

Me and my Mama!

The Family gettin' funky!

One wedding down, one more this weekend!!!

Breathe Easy

Tuesday, September 20, 2011

Quarter Stone

Hello World!

So my last post was full of complaints. This one won't  be like that. Well not completely full of complaints. Who wants to read about all my problems? I sure don't!

Well I get out of the hospital tomorrow! YES! I'll have to do IVs at home but it is better than being in here and missing my brothers wedding! I'm super excited for him! It is this Sunday, Sept. 25th! Then next weekend, Saturday Oct. 1st is one of my best friends! It is going to be a good week!!!

So I was in the hospital for the past week. It has been interesting. My nutrition has been a roller coaster the passed few months. SO I hope this stay added the extra weight and I get to keep it on my body. Also this visit a pretty large (the size of a quarter!) kidney stone was found... AWESOME! Its too big to pass, and from what I hear passing Kidney Stones is painful! But that means I'll need minor surgery for them to go into my kidney and break up the stone and extract it. Should be a minor surgery but with lung problems anything with anesthesia is more complicated than usual. Still not sure exactly when that will take place. Right now the stone is just hanging out not causing any real problems.

While I was in house I missed my Great Strides Walk for the Cystic Fibrosis Foundation. I organized a team and collected donations and then couldn't even walk. I was pretty disappointed in myself but what can you do. My friends and family still went to the walk and represented our team. My friend made a shirt to wear at the walk and put several CFer's names on it. She asked me if I wanted to add anyone. I have met SOOO many CFers on Twitter and Facebook, there is no way I could fit you all. So I choose just 3, next year I'm going to try and fit more. But I choose Connor Jones, his story breaks my heart. CF steals lives all the time but Connor's mother blogs and her blog just melted my heart. She stares hardship in the face and never backs down. I admire her strength and courage to continue each day. I also choose Callie Simons, who I met just this year. She passed away in May very unexpectedly and I can relate. I went down the same path in 2009. I thankfully made a turn around and still here today. She sadly did not. I think of her often. The third one I choose was Jackson Wynn! He is so cute and I talk to his mom a lot on twitter. She is an amazing Mother, as most CF parents are. But J had some struggles and his cute little face just makes me smile when I read her blog and see his pictures. Next year it will be awesome! We will keep walking until theres a cure!
Team: Breathe Easy!
Our team didn't just walk for me. We walked for several CFers.

September 20th = 16 months of waiting. Call me already BWH!

Breathe Easy

Monday, September 5, 2011

Burnt Out

Hello World!

This is exactly how I feel these days...

I am trying to live my life this summer. Live a life, not a CF life. I was doing pretty well for a few months, lung wise. Well as "good" as you can be on 23% lung capacity. But my weight took a serious dive. I was just doing so much that my body couldn't keep up. I went from 98lbs mid May to 85lbs 2nd weekend in August. Not good, not good at all. So off to the hospital I went. Not so much for my lungs, they were staying stable, but for "failure to thrive."

The transplant program has a strict policy about maintaining a 17% BMI or higher. That is about 88lbs for me. So once I dropped below that % I get "deactivated" on the list until my weight goes back up. Talk about a shot in the face. So I ate and ate and ate and threw up and ate and ate and threw up some more. I got my weight back up to 98lbs in 2 weeks! Back on the "active" list I went. I was very glad to be back on the list.

But I feel I'm in the same damn boat again! I won't to do things, not sit around and just wait for lungs to show up. Just waiting, that's not living life. I'm not even asking to do a lot. I just wish I could go out with friends for a weekend and not need a week to recover from it. Or be able to walk my dog around the neighborhood and not be exhausted for the rest of the day. Or walk up a flight of stairs and not need to sit at the top, cough my brains and sometimes lunch out. Or that I could eat a meal and the calories in it just STAY ON MY BODY! Is it too much to ask for some kind of normalcy??

Don't get me wrong, I do love my life and wouldn't trade it in, ever. But sometimes I just wish I wasn't being "tested" all the time. I know, I know, the hard parts of life make you stronger and I do believe that. But I'm tired of being "strong." I wasn't raised to have a pity party for myself. So that's not me. I love my family and they are very supportive. Sometimes their support feels like nagging and drives me bananas. I know they want the best for me, I know they want me to be successful. I feel like I'm giving 100% and they are only seeing 50. It just doesn't seem fair sometimes. And yes, I know, life's not fair.

I'm dreading the colder weather and winter all together. Last winter was pretty hard, lots of hospital stays. And I think this winter is going to be just as bad if not worse. I try not to let my cystic fibrosis bug me. And it usually doesn't. But lately it just feels like I can't win. If I keep going down this road I'll either be in the hospital ALL the time or stuck in my house ALL the time.

I need to find the energy somewhere to keep doing what I'm doing. But it is getting hard. I'm burnt.

Breathe Easy

Wednesday, August 17, 2011

It Happens

Hello World!

I know, I know, I've been slacking. I just haven't really had the motivation to blog. There have been some things going on. It happens. But I'm feeling myself again these days.

I went to my besties Bridal Shower. It was a traditional Tea Party. It was fun, fancy! Haha. I had a good time. I'm pretty sure my bestie had a good time too. Her wedding is coming up quick. I'm very happy for her.

I did wind up in the hospital again. This time mainly for a weight issue. I was doing too much and not eating enough to keep up with all the activities I had planned in July. So my weight crashed. My lung functions stayed fairly stable. They dipped a little but for the most part I felt great - lung wise - the entire month of July. But I'm on day 9 in the hospital and my weight is getting back up there and the IV antibiotics are working well. I get to get out of here Friday. Very happy about that.

I plan on laying low in the activities department. I need to keep myself in good condition because I want to be able to walk down the aisle at both weddings O2 free. The O2 backpack is just not attractive. And it doesn't match either dress, haha.

I get a lot of support from my Family and Friends, I also get a lot of support from my twitter friends. Many of them have "problems" and "issues" of their own. So I appreciate it when they take the time to talk to me and wish me good fortune. One of my Twitter friends @JosiesJewels, has some medical stuff of her own going on but always takes time to say hello, and wish me good thoughts. She makes jewelery and I just thought I would give her a little shoutie. You should definitely check out her blog:

Breathe Easy

Monday, August 1, 2011

Not Cool

Hello World!

Well thanks CF, you listened to me perfectly! What the F did I do to you? Making me super sick a week before my Bestie's Bridal Shower. Not cool. Not cool at all! Now I'm destined for the hospital. My doctor would of prefered I went in today but I negotiated an extra week. So assuming I don't have any fevers this week, I should be able to keep my freedom for another week. Stupid CF, you ruin everything.

I want my transplant call now. I'm sick of this junk.

Breathe Easy

Wednesday, July 27, 2011


Hello World!

My July has been crazy busy! I love it, don't get me wrong. I haven't had this many things planned in a long time. I feel like a real person with a life again. Its nice. A little chaotic sometimes but nice.

My health is stable at the moment. I couldn't ask for more! I made it an entire month with dropping any lung function! I actually went up 1% haha. Thats awesome for me. I usually do a roller coaster type deal, down one month, up the next, then back down. I finally managed to hit a straightaway. I'm hoping to stay on this ride! Since starting my increased tube feeds I do think I've gained weight, although I've been to nervous to actual step on a scale. But I feel fatter, haha. I think the increased  feedings is some how stimulating my appetite even though my stomach is pretty full with these feedings. But I find myself craving some foods again. I LOVE IT!!! I actually ate some chips, almost a whole bag today! So I can't complain about my health, right now its doing good! Well, decent, haha cause lets face it 90lbs and 25% lung function isn't really GOOD. Haha, but stable and I will take that!

In other Jessi news I am a total pro at driving the boat!! I finally got the hang of driving and a friend showed me how to pull people on a tube and water skis. Its awesome. I will say my docking is still terrible but whatevs! I can drive a car but I can't parallel park. Who needs it! Haha. I went swimming... kind of.... for the first time in, maybe 4, years. It was exhilarating! Although I did manage to work myself into a coughing fit which lead to puking while in the water. That was super cute in front of my friends, haha. O CF thank you for always giving me a story to tell.

Right now I'm planning a couple Bridal Showers. One for one of my Best Friends and One for my future Sister-in-Law. The showers fall back-to-back. One this coming weekend and one next. My brain is going to explode with all this wedding and bridal stuff. And I'm not even getting married, haha. But I'm very excited and happy for both! The Showers will be amazing! I need my good health to last until at least October 2nd. I need/want to get through both these weddings feeling good. I'm hoping I feel well enough to walk down both aisles, I'm a bridesmaid in both, O2 free. Cause lets face facts, an ugly red backpack carry O2 and tubing are NOT cute in a nice dress and heels. So CF please... help me out this one time, be nice for the next few months. I would really appreciate it!

Breathe Easy

Tuesday, July 19, 2011

Simple Things

Hello World!

I'm super annoyed and frustrated.... with myself. I hate that I can't do simple things anymore. Walking from the couch to the fridge requires a coughing meltdown once I reach the fridge. There better be someone around if I want to get anything out of a jar. It would be nice to go up a flight of stairs and not feel like I just ran a marathon. Showers now take me close to 45 mins.... and thats not including the getting dried off and dressed after. I would love to be able to go to the store and shop in the adult section, I mean I am 25 not 12. Anything over 5lbs is too heavy for me. For one day I would just like to have a normal poop! Eating use to be fun, I would love to go out for a meal, now I eat because I have to.

I had my CF Clinic yesterday. My lungs are the same as they were a month ago, which is great! But I'm losing too much weight. It doesn't seem to matter what I eat it doesn't stick to my bones! The new plan is to increase Tube Feeds. I thought it was going to be 24 hours a day but it is actually 18, so I get 6 hours of freedom! Yayy!!

I miss my simple life. And believe it or not I once did have a simple CF life.

Breathe Easy

Friday, July 15, 2011

Quick Note

Hello World!

Just a quick note. I just wanted to say keep fighting to all my Cystic Fibrosis peeps! Last month it seemed like we lost quite a few to this awful disease. But this month I have heard several stories of successful transplants and just the will to keep going!

Its hard to explain how I feel when I hear both the good and bad stories about CF. I don't actually KNOW any of these people outside the Internet world. But I get so excited and hopeful when I hear about a successful transplant or that someone just kicked a staph or pseudo infection. Its like CF is this giant monster and these successes are slowly knocking the CF giant off its feet! CFs health meter is going down!!!

And when I hear of the sad sides of CF my heart breaks for their family and friends. I feel like I know these people even though I don't. I don't like when the CF giant starts to get some power back by stealing peoples lives. I understand the fight everyone with CF goes through. I also understand what its like to have a loved one with CF, my brother also has it. But I am fortunate enough to never have lost someone really close to me. So I can't imagine whats that like.

I'm hopeful for a cure in my lifetime. I'll keep fighting, not only for myself,  but for those who are no longer here to fight.

Breathe Easy

Tuesday, July 12, 2011

Roller Coaster

Hello World!

Last week was a bit of a roller coaster. But definitely ended on a super high note! The 4th was an adventure, haha. I just laugh thinking about it. The whole family was at the Lake house for the holiday and we decided to pile into the boat and go across the lake for dinner. While we were in the boat we hit a freak rain storm, it was short but pretty much drenched us! It was a cold rain too! We scrambled to put a canvas up to block some of the rain, it became "keep Jessi dry, shes holding all the clothes" haha. Because it was raining in that area we skipped that gas station. We figured we could make it to the next one. So on we went, out of the rain and the sun came back out. It was lovely. We turn towards the gas station, we are about 5 boating minutes away, and we just stop. Out of Gas. So we floated and called the boat tow people and they said it would be a little while. So we drifted towards this dock with people on it and yelled to them. They were super nice and gave us a tow to the gas station. By this time everyone is hungry and really sick of this disastrous ride, haha. So we just dock near by and eat. It was a very eventful boat ride.

Tuesday and Wednesday were uneventful. Thursday however I met my mom for lunch in the next town over. We ate lunch at this little local diner. The food was... alright, not great. So we decided to walk down to the docks and get ice cream. While we were walking and talking my mom rolled her ankle in a hole in the sidewalk and fell and hit her face on the ground. I had a mini heart attack because I thought she had a concussion. She was stressful. I don't deal well with emergencies, I've actually never really had to deal with emergencies, so its more of I don't have the experience. But she is ok. Shes all bruised up and her ankle hurt for a few days, but she is doing much better.

