Friday, May 27, 2011

And that IS my final answer

Back in April I wrote a little bit about my rocky relationship with PICC lines. Long story short, last month I had to start thinking about whether or not I wanted a port. I began asking anyone and everyone I knew for their opinion on the subject. I conducted polls on Facebook. I emailed several CF friends - some with ports, some without. I talked to the nursing staff here in the hospital. The overall response I received was very much in favor of the port.

On the other hand, there was the occasional getting a port means admitting that I'm sick enough to need a port type of comment. And of course there was the disturbing story someone shared about the blood clot in their port that nearly killed them. Fantastic.

Some things about ports that I had to consider:
  • risk of infection and/or blood clots - both can be very dangerous
  • upkeep - it needs to be flushed monthly when it's not in use
  • permanency - once it's in there, IT'S IN THERE
Eventually I decided that if I stayed well and out of the hospital for a year or so (wishful thinking), I'd probably try a PICC line again. If I had to come back earlier, say, within the next 6 months, I'd consider a port. When I found myself back here just three weeks after being discharged, I figured a port was the only way to go. I was mentally prepared to just get it done but then one of the sweet cysters on the floor called in a favor from her friend down in Interventional Radiology and he came up to my room to discuss my options.

He explained the way they do things down in IR (with the use of X-rays and sedation -- the good kind, not just a little pill) and told me that a PICC line may still be a reasonable option for me, as long as it wasn't done bedside. He brought an ultrasound machine from IR (the PICC team also uses ultrasound when they place PICCs, but his was quite obviously a much better machine) to take a look at what he was working with.

"How many PICCs have you had?" he asked.

"Uh... six."

"Wow. Only six, huh? Your veins are pretty shot!"

"So I've heard."

Our conversations went back and forth like this while he continued examining my arms until he finally told me that, yes, there were a couple possible entry points for a PICC and he was confident he could place one without causing me any emotional trauma. .

So now I was torn. I came in all ready to get a port but then he waltzes in with his fancy machine saying "I think you have more options". HE GAVE ME OPTIONS, GUYS. Not only did he give me those options, he answered absolutely every question I could think of then gently encouraged me to make a decision for myself, no pressure or coercion involved. I tried to make him just TELL me what to do, but he refused. WHO DID HE THINK HE WAS???

His final piece of advice was basically "flip a coin" because either option would be a good one for me, as long as I was happy with it. I was able to think about things overnight since they didn't have an opening in the IR schedule until the next afternoon. I was very back-and-forth on the issue. PICC. No, port. Definitely port. Well, maybe I'll just do one more PICC. No, I might as well get a port and just get it over with. Port, for sure. No, PICC. My last PICC. But what if...

I was fairly certain I had made my decision as I was wheeled down to IR, but then again as I changed into a gown and climbed onto the table, I began second guessing myself. The nurse was just about ready to push the sedative into my IV when she asked me, "Now, are you sure this is what you want to do?"

I don't remember whether or not I gave her a final answer.


Later that night when my nurse told me my new port flushes "like a dream", I knew I'd made a good choice. I'm so glad I did this and I'm beyond excited by the thought of never having another painful PICC placement again.

Plus, I never looked this cool getting wrapped up for a shower with a PICC.

Wednesday, May 25, 2011

Here again

I'm too tired and drained to even try to be clever right now, so I'm just going to give the details. I'm back in the hospital. I got here yesterday. I started feeling sick on Monday night -- shortness of breath, fever, increased cough, the whole shebang. It all hit  so quickly. I went from feeling great to feeling like total crap within a matter of a few hours. Tuesday morning, after sleeping very little, I woke up feeling like my lungs had been taken out of my chest and run over by a truck.

I had an appointment scheduled with the CF clinic for Wednesday (today) because of the cold I caught shortly after I left the hospital last month. But I'd had such a good weekend and felt so great that I'd actually called earlier Monday afternoon  to cancel that appointment. When I woke up feeling so terrible on Tuesday, I immediately called to try to reschedule. I was told to go to my primary care physician (who, incidentally, we were already going to see because Morgan got pinkeye) then to call them back and we'd make a plan from there.

Our family doctor did a quick check-up and confirmed that I have pneumonia again (which I've been prone to since I came down with a terrible case of it in 2009). My oxygen saturation was sitting at 85 and my heartrate was around 150. She told me that I needed to get to my CF clinic right away. When I called clinic to let them know what she had said, the nurse coordinator told me to get up here as soon as I could and that I'd have to be admitted through the ER.

