Sad, Late Night Rant

So I sat down tonight with Cameron and tried to watch 65_RedRoses. Yeah... that didn't happen. I got all of 5 minutes into the film and couldn't stop sobbing. Cameron wasn't far behind me.

Yes, watching the film was hard. Actually, Cameron was the first one to say "well, that doesn't bring back all sorts of horrible memories" when Eva was coughing so hard that she couldn't breathe in the opening segment. But it wasn't that part that made me cry so hard. It's the plain fact that I miss her. I miss all of my CF friends who are no longer with me.

This is the reason I stayed away from support groups for so many years. I know the truth behind this disease. I know that the odds are not in our favor, that most of us will die way before our time. Even the transplant doesn't "cure" us. I learned that I had lost an online friend today. She had her transplant already, but was experiencing chronic rejection. It's the most horrible word I think they can tell us post transplant.



rejection




 A few weeks ago, I have having some major shortness of breath when I did things. It scared the shit out of me. There were moments that I just couldn't think right, and when I told my professors that I may have to go up to Cleveland to get checked out, they were fine... but I wasn't OK with that. I haven't missed a full school day yet. I don't plan on missing one. That's why I got this transplant - to finish school without missing a ton and to get a job and LIVE MY LIFE. But by getting short of breath while I was outside doing yard work, I had a moment of panic. That it was all going to go away. That I was rejecting... Turned out, I was freaking out over nothing. Looks like I've developed mild asthma, which I can deal with. But the panicking over the "unknown", boy, that just isn't for me anymore!

 So... back to the support groups and Eva. I only talked to Eva a couple times. I can't technically say that we were friends. She probably didn't even know that I truly existed. But to me, someone who was getting ready to have a double lung transplant, seeing her and reading about her was my lifeline. I clung to the fact that she made it to the other side. About a year after my transplant, while she was waiting for her second transplant, she passed away. Her death hit me as hard as Danny's death did. They were a couple of the people that I used to force myself to go through a surgery that I wasn't sure I wanted until about a month before I had it. They reminded me that I could be "ME" again, not just a bunch of tubes and a girl that was so dependent on everyone else. That I could actually LIVE. I could go anywhere and do almost anything I wanted to do. I could go back to school... Get married... Get a job... Have a family... All things that I'm accomplishing today.

Not married yet, but will be soon. Don't have a family in the traditional sense, but have 2 wonderful dog babies and plan to start the adoption process as soon as possible.

 It's just... somedays it's hard to keep putting one foot in front of the other, when you feel like you are surrounded by Death. That they are taking all of your friends away. And the scariest thought of all... that you may be next.

 But most days, I wake up just fine. I am excited (to a certain extent) to be going to class, or spending time with the ones I love. I look forward to August when I'll officially have my bachelor's degree. I try to remind myself that today, I am healthy. And then I try not to think too far in the future or too hard about everything else. I am blessed for today. I am one lucky girl who got a second birthday to finish all of the things I didn't think would happen when I was waiting for my transplant. And, I'd like to think that maybe... just maybe... I am the one that someone waiting for their transplant has held on to, to keep them going, keep them dreaming of what life will be like when you don't have to fight for air.

 I will say one final thing: When you don't have to fight for every breath, that first year post transplant is magical. It may be hard as hell, but it's something that I'd go through all over again if I had to.

Highly Emotional

I have been extremely emotional lately. I'm usually pretty high strung around this time of year though, being that I'm so close to my transplantiversary. Every year I start to go through my blog entries before, during, and after transplant and am absolutely amazed at how far I've come!

Just 3 years ago around this time, I was beginning to wonder if I was going to survive to transplant. I recall saying a prayer every night before I went to bed for God to just let me wake up in the morning. Just let me survive one more night. I knew my time was winding down and there was nothing left for me to do about it. I was depressed and scared and frankly, just down right pissed off that I had to go through the torture that is waiting for a double lung transplant.

4 years ago, I was just getting use to the idea that I was going to need this surgery. I wish I could go back in time to let myself know that things turned out ok, that the surgery wasnt as bad as I thought it was going to be and that I survived. That was the biggest thing that held back my going forward with the transplant process.

It's funny though if you think about it. In order to say that you want to live, you have to be willing to undergo a surgery that could very well cause you to die. You have to be on death's door. You have to be able to accept all of that and then move on slowly hoping that someone along the way had signed their donor card and told their family their wishes to be a donor AND they have to be a good match. If all of those little pieces fall into place then you get the greatest gift of all. You get to live.

Even better, you get to live with health. Something as a CF patient, was a little hard to comprehend.

Don't gets wrong, as a child, I didn't realize that I was "sick". It wasn't until forth grade that I knew that my lungs were much different than anyone elses when I got sick and had to do inhaled antibiotics for weeks. That's when things began to click. Even though I knew I had cystic fibrosis, I don't think I really understood what it really meant for my future.

Having everything happen to me the way it has, however, has been a blessing to me. It's allowed me to meet some great people online that I am so proud to say I'm part of that community. It was allowed me to look at life with a sense that I'm not taking a second for granted. I'm living life with every breath, every beautiful, deep, perfect, healthy, donor lung breath :)

With all of that being said....

Earlier this week an amazing advancement in the CF world happened. The FDA approved a drug that corrects the underlying cause of the disease. It will only work for one mutation though, even though there are thousands of combinations of the CF mutations. This drug will only work for G551D. Not the mutation I have. In fact, not the mutation that the majority of the CF world has. But it's a start. It brings hope to thousands that the cure for all of us will be found during our lifetime. And even better, that all of the children being born now have a chance to live completely normal lives!

I don't know where all of tears have come from this past week, but I do know that I am thankful to be alive because someone said yes. I am thankful for the brilliant people who are so close to riding this disease. I am thankful for all of the donations that my friends and family have given the CFF, because without them all of the funding needed to make this leap wouldn't have happened.

I am thankful at this time of year and I am blessed

Oh wow, this is hard work!

So instead of studying, I've decided to update my blog a little. I know... it's been forever since I've done this. I've been a little busy :)

Cameron and I have been slowly making plans for our wedding. The date that we want is June 7, 2013, and we are looking at venues now to find one that fits us, our budget and our date. That's been a bit of a challenge for the budget part. There's just so many details that I didn't realize that I'd be having to deal with. Every spare chance I have, I'm looking at things online. Right now I'm on a flower and invitation kick. Found a few flowers I like, but hoping that they won't cost me a fortune to get them.

I think I'm going to go simple for my bridesmaids bouquets. They'll be wearing purple dresses and I think I either want tiger lilies or tulips in orange for them to carry. With it being a June wedding, both should be in season, so not too bad for price and being able to find them. I want my bouquet to have orange and purple in it. It'd also be nice to have a good amount of green in it too to fill it out a little. But I dunno. I feel a little silly spending the amount that I'm going to be spending on flowers which will just die.... oh well. It's all about the pictures, right? haha

I do have my dress and my shoes though, so the important part of the wedding is taken care of :).



I've been working my way through the last year of school. It has not been easy at all. Last quarter I took Intro to CLS (an introductory course to the program which explains how the lab is set up, accreditation and lab techniques), Hematology I and II, and Clinical Chemistry. It was the hardest quarter of school I've ever had to go through! But, I did manage to make the Dean's List!! I have never been so proud of myself :)

This quarter is looking to be just as hard, if not harder. I'm in Clinical Immunology II, Clinical Practicum I, and Clinical Parasitology right now. In a couple of weeks, we'll take a couple weeks off Practicum and do Hemostasis and Urinalysis. Also, at some point, we're going to cover our Senior Seminar class. Not really sure how that is going to go, but I figure it shouldn't be too bad. My practicum site is awesome! I'm in the hematology department right now and have been running the machines and really getting good hands-on experience. I now know that this is what I want to do, and that makes me feel a little better about my choice of degrees. It would be rather frustrating if I were to go through this year and then find out when I got in the field that I hated it.

That's the basics of what's been going on with me... not much to talk about, but my days are pleasantly filled. I have my dogs, my fiance, and my health. Couldn't ask for much more right now :)

Engaged!

So I don't have a lot of time to go into the details of how it happened, but Cameron and I are engaged! He proposed the day after his birthday at his mom and his birthday party (they share the same birthday). All of our family and a few friends were there. It was simple and it was beautiful.

Here's a picture of the ring!


Now back to studying for school. I'm in clinicals now and don't have much time to spare. :)

Blogger Challenge

There are a few blogs that I follow on a regular basis. Especially being post-tx, I have less time to focus on them as I have had in the past, but since I've taken this summer off from school, I've had plenty of extra time to catch up on my online community that helped me get through so much in the past few years. One of them is Piper and she is now post-tx herself and is very active in the CF community. Her blog gave a challenge to her readers, which I found interesting...


1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.

2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.

3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.

4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.

5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.

So here it goes...






I've mentioned in other posts that compliance is something that I feel is held over the heads of those of us with chronic diseases. Especially before transplant, I felt that it was a threat from people who held the power over us for recommendations for transplant. If we don't do our treatments as told, if we don't take our pills exactly, if we don't exercise like we should... basically, if we're human for a day and forget something we run the risk of not getting recommending for transplant, should the need arise. It's a lot of pressure to place on a person their entire life!

At the same time, compliance is not the only piece to the health care puzzle. I had one doctor who would constantly remind me that I needed to exercise more to maintain my lung function. That it would help me build muscle which would help me maintain my weight. Weight and lung function go hand in hand, so it would seem like if I could keep my weight, I would keep my lung function. (What a mouthful of twisted thinking...) All of that being said, any time I had a decrease in lung function, especially after a few weeks of IVs, the doctor would simply shrug her shoulders and tell me it was just the nature of the disease to gradually decline over the years. So in a way, she was playing both sides of the issue... You need to work harder, but if you fail, it's not your fault. It was very confusing to me. I was constantly told that it was my fault for failing lung function while in the same breath being told that it wasn't my fault, it's the disease's fault. Confused yet, because I am! That's what I feel this poor young lady is being told (from Piper's blog)

Here's what I came up with to help my own sanity:


CF is a crazy bitch.


I believe what my doctor was trying to tell me was that with regular exercise, treatments, medication, etc. we can control how quickly we decline. In some cases, people have been able to reverse the downward trend, but that isn't the case for everyone. To help not get so discouraged many fall back on the mantra "It's the nature of the disease - it's progressive and not my fault." While I feel that this is OK to get you through the rough patches, I don't feel that it is what patients should hold on to. I personally feel like this is accepting your decline and in my case, my fight declined.

Waiting for transplant, I continued to deteriorate on a regular basis. It was what was expected of me and at times, I almost felt it was encouraged to get me a higher LAS score. Get me closer to transplant. While I wanted to live to make it to transplant, I had a hard time finding the fight to continue pushing myself to try and get "better". It was a weird backwards world for me, not fighting and not feeling like I had control over myself, where we almost celebrated the decline. What was even more strange to me was that when I woke up after my surgery, it was like a switch had been flipped and I expected everything to be going up instead of down. I was willing to work again and push myself to get "better". Basically, the point I'm trying to find here is that I think our attitude to which trend we should be following (for me) is in the hands of our doctors. If they expect us to get better, we expect it to. If we fail in any way, many of us take it far too personal. Lately though, I have found that going home and looking at where I started and see where I am today (regardless of the results of the last test) I am still better off... I have still gained ground. It makes me feel a little bit better about how things are going.

Maybe, for those starting the transplant process, or those who are in the middle of it, need to realize that even though you are declining you have to keep fighting. That's what proves to the transplant center that you deserve a transplant. As long as you are trying, you are winning. I know... corny... but that's what they look for. And for all those CFers wondering if they are going to be a candidate for transplant, most centers that that you are a CFer into consideration. You can take millions of pills a day. That's a key to surviving post-transplant. You know that exercise is a key to life. That will only help speed up your recovery.

So after feeling like I've just rambled on and on... I hope that someone got something out of this. Best wishes to all of my Fibros and Cysters and I hope that everyone keeps fighting, regardless of what your current status you are at. <3