When she first fell.....

What she looks like now!

Friday was basic, nothing exciting. As for the weekend, I went down to CT to visit one of my Besties, Chelsea. It was such a good weekend. We got down there and sat by the pool and then Chels and her boy toy made us dinner. It was good too! They did a good job. They we played some card games, they drank Sangria, I splurged for Rootbeer! We ended the night watching the Justin Bieber movie... haha... its a good movie! The next day we went out to breakfast, Delish! Then sat by the pool and did some swimming. It was so relaxing and beautiful! A really great weekend.

On the health front, I'm still struggling with weight. Not sure exactly what my weight is, I've been too nervous to step on the scale. I've been contemplating moving to a mostly Tube Feed diet and then having food be 'bonus' calories. But I'm not sure. I have to talk to my doctor about it. I'm not sure how nutritious that really is, but eating is like a chore. Nothing ever sounds appetizing anymore. I use to love going out to eat but now when I go I never know what I want and I never eat very much. So I don't know what I'm going to do. I go to clinic next Monday so I'll just have to see what they say.

Breathe Easy

Friday, July 1, 2011

Sick of being sick

Hello World!

Been a weird week. I had two extra dogs with me all week. My mom was gone on vacation for the week so I kept her little guys with me. Max adjusted fine. Ruby had a little bit of difficulty. She was confused and restless the first night but eventually settled in. Tucker was a little confused with having them around all week as well. Usually its just me and Tuck. They get along just fine so it was really no big deal.

I started doing a fundraiser for the Cystic Fibrosis Foundation. I'm selling travel coffee mugs. The mug gets you free coffee from Dunkin Donuts every Sunday for the rest of the year. I had to commit to atleast selling 20 and I've been at it 1 day and I already sold 10!! Whoop Whoop!!

My Lungs really hated me last night. They kept me up alllllll night. I think I got, maybe 3 hours of sleep. It was awful. Just coughing and coughing and coughing. All that coughing really disturbed my lungs and up come some blood in the morning. My lungs are incredibly irritated right now. Not really sure why. Its not a congested, moving crap, type cough. Its like a dry, annoying, never ending, cough. Hopefully it stops. Otherwise I'm going to have to call the doctors. I know the moment I say anything to them they are going to say "HOSPITAL!" I'm too busy this July to go into the hospital. I have things planned all month long. CF is really putting a crimp in my life this month and I'm going to be pretty pissed if I end up in that Jail Cell this month!

To top all the Lung crap off, I'm down another 2 pounds. Its ridiculous. I don't understand why I just can't keep any weight on my bones! Its really discouraging when I'm trying, what seems like everything, and nothing happens. I wish CF would just give me some kind of friggin' break! I'm so sick of being sick!

Breathe Easy

Saturday, June 25, 2011

Had Some Movement!

Hello World!

Well its been a while since I've posted. Had a couple of crazy days that seemed to blur all into one. Then felt like crap for a few. Its been a roller coaster week. Monday was clinic day. That was the last post I did. Tuesday was a busy one for me.

First I stopped by the dress shop to pick up my Bridesmaids dress for my friend Chelsea's Wedding! Then a group of us used inflated rafts and floated down the river. It was great! We just floated along and stopped to swim and eat lunch. It was lots of fun. I hadn't been IN water like that in maybe, two, summers. So it felt great to wade in the water and not be freezing cold! I did bring my O2 with me, although I didn't wear. Bad tan lines, haha.
After the river float I had dinner with my brother's fiance's family... if that makes sense. It was Her, Mother and Grandmother and Sister and My Mom at dinner. We were planning Annalie's, my brother's fiance, bridal shower. It was interesting. Our families are very different haha. But we worked it out and I think it will be a great Bridal Shower. I was put in charge of games!! SWWEEETTT!

After dinner I was informed my older brother was in a motorcycle accident. WHAT! He doesn't even own a bike?! Well my uncle let him ride his. Nice job Uncle, haha. My brother was too stupid to wear a helmet so of course ended up with a head injury and had to be taken to the hospital. He is ok, and was released the same day. He is just banged up with road rash and stitches. Idiot!

So Tuesday was a long day! And because it was so long I decided to crash at a different house than the one that had my O2 Concentrator. So I had to use my portable O2 which is just pulse and not continuous. I had an awful night sleep. Woke up like every 2 hours. And had a headache in the morning. I spent all day Wednesday with my Grandma. That was fun. I hadn't seen her a while.

O and while I was waiting to meet my friend to pick up my dress I decided to let Tucker out of the car. It was his first City experience. He has never been to a busy city with lots of people and cars. He did really well. Sat close to me but didn't freak out. He is doing so well with his fear and stranger phobia. I'm a proud Mama!!

Tuesday and Wednesday were so busy they basically blurred into one long day. Thursday I slept pretty much all day, I was exhausted. Friday I was finally starting to feel better. I HAD MOVEMENT!!! I was finally able to poop. Like really poop, not just a little. The blockage is gone! THANK GOD! I've been drinking tons of Gatorade to stay hydrated. I don't want another blockage. My weekend is mellow. Just hanging out with the family at the Lake house. My Mom leaves for a week vacation on Monday. Not sure what I'm going to do with myself. I talk to her everyday! It'll be weird with her gone for a week. Hopefully Transplant doesn't call while she is away. I might freak out. She is the rock in the family. We would all crumble without her.

Breathe Easy

Monday, June 20, 2011

Digestion Hell

Hello World!

Well I have been in digestion hell this past week. Not enough coming out, so in turn not much can go in. Ive been having tummy troubles all week. Going to the bathroom is a bit of a task. Although I've never actually given birth, I felt like it this week on many occasions. I had cramping like crazy on one side of my abdomen. Its still there a little bit but not as bad as it was. Since nothing is really leaving my body, well not a lot has gone down, and stayed there! I'm still hungry... starving even! But about an hour or so after I eat, I tend to just puke it back up. Not keeping many calories down that way. No Calories = No Weight = DEATH SENTENCE (to be dramatic)!!!

I had clinic today. Lung functions same as 2 weeks ago which was good. Weight.... 90.5lbs. THERE IS NOTHING LEFT OF ME!! I'm like skin and bones, its gross. I have to have a certain BMI in order to stay on the transplant list. I'm half a pound away from being "deactivated" until I gain more weight. HOLY CRAP! My doctor told me the crampyness is due to a blockage! BLOCKAGE, greeeaaatt!!!! They think the blockage is due to dehydration. Very possible as I hate water and love to sit in the heat.

Solution: MIRALAX! And lots of it. Also 32oz of Gatorade a day, to replenish. If the Miralax doesn't work we move on to GoLytely... that stuff makes you go! Haha, so hopefully I won't need that. If both of those still don't work, surgery to "unblock" me. YIKES! I don't want any surgery. Anesthesia makes me really nervous. I don't like being "knocked out." And I heard it can be dangerous for patients with respiratory problems. I don't need anymore 'danger' in my life. I'm pretty tapped out.

So hopefully I gain back the 8lbs I have lost in a week and a half. I can't be this small. Its just not healthy.

Breathe Easy

Monday, June 13, 2011

What the F!

Hello World!

Hope everyone had a great weekend! Mine was rainy and cold!! My cousin had his engagement party this past Saturday. Well... if I wasn't related to the kid I would of left! First of all it rained. Not a little sprinkle but rain. Cold, windy, rain! I went early with my mother to help set up.... why? We got there around 9am, party didn't even start until 1. Went had to set up tables, tents, tarps, get the food out.... ALL IN THE RAIN! We weren't allowed to use the house. Only the tiny screened in porch. What the F, dude. So before the party even started my feet and shoes, soaked, my O2 bag, soaked, sweatshirt and 2 shirts underneath.... SOAKED! OMG was I miserable. Finally the woman who's house we were at said we could use the kitchen. A small sanctuary from the rain. I actually sat in my car with the heat on to dry my socks and warm up for a little while.

Once the party started.... I quickly realized everyone except my mom, 2 brothers, and grandparents smoke. GREEEAAATTT. Not one of them cared I had oxygen on. They would light up right next to me. And what was I to say, we were outdoors. I felt like it was a lost cause to say anything so I would just walk away. I ended up staying until about 6pm.... I couldn't bear to stay another minute. I would of left a long time ago but I didn't want to be rude to my cousin.

So Sunday then turn was crummy. My back and arms were sore from lifting and moving things. I was still cold to the core of my body. And my lungs pretty much hate me... they still hate today! I'm hoping we start getting along again because I have another clinic appointment Monday that I need to be good.

Today the sun peaked out for a few hours so I soaked up as much as I could. I still feel a little sluggish but I think that will clear up in a few days. No more full days in the rain for me! Done with that shizzzz!

Breathe Easy

Friday, June 10, 2011

Not Bad

Hello World!

Well my clinic on Monday went pretty much how I thought it would. My weight was down a little bit and my Lung Function tests were down. It was decided that I get 2 weeks to bump things up. So I have to go back June 20th. If things still don't look good it will be IV and hospital time again. I'm really hoping that doesn't happen. IVs really put a damper on summer activities. I become super sensitive to the sun, the IV times are always crazy, and the worst part is being accessed! I can't shower OR go swimming!!! LAAAMME!

The rest of my week was good. I went out to dinner Wednesday night with my Mom. Always a good time. We did some window shopping. We also went and picked up my Bridesmaid dress for my brother's wedding! The color is great! I really like it. I fit of the dress though.... not quite what we had expected. I'm so small that the dress is obviously big on me. So hopefully after alterations it will look stunning! I have faith it will.

This weekend will be busy. I have an engagement party to go to for my Cousin. Me and my mom are going early to help set things up. It will be a long day! I hoping we get some good weather. Not too hot and not rainy! But it should be fun!

Breathe Easy

Sunday, June 5, 2011

Havoc for My Body

Hello World!

I hope everyone had a great week and weekend. Mine had some ups and downs. Some ups: I took my first exam for my program and got a 93! I should of got a 100 but I read a question to fast and made a silly mistake. I was over confident. But 93 is good too! The weather was a little crazy one day but over in my favor all week which was lovely. Because of the nice weather I'm getting a nice summer tan! Always better than being pale! One of my best friends came up and visited me Friday which was great. I hadn't seen her in a while, so it was nice to just chitchat and catch up.

Some downs: I was carless all week! Both my parents have to have the cars inspected in May, so they needed to borrow mine while theirs was getting fixed. I was glad to let them use it. no biggy, but it left me carless! Haha. Good thing Transplant didn't call! Another down is a biggy.

For almost 2 years I was so thin and sick that I didn't get my period. My body just wasn't healthy enough to menstruate. Well it finally made a return in December. Its not regular, but hey its a start! It means I'm getting better! :) But the sucky part is, is creates havoc for my body.

I only have my period for a few days (may be an over share, but whatevs! it happens!). For a week before it come my chest becomes really tight and congested, I lose any appetite I have and just become overall really tired. It has cause me to be hospitalized for IVs 3 times because of the pre-period crap my body goes through.

Well this week was no different. I was doing great, three GOOD meals a day, getting up and out more. I was really feeling good. Then one morning I slept about an hour longer than I had been and wasn't really hungry that day. I didn't think much of, one day, whatever. But I slept even later the next and didn't really eat that day. I knew it was coming. Next thing, I'm coughing myself awake for 3 nights now! I'm very tired and not hungry at all! Every girl hates their period but mine is killing me!!!

I have clinic tomorrow. I know its not going to be great. I'm just hoping they don't mention the big "H!"

Breathe Easy

Wednesday, June 1, 2011

Memorial Day

Hello World!

How was everyone's Memorial Day weekend?? Mine was wonderful. It was spent with friends and family. Can't beat that. Here are some pictures of my dogs and a few twitter friends dogs in the Memorial Day best...

1 week old French Poodle Puppy! No name yet.

Lucy (top), Tucker, Ruby, Max, and Shotti... My babies!

I have also recently enrolled in a program to become a Certified Dog Trainer/Instructor! I am so excited. I have finally figured out what I'm passionate about, dogs. Once I'm certified I'll be able to work some place training dogs and maybe even start my own buisness. The overall dream is to open my own facility with dog training, doggy daycare and boarding! I may even learn how to properly groom dogs. Not sure about that yet. I have heard it is pretty physical. So we will see. But right now I'm just excited to be headed down a road that will be there post transplant!

Breathe Easy

Thursday, May 26, 2011

Our Garden

Hello World!

As I have mentioned before in 2009 I was in the ICU on a ventilator for almost month. Everyone deals with stress in different ways. My Dad deals with it by keeping busy. He has to have something to do. While I was very sick he started planting a garden. The garden was originally going to be mine but I got sick before I could do anything with it. So he started planting. Now the garden is a project we work on together. This year we have many things blooming! I'm not good with the names of plants I just go for what they look like. I also love color! Here are some our flowers that have bloomed...

Breathe Easy

Monday, May 23, 2011

Naner, Naner, Naner!

Hello World!

SOOO its been kind of a busy few days/weeks. I love being busy but MAN its exhausting! Haha. My family opened up our Lake House on May 15th... This past weekend I officially moved my stuff in and made myself comfortable in my summer crash pad. I LOVE the lake. Our house is on Lake Winnipesaukee. It is my favorite place in America.... I specify America because Aruba is probably my favorite place on the planet.
Alton Bay, NH - Sunset

Because I don't work or have school I get to stay at  the Lake House all the time. My parents and brother only come up on the weekends usually because they have to work during the week... Naner Naner Naner!!This summer I'll be taking Lucy up with me as well as Tucker. Tucker came up and stayed with me last summer. I love my pack of poochies but it was nice just me and Tucker during the week and then the rest of the pack came up on the weekends. It'll be fun!

We had our first small get together this weekend. We had lobsters, steamers, and steak! YUMMYY! It was so good. And I'm glad I have my appetite back because I ate about a pound of steamers then 1.25lb lobster and then a piece of steak, some beans, cottage cheese, and corn!! WOOOOO!! I finished it all off with a brownie and piece of peanut butter pie! God, I love having an appetite. We had this delicious lunch/dinner for my Grandma's birthday! She turned 83 on May 16. And she is going strong. The rate she is going she may out live me! Haha. I love her, she is awesome.

As for medical 'news,' haha, my 1 year check-up appointment with the Transplant team went well. I had to update some tests and just have a check-up. I have to have another check-up in 4 months. HOPEFULLY by then I'll have my new lungs and won't need that appointment. That would be stellar! I have a couple more days of IVs to finish up at home. Then I can be deaccessed!! YAYYYY!!! I'm hoping this hospital stay will be the only one this summer and I can make it until the fall before I need another. I would like to be able to enjoy the next few months and not be sick. So please, please, please, CF God let me stay in good condition!

Breathe Easy

Monday, May 16, 2011

Quick Update

Hello World!

Stuck in the hospital still. This visit we, being me and my doctor, decided to try some new medications. Well the first couple of days weren't good.  I had some weird side effects to 2 of the medications, Colistin and Doripenum. I was feeling just weird, and off balance. Its hard to explain. But I didn't enjoy the weirdness. So the dosage had to be changed. Thankfully they figured it out and all systems are go! I ad PFTs today, Pulmonary Function Test, they were good. I'm up in percentage and my weight is up as well! Overall heading in the right direction. On Friday I have a check-up with my transplant team.

Breathe Easy

Tuesday, May 10, 2011

Love Ya Ma!

Hello World!

What great weather we have had the last few days! Just wonderful. I even got a little  color on my shoulders, how exciting! Haha. Last week went well, no big news or stories to tell. Although I am back in the stinky hospital. BOOOO! Hopefully it'll be a quick visit. I went to a family BBQ Sunday for Mother's Day. It was nice. Some rain kept us inside most of it, but overall a good BBQ.

As mentioned Sunday was Mother's Day. I would just like to say HAPPY MOTHER'S DAY to my mom and all teh other moms out there. My mom is the rock in our family. Both my brother and muself have Cystic Fibrosis that she has to deal with. But on top of that in June 2009, my Dad was diagnosed with a stage 4 terminal Cancer. She has to deal with TONS of medical issues. She is never seems to crack and always stays positive. She refuses to let these set back get her down, and powers through it everyday. She is able to walk through life with such grace. I can't wait to be in a position to give back and be able to help her in a way that she has elped me. She is an AMAZING lady!! Woot, Woot! Love ya Mama!
Older Bro, Jay and Mom

Me and Mama
Little Bro, Ryan and Mom

Breathe Easy

Tuesday, May 3, 2011

Holy Hook-Up Batman!

Hello World!

I had my monthly CF clinic yesterday. Didn't go great. I figured as much though. For the past week or so I've needed more oxygen and I've been more tired than usual. The extra O2 helps combat the fatigue but its annoying. I hate have no energy to do things. I miss the days I could just spring up from bed in the morning and go go go. Now when I wake up, I have to lay there for 5-10mins, then sit up for 5-10mins, THEN I can get out of bed and move around my room. But I still need to take my time because, my room is located downstairs, so after getting up my first task is a flight of stairs. HOLY MOLY! Hhaha. Its good for me, just tiring. I tend to have a coughing freakout when I get to the top of the stairs. Its ridiculous, I use to be able to run up the stairs, now I can barely walk. So Lame! I coughed up some blood the past 2 days as well. Thats always a great sign, haha. Thankfully it seems to have stopped. My PFTs were down about 8% which isn't good at all, but I actually expected it. My weight was stable which is GREAT! I mean gaining weight would be phenomenal but the fact that I didn't lose any in a month is fantastic news!!

So the game plan is a hospital visit for a clean out. I'll be going in next Monday, the 9th. I have 5 'bugs' in me right now. 3 staph, with MRSA, and 2 pseudos. My pseudos are resistant to EVERYTHING! I love to harbor the worst of the worst, haha. My doc said he is going to try a new med with me, something like, Doripenum? Anyone had that before? He said it has to be dripped in over 4 HOURS 3X A DAY! Holy Hook-up Batman! I guess I'll be getting real cozy with my pole haha. Hopefully it works and kicks some CF-Buggy-Butt! I would like to be hospital free this summer so I can actually enjoy my summer!

I don't have any complaints outside the typical CF whining. I have a family BBQ this sunday to attend. It should be fun. Sunday is also Mother's Day! Not sure what I'm doing for my Mama yet but I'll think of something. May 2nd was my Dads birthday! Happy Birthday Pop! In Tucker news, I brought out his little pool last week. Tuck thought he was in heaven. He just LOVES water! Maxi is also a little swimmer. Ruby and Shotti want NOTHING to do with water and swimming. Lucy isn't sure yet. She has never experienced anything like a "pool" before. It'll be exciting to see if she is a swimmer at the Lake! And we get to move up to the Lake May 15th!! Wooooo!!! I can't wait. BOAT TIME!

**R.I.P. Callie**

Breathe Easy

Thursday, April 28, 2011


Hello World!

Last night I got a chance to go to a lecture, or story telling actually by Matthew Gray Gubler. MGG is on the show, Criminal Minds. He plays Dr. Spencer Reid. I almost didn't go because I had no one to go with and I'm not really good at going to event on my own. But I thought about it, and I really wanted to go, so off I went! I am soooo glad I did. It was so great! MGG was super nice, quirky, funny, and it was so mellow and casual. He was open to anything. He allowed pictures to be taken throughout the entire evening. MGG is a great story teller. If I got a chance I would definetly see him again!

The venue, UNH Durham, was awful though! The campus is not handicap accessible at all! I wish I had known that ahead of time. Good thing I was wearing oxygen!! The building of the event sat ontop of a huge hill. I had to climb 4 sets of about 10 stairs just to get to the doorway of the building! And the trek up all those stairs occured AFTER I had to stand in line for an hour, with no place to sit. So once the line started to move I had to try and keep pace with "healthy" people... HOLY STAIRS BATMAN! I thought I was going to diiieee!!! Once I finally got to the building, up another 2 flights of stairs I had to go. There was NO elevator. JUST PLAIN AWFUL!!!

The part that bugged me the most was not 1 person asked if I was ok or needed help. Most people just stared at me. I felt like a freak!! I've never been stared at so much in one place, it was like no one there had EVER seen a person wearing oxygen. It was super awkward and uncomfortable. My mom said a lot of it was probably in my head and not that bad, which is possible. But, sheesh, its not polite to stare!

So overall the event itself was GREAT but I'll never go back to that campus, ugh!!

Here are some pictures, I forgot my camera on the counter (oopsy!) so these were taken with my phone...

Breathe Easy