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Sunday, November 27, 2016

Thanksgiving 2016

Hello World!

Happy Thanksgiving everyone!! I hope everyone got to spend time with loved ones whether it be in person or via technology.

I'm so thankful for so many things. My family - as dysfunctional as we are, I would t want anyone else. My friends - we may not talk everyday or even once a week, but when we do catch up it's like no time has passed. Together we have been through so much and we always seem to gravitate back to one another. Friends are your family you get to pick. Thankful for the little things - a car, a job, a house, food in my belly - having access to the basics in life.

Thankful for my questionable health. While I may not be where I want, some days are hard - really hard lately, I'm thankful to still be here to complain about it. My donor - a thank you will never be enough. My donors family - for making that choice - you are just as important. I'm alive. And that will never be taken for granted.

And I'm oh so grateful for my husband. He is a one of kind man. He can drive me crazy and make me mad but at the end of the day I want him by my side. He doesn't always see the greatness in himself. He may not be "Mr. Romantic" with flowers and such. But he does all the little things - everyday - and that means more than 1 big gesture every now and then. When I'm with him I never have to pump  my own gas, open my own door, pull out my own chair, clean the snow off my car, or carry the heavy stuff. He surprises me with chips. There's always  root beer in the house. Weekend mornings have become breakfast in bed days. I get "Good Morning" texts every morning we are apart. He tells me everyday I'm beautiful- even when I'm on super steroids and pretty sure I look like a chipmunk or breaking out like crazy cause of my medications or have CF belly bloat cause well my insides never cooperate. He has this way of "not caring" about my CF while still caring. He just loves me for me. And one of my absolute favorite things about Brian is singing in the car with him. I hope the jam sessions never end!

For those who work on this holiday - Thank You! Your sacrifice with your family and friends does not go unnoticed. A big thank you to the nurses  who work on the holidays - As someone who has spent holidays in the hospital - it's nice to not feel alone. We all wish to be at home but you go out of your way to make us feel better while we are there.

As the weekend comes to end try and hold on to that Thankful Spirit. Remember what the holiday season is all about. Say I love you more, hug your family and friends, be grateful for what you have.

Breathe Easy

Monday, November 14, 2016

Day 6

Hello World!

On day 6 of being in the hospital. Although it feels like FOREVERRRR. This morning I finished my last round of Apheresis. Yayy! This afternoon or tomorrow morning I'll get my first dose of Rituxan. Rituxan is the chemo agent. The first infusion can take anywhere from 6-8 hours depending on how your body reacts to it. It has a whole bunch of fun possible side effects - as would be expected. So while I'm excited to almost be done with this, not really looking forward to this drug. Assuming I don't have any crazy reactions to it, I should be discharged tomorrow!

My biopsies from my bronch last week came back with the answers they all ready thought. So no news there. Over the course of my admission I've had potassium problems again and my kidney function is acting up. They believe these will stabilize once I'm done with all these new medications they are throwing at me. Overall things are moving in the right direction and looking good compared to a couple weeks ago.

Going forward, I've said it before but I'll say it again things will be different. A new regiment. I don't like to use the word "healthier" because that would imply I don't currently do anything right - which is not the case, I just need to do it better. Ask any patient of a chronic illness, you get lackadaisical over time. It's human nature. I need to go back to a stricter, tighter regiment like I had right after my transplant. Back to the basics. Re-instill some better habits, if you will. Because I surely do not want to be stuck out here again anytime soon!

Can't wait to get back home again!

Breathe Easy

Friday, November 11, 2016

Stuck in Cleveland

Hello World!

Well things weren't any better. I'm stuck in Cleveland for now. My lung function dropped another 10% since I was here just a few weeks ago. So over the course of a month or so I've lost 25% of my overall lung function. NOT GOOD! Big red flag.

Good news, we have a plan!

The plan is to do 3 rounds of Apheresis. I'll try and explain this the best way I can, Apheresis is a therapy that circulates all the blood in my body. Basically my body is making "bad plasma" that's causing rejection, and this machine filters out the "bad" and gives me back "good plasma." Once I'm done those 3 rounds of Apheresis, I'm going to be given a chemo agent (I don't remember the name of it) via an IV. Then for the next 6 months I'll need to see my local Dr and get this chemo IV once a month. Hopefully once all that is done this acute rejection will be gone. It's a long road, but what's life without a little struggle? After all said and done, best case scenario will be my lung function goes back up! But at least this should stop it from declining. If it keeps declining, it's back to the drawing board - and let's not g down that road yet.

Getting a round of Apheresis


The machine that filters my blood

So at the moment I'm sitting in a Cleveland Clinic hospital bed. The plan is to be discharged Tuesday or Wednesday next week - assuming everything goes as planned. So it feels like forever away. I miss Brian and my pups. I find hospital stays are "harder" these days - and I think it's cause I know I have Brian at home. I didn't have anyone else before to really "come home to." So it's bittersweet. I will say technology makes things better, I can still see his face every night with FaceTime - which helps.

Other than that, life is going just peachy! Hopefully I'll be back up and running like my usual self in no time.

Breathe Easy





Friday, November 4, 2016

Not Awesome

Hello World!

Well things aren't wonderful.

I'm a stubborn person. Have been my whole life. I'm opinionated and I know what I want. That can make me a difficult patient. Don't get me wrong I have an EXCELLENT relationship with my team of doctors. So great in fact I have personal cell phones I can call if I ever need anything. With that being said we've had our go arounds with what is "right" for me. Everyone is different.

A few weeks ago I went out to Cleveland for a transplant follow up. Things did not go the way I hoped. My lung function was way down. 15% from my baseline actually. Immediate red flag. My blood work also showed signs of new "bugs." These things called Donor Specific Antibodies (DSA) popped up. These are not good. It means my donated lungs are creating antibodies to fight my natural cells - basically rejection. SO I have to go back to Cleveland on the 9th of November for another lung function test, more blood work, chest x-ray, and a bronchoscope. During the bronch they will biopsy my lungs and be able to tell how serious the rejection is. Acute rejection is the "good" kind. Chronic rejection is harder to treat. But i won't really know anymore until then. In the mean time I'm on high dose prednisone, which is a steroid. Prednisone makes me hungry all the time, along with keeping me awake at night cause my brain wont shut off and makes me moody. I'm very grateful for Brian for dealing with me the last few weeks. Its been crazy.


On top of that stuff, the past few days have been rough. Ive been more short of breathe and extremely tired. So off to the doctors I went. Well thanks to the high dose prednisone my sugar levels have been sky high -  which we have decided is the root of this latest issues. They also made do a "walk test," which is where they hook you up the 02 monitor and make you walk around to see how your 02 levels do. We discovered doing this that my 02 level drop down when I'm exerting myself. SOOOOOOOOOO I been banished from working until I go see Cleveland and get this rejection under control.

Most people would love a letter from the doctor saying they can miss work for a little bit. But Ive already put in that time - years for that matter. I want to work. Don't get me wrong there are days i wake up and grumble about having to go to work BUT I'm glad I can get up and go work. It gives me some purpose in my day. So it drives me crazy that I'm not allowed to go to work. I HATE being told that. I'm all about proving you wrong. Don't put limits on my life. I'll break them every time.

So reluctantly I'll listen to the Drs and stay home for a few days and soak in my puppy therapy. But i cant wait to get back out to Cleveland and figure this mess out. I'm ready to feel good again and get this back on track. Tired of being sick and tired. I'll update again as soon as I know more.

Breathe Easy

Sunday, September 25, 2016

Update

Hello World!!

Well its been a while since I've been on here. Life gets crazy sometimes. I'm going to try and post more regularly... I know I know I've said that before. But really I will!

One of the biggest changes that has happened in my life is Brian and I bought a house!!! So exciting. I never thought in a million years I would own my own home. Its such a luxury in life. We are very proud and excited.

Personally, we celebrate 1 year of marriage back in August. That was awesome as well. We made it through year 1. It definitely had its bumps along the way but we stuck together and made it through.

Sometimes, even small things, can get so blown out of proportion and ruin things. Its important in marriage -  and life in general - to try and not let the little things tear you apart. You can disagree, thats normal. But at the end of the day we still said I love you - and meant it. Marriage is a lot of work. Its not for the faint of heart.

All 3 of the dogs are doing great! They are loving the new space they have to run. Kona and Hemi are gearing up to finally start agility. Its exciting. I think they are both going to love it!

As for news on the baby front - its still a work in progress. After visiting several doctors and specialist and hearing what their opinions were Brian and I decided there were a few things we needed to fix personally - together - before we bring children into this world. This past year we have grown a lot as a couple and set up some foundations in the family tree. There is a lot to consider and we aren't taking any chances.

Overall my health is doing well. I managed to escape last winter with no pneumonia. I'm hoping for the same thing!

Well a short, quick, to the point update for now. Since I don't have much to rant about health wise you just might start seeing my opinion on random things i feel are important to share.

Much Love world - We need it these days.

Breathe Easy

Thursday, November 19, 2015

Cleveland Checkup

Hello World!

I just got back from Cleveland a few days ago. I head out to Cleveland for a transplant check up every 3-4 months, unless I get sick, then I'll see them sooner. The last 3 times I've been out there my lung function has bee stable, in the 70s. Which is good, but I wish it was better. I once peaked at 96%.... my goal was always break 100. But with 3 bouts of pneumonia over the last 2 years I'm not sure if I'll ever get there. I still hold out hope but I know how lungs work, so we will see what happens.

My weight is good, stable. Its a little strange still to not worry about my weight when I go to appointments. I always used to dread stepping on the scale, and not for the reason most people had. I would try my best and eat so much food and sometimes I'd go to clinic and still lose weight. Its nice to have 1 less thing to worry about.

I got some better news on the baby front. I was glad I got to see my Transplant Doctor and not a fill in this time. He has had patients with CF and Transplant go through pregnancy and come out 100% healthy and the baby be 100% healthy. I respect the statistics but I rely on first hand experience more. I got some good information from him and more information to bring home to Brian. The discussion remains open and Brian and I talk often about what is right for us. There will probably never be a clear cut answer, but we will make the choice together.

Meanwhile, the rest of my days are going well. Nothing too exciting, mostly the same day in and day out. I did however celebrate my Mother's birthday over the weekend by going to a casino. Brian, myself and my brothers all went. She had a great time. And I know she loves spending time with just her kids. I managed to walk away from the casino up money. Which pretty much never happens. I usually lose or just barely break even. So it was nice to walk away with a win.

The holidays are coming up. Its crazy how fast this year has gone by. Definitely feels like a blur. But I'm grateful for everything that's happened this year. 2015 sure has been eventful.

Breathe Easy

Monday, November 2, 2015

Halloween

Hello World!

How was everyone's Halloween?? Mine was great! I made a short trip down to Rhode Island to visit an old college friend. It was so much fun! I was as Thor.... naturally with my blonde locks. Brian went as Captain America. It was a good time.

On the puppy front, Hemi and Kona have started dog class. This is Kona's 2nd go at class. I tried when she was really little but all the new dogs and new people were just too much for her little brain to handle. So now that she is almost 2, in March, I thought we could try again. Hemi is a natural, much more laid back than Kona. They are both doing great!

Other exciting news, I've joined the Northern New England Cystic Fibrosis Board! How awesome. I'm already an ambassador to the NNE Chapter and speak at a lot of events for them. Its exciting to think of the people I'll get to reach on this platform. I'm ready for this next chapter. 

Well I don't really have any other exciting stuff to tell you. I am headed to Cleveland for a transplant check up in a few weeks.We will be discussing babies then as well. 

Breathe Easy