After a stressful few hours of packing, picking up prescriptions for Morgan, making arrangements for child care, picking up oxygen tanks for the ride to Salt Lake and trying to tie up any loose ends that we could think of last minute, we were finally on our way. I got here in time to do PFT's (which turned out to be awful, by the way -- down a full 40% from when I left the hospital last month!) and was somehow lucky enough to bypass the ER altogether. I was taken from the PFT lab, to admitting, to my room within a matter of minutes.

So here I sit, frustrated and completely baffled by the recent events that got me here. Never in my life have I been hit by something so hard, so fast. I'm quite angry at CF right now and, if I'm being totally honest, I'm scared.

Monday, May 23, 2011

Just what I needed

We took full advantage of the sunshine this past weekend and took the girls to Hogle Zoo. We made the same trip in October, but Morgan has become a lot more interested in animals since then so we knew we wanted to take them again soon. However, it was a total spur of the moment decision to do it on Saturday.

Our friends, Holly and Evan, and their boys Kyle and Aiden, were able to meet up with us. Thanks again, Holly. I'm not used to having friends in real life in Salt Lake and since we hadn't really planned on going, I didn't even think to get a hold of them ahead of time. Holly just happened to see the following status update on Facebook and got in touch with me: Woke up with the urge to go to the zoo, so that's where we're headed. Shylee has just informed me that this makes me "like, really cool". Hoping to raise my status to "like, totally rad" by hitting the gift shop this afternoon.

One of my favorite conversations of the day was about Kyle's total lack of fear of the Zoorassic Park dinosaurs. Evan questioned whether or not Kyle knew enough about dinosaurs to survive in the event of a real-life Jurassic Park catastrophe. What if he didn't realize he should run away from the dinosaurs? Judging from the picture above I feel pretty confident that Morgan would have the appropriate reaction if she ever came face to face with a velociraptor. And now I can sleep easy at night.

Morgan isn't really down with Shylee treating her like a smaller child -- holding her hand, picking her up, that kind of thing -- which is all Shylee wants to do. She doesn't feel like she's magnifying her calling as Big Sister unless she can do these things but when she tries, she usually ends up with bite marks or a shiner under at least one eye. Kyle, however, loved all the attention from Shylee and these two became fast friends.

We did have one close call, but fortunately
we all made it out in tact.

Overall, the day was great. The sunshine, the girls' smiles and giggles, the $30 zoo food, spending time with friends outside the hospital  (Holly is a very faithful visitor and so far our entire relationship has been confined to a hospital setting)... everything was exactly what I needed!

Well, I guess I could have gone without that $30 lunch.

Friday, May 20, 2011

Introducing Marlo

I'm not a cat person. Aside from thinking they're kind of yucky, I'm allergic to them. (Maybe that's why I think they're yucky.) Simply put, I don't like cats. That said, please say hello to Marlo, the newest member of the Livingston family.

When I saw her cold, wet little body swaying in the wind as she clung for dear life to a flimsy tree limb, I knew we had to help her. And when I heard her purr as Morgan kissed her on the head over and over again, I knew there was no turning back. We officially have a pet cat.

For the record, I still hate cats. But isn't she just the cutest?

Monday, May 16, 2011

The things I write about

So, my blog has a fun feature that allows me to see recent search terms (keywords that have recently been searched, ultimately leading someone to my blog). I just wanted to share with you a few of my favorites:
  • cystic fibrosis blogs
  • vx-770 and vx-809
  • Shylee's baby dies in car accident 
  • Why can't we get along since the birth of our baby? 
  • poop
First of all, a couple of those are just weird, right?  Like, creepy weird.

Second, it's hard to describe the feeling you get when you learn that your blog is the place people go to read about diseases, drugs, five-year-olds with children of their own (who die in car accidents, no less) marital problems and, my personal favorite, poop.

I'm officially a poop blogger.


Saturday, May 14, 2011

Sugar poop is still poop

Earlier tonight, while the girls were getting ready for bed:

Shylee: Why do we have to brush our teeth every day?

Me: Because the Sugar Bugs poop in your teeth and if you don't brush them clean, the poop rots your teeth and makes you have stinky breath.

Shylee: Oh... I don't want ANY poop in my mouth. (Brushes faster.)

Morgan: Yay! Poop!

Friday, May 13, 2011

Because you asked

I know a few of you have been looking for a health update. I know that because a few of you have actually emailed me asking for a health update. Really. People read my blog and then they email me. Isn't that just the neatest thing?

I've been home from the hospital for about a week and a half now. I've been exhausted since I got home -- no, really, EXHAUSTED! -- physically, mentally, and (perhaps most of all) emotionally. It was a hard stay for me. Honestly, I have never had such a difficult time recovering from the hospital.

Taken three weeