The best laid plans of mice and men

I've been home from the hospital for about a week and a half now. If you've been waiting for an update on the wonderful surgery I had to endure before I went home, than you will LOVE this post.
It was determined by an MRI with contrast that I had a clot in my superior vena cava. My port catheter seemed to go straight through the clot, and that's why my port still worked in spite of the clot. Seattle decided based on the MRI that they wanted to have a stent placed in my SVC before I was listed. I would do ANYTHING for transplant, and I really do believe the transplant evaluation weeds out the lesser determined people. Because god only knows why someone who doesn't really want a transplant would endure all of that. So there I was, a girl willing to do anything, who had to do EVERYTHING and a lot more.
The plan was to go through the femoral artery in my groin, move the catheter temporarily and get the clot out. Wham bam it's done. Unfortunately for the team, my poor family and friends, and most of all me...I am a freak of nature, and the clot decided to be complicated.
Here's what really happened.
The clot was wrapped around the catheter and had adhered to the walls of my SVC. They were unable to place the stent without locking in the port which is far too old to be left in there, the call to not do anything was made. In the midst of all of this, a little piece of the port catheter that was sticking out of the clot broke off and decided to go for a crazy ride. The doc went in after it and managed to get most of it, however a little piece lodged itself in my upper right lung. The whole procedure took 7 hours, and went until 12 am. They went in once in my right femoral, twice in my left femoral, and once in my neck. I'm sure my retelling is not that great, and there might be some blank spots but I was out of it and couldn't make sense of it all in my drugged haze. The conclusion is that the clot didn't get removed, my port didn't get replaced, no stent was placed and I'm going to have to go through an even more invasive surgery to fix all this.
A day prior to the procedure my nose started bleeding every time I coughed really hard. The reason is still a little unknown, but it was thought to be the oxygen that over time eroded one of the superficial vessels in my nose, and the pressure from my cough would make whatever clot had formed burst. My nose would clot and then I would cough and it'd bleed again. It was a gross mess!! It continued for several days after my procedure too. In addition to the nose bleed, I had a fever for several days but had no infection, I couldn't hold any food down, and I was in a lot of pain. There were 2 small hematomas that formed; One in my neck, and the other in my left groin. For about a week I was taking pain meds pretty consistently.
All of it was way more disgusting and disturbing than I can even put into words, and I'm disappointed the stent wasn't placed.
BUT I'm grateful to my cardiologist who knew better than to do it anyways, to my doctors for allowing me pain meds, and to the wonderful set of nurses I handpicked for post procedure.
Out of all this I learned a couple things... The first is that even on the surgery table you can make jokes about funny socks, and David Cassidy. The second is that I have the BEST care team in the world. My mom and my husband are so amazing, and they work so great together as a team. I knew my husband would be there for me and care for me, but I had no idea to what lengths he would actually go. Now I know there's nothing he wouldn't do to help me, or care for me. (which is EXACTLY what you want in a husband!) As for my mom.....Well, I couldn't dream up a better mother. She is so many things to me! My survival is so intricately entwined with hers, and I can't imagine any part of my life without her in it.

So the procedure did NOT go as planned, but a new plan is in the works and we'll know soon what is to be done about it. I do know this though, I'm in GREAT hands! I just have to keep the faith in all members of my care team, keep a lid on my misemotions, and not panic. I will get on the list, I will get my clot fixed, and I will be okay. I know all of that, I just have to keep knowing it in spite of whatever I have to go through to get to the end. :) But THAT is what I do, it's what I must do. Suck it up, be brave, and KNOW that everything will all work out the way it's supposed to in the end.

My Husband

Today is my husbands 21st birthday so I'd like to take this opportunity to talk about how much I adore him.
First of all, he's one of the most caring and loving people I know. Our parents introduced us, and when I first met him I thought he was the cutest boy I'd ever seen. I was a little mislead by our first interaction with each other. He came off as this "I don't give a damn, I'm super cool and I know it" kind of guy, and I wasn't sure if I wanted to deal with that. I can only imagine what Morgan thought of me....."She's a weird girl who says weird things, has a weird laugh that's always accompanied by a coughing fit" That's how I felt anyways. I hear from him now how weird he thinks I am, but we're married so I'm not going to worry too much about putting on an act. :)
We hung out a few times over winter break from school. I was sick and spent the whole time hacking, snotting, sneezing, and running to the bathroom every few minutes to cough up mucus. I wouldn't by any means call this endearing, but he sat and watched movies with me, asked me if I was okay, brought me water, and eventually cuddled with me. I started to know him as a shy boy who had a huge heart, and so much love to give. Eventually I couldn't see my life without him in it. Now I know him as the love of my life, my best friend, and my husband.
We have now been together for roughly 5 years. I couldn't be happier spending my life with anyone else. He is an amazing man with a very loving heart, and a sense of humor to boot. What more could a weird girl with CF ask for?
By the way.....He's still the cutest boy I've ever met.

 

 My rock star husband.

He's kind of a big deal.

HAPPY BIRTHDAY TO MY ONE AND ONLY LOVE.

Hello Doernbecher!

I'm in the hospital again. Standard thing: IV antibiotics, Chest Therapy, and some much needed RandR/TLC.
One would think that checking into the hospital would be a bleak experience, but I find that the kind of sick I get requires being admitted. The relief I get when I make my hospital bed and plug into some oxygen is so extreme. It's a safe place, where I know I can get better and the accommodations aren't too bad either.
One of the other bonuses is how long I have known most of the nurses here on 9N (8-15 years). These people are like my second family, it's my home away from home, and the bonds I have with some of the staff are amazing. There's no doubt that this is a loving place with people who love me, who I love back just as much. After only a week I am feeling much better, so much better. I am so thankful to the Cystic Fibrosis team here, and all the nurses who take care of me. Who knows where I'd be without such an awesome team looking out for me.
I have lung function tests on Monday to just see where I'm at. Unfortunately I won't be going home anytime soon because I have a surgery coming up. I'm getting my portacath replaced, and having a stent in my superior vena cava. I really wish that I wasn't too lazy to type out what those were. The links will take you to their wiki pages. :) Anyways, the surgery will be at the end of next week most likely. I am a little nervous, but I know that it will all be okay.
It's a pretty uneventful stay other than the surgery, which I am so grateful for. Here's a picture of me in my hospital bed.....Super foxy like of course.

To travel...?

The beginning of fall brings back many lovely memories from my childhood. One of my favorite though is the beginning of a new school year. I miss school shopping, and getting all my things together the night before, riding the bus, seeing my old friends and making new ones, but most of all LEARNING! I've always been a little geeky about my education. I love learning new things! Ever since second grade when I learned about Australia I've been completely enamored with history. It quickly grew to be my favorite subject, and I definitely flourished in it.
I've always wanted to travel and have adventures, but in my life I was never really able to do so without getting sick. However, I found out on my last trip to Seattle that Post-Transplant I will be able to travel. I immediately started listing the many places I wanted to go, but when I got back to the place I was staying the first place I looked up was Australia. I felt like a little 8 year old, once again learning about the world and planning the many trips I would someday take. This time it's different though, because now I know I will be able to go places, I know that my love for history and travel will grow fonder instead of resentful. I am simply in awe at this new opportunity.
The leaves are turning and the weather is changing, all of it reminds me that fall is just a worldly reflection of the change in my own life. I'm a completely different person now than I was last year at this time. It's a wonderful change, and I couldn't be happier, or more excited about my life. Of course my health will get worse before it gets better (post-transplant), but in the meantime I'm looking forward to this sight.....Ayers Rock. My first love in history.