Live Life then Give Life, Please be an Organ Donor.

Saturday, February 4, 2017

It's Official

Hello World!

Well it's official I am in Chronic Rejection.

So what does that mean... well.... the blunt answer, my donor lungs are failing. But there are still a lot of things up in the air.

I just had another appointment in Cleveland. My lung function was stable at 28%. While that's not really where I would like it to be, it's better than hearing it went down again. While out there I had an oximetry test done. It's a test where they see what your oxygen levels do while you are being active. This test showed that I need to be on oxygen when I'm out and about doing things. I'm also going to need oxygen when I sleep at night. I'm not excited about having my old friend back. However - I'm hoping the oxygen at night will help me sleep better and ultimately give me more energy.

There really isn't a whole lot left to try, the rejection has made itself at home and it's not going anywhere. So we are now in Maintenance Mode. EVENTUALLY I will be listed for another transplant, but we are not there yet. My Drs exact words were "lets milk these lungs for as long as we can." A 2nd lung transplant is complicated and not done that often. There is no telling how long it'll be before they list me or how long it'll be before I need oxygen all the time. Life just doesn't give you those answers.

I'm not sure what was worse, hearing that my body is failing, and well we know what that leads to, at 22 years old or 30 years old. I think this time around it's mentally tougher to deal with. I had already knew where my life was headed at 18, I accepted that. I accepted that I would probably never marry or live on my own or even see 30. It just didn't seem in the cards for me. Now, I have an amazing husband, a house of my own, I got my life back. Just this past Summer I was hiking up a mountain - now stairs are my worst enemy. So dealing with this drastic change has been a lot harder this time around. I got a taste of the good life and I'm not ready to give that up.

That being said, if you know me, you know I'm just going to keep doing me. I learned a long time ago that if I want to do it, I can - even if I'm slower at it or it takes me longer or I have to ask for help.  I'm not going to live in a bubble. I'm still going to go out and enjoy life. I'm so grateful for the past 4 1/2 years of awesome health - I would of been gone a long time ago if it wasn't for my donor. These bonus years have been amazing and I'm not done living yet. I may have bad days or feel depressed sometimes but at the end of the day when I close my eyes, its a way to reenergize and start over.

And to the questions I get asked most often...
- "What's next." I have no answer for this. I don't know. I'm just going to take it a day or week at a time. That's all I can do. I can't dwell on the negative- that's physically and emotionally draining.

-"How are you doing/feeling" - I'm fine. I'm feeling good. I'll let you know when and if I'm not feeling good.

- "What can I/we do?" Nothing. There is nothing anyone can do - this is just my life.

I appreciate the worry and love everyone has for me. But I'm not made of glass, I'm not on the verge of breaking. Please, don't worry so much. My Dad told me a long time ago - Until they invent time machines, if you can't change it, don't stress about it. And I live by those words. I try not to let too many things bother me. I'm still going to laugh everyday. I'm still going to go to work. I'm still going to do things that make people say "should you be doing that?" I'm still going to be me - I don't know how to be anything else. I'm always willing to answer or at least try to answer any questions you might have about CF or Transplant. I'm an open book, 95% of the time.

Breathe Easy

Tuesday, January 17, 2017

Ready to Catch that Break

Hello World!

Well 2017 is not going the way it should. My health is SOOOOO not cooperating. My infusions of IVIG are going just fine. Not fun, but fine. However I don't think they are working. I had CF Clinic yesterday and my lung function is down another 12%. FANTASTIC! That puts my wonderful lungs working at a total of 28% of normal.... 28%!!!!

This sucks! I thought for sure it was going to show I improved or at least was staying the same. I feel better, not great, but better still.  So I'm beyond frustrated with nothing working. My lungs were 76% in June... now 28. WHY?!? That is not ok. I just want some answers. I know the world of transplant and CF a lot of the time is trial and error to figure out what works best. But its so frustrating - the unknown.

I'm trying to stay positive and see the silver lining but I'm in too much of a fog right now. With talks of needing supplemental oxygen again - looks like the next step - to possibly needing a 2nd lung transplant - which I'm told is rare to even be able to qualify for 1, let alone get 1. I can feel the depression and anxiety setting in every time I visit the doctors.

This year was suppose to be the year Brian and I look into starting a family - my health puts all that on the back burner. I'm suppose to celebrate 5 years of my transplant... which I do plan to do, but now all I can think is "will I even be healthy enough to enjoy it."

Life is hard. I'm exhausted most of the time. Doing ANYTHING - shower, laundry, the stairs, walking long distances - it makes my Oxygen level drop to 90-92. Normal is 99-100. If it starts to drop below 90... which it has a couple of times,.. I'm going to have to go back on supplemental oxygen. An old friend I don't wish to see again.

Every transplant patient knows rejection will eventually catch up to them. How long that takes is different for every person. There are a lot of factors that goes into rejection from how well the organ matched the patient, to the compliance of the patient, to the organ that was transplanted, to what bugs you catch and fight off - a number of things. So in the back of my mind I knew this would happen one day. I just wasn't ready for it to happen now. And to happen so fast.

I go back to Cleveland February 2nd. Not sure how that appointment will go. Answers would be nice but I'm not holding my breath. There are talks of possibly more Rotuxin (chemo), or more Aparesis (not sure if that's spelt right, but the blood filtering thing). But I'm ready to try something new. I know there are a few more options we can try. I'm not giving up yet. I'm frustrated and angry about the situation but not giving up.

So my glove is wide open, Life I'm ready to catch that break!

Breathe Easy

Thursday, December 15, 2016

Can't Catch a Break

Hello World!

Well it's been up and down the past couple weeks. I had a couple of days with low grade fevers. Coughing a lot, but not productive. So that gave me a sore throat and my voice sounded like a dragon. Lost my appetite for a few days. And that was all before I went out to Cleveland for my hospital follow up.

Went out to Cleveland this week for my hospital follow up. I wasn't really expecting great news, but I wasn't expecting for everything to be way worse! My lung function is down another 9%. I'm now at 40% of normal lung function for a person of my age. What the heck?!?!?! So I have no real news on what we are doing. They took some sputum and blood and they are running tests to see if they can find an infection - virus, bacteria or fungus. I got another round of chemo. Which is good and bad. It's suppose to help kill the bad antibodies in my body right now which is good, but it's killing my immune system even more which is not good and makes me more likely to catch something.

The hardest part is just hearing "We aren't really sure yet." It's too early to tell if the Rotuxin and the IVIG are helping the way they are suppose too. But with my numbers dropping still we have to start looking for another possible answer. That is by far the most frustrating thing. I just want an answer with a plan. This waiting in limbo sucks.

So as I wait for my results back from Cleveland I'll dive back into my routine. Work 2 days a week. I'm so grateful for Brian. He does so much for me. I'm not sure where I'd be without him. He works his butt off for us and then when he comes home he helps me around the house. If I'm not feeling well he takes over everything. He is the best husband. He gets it. He pushes me and encourages me to do as much as I can. At the same time he helps me whenever things get to overwhelming. I don't think he gets how much I rely on him. He is a just some kind of wonderful.

Relationships are already hard. But when you add a chronic terminal illness to the mix, that's really hard. I know Brian had no idea what he was really getting into. But I'm so thankful he has stuck around. With every new challenge we come across - which our first major challenge was 2 months into dating - instead of running away, he steps up in full force.

Here's hoping the holidays will come and go with no major events. I'm scheduled to go back out to Cleveland end of January/Early February. Until then I'm trying to stay as healthy as possible. I don't need my lung function going down any further. Instead answers as to why would be a lovely Christmas gift,

Breathe Easy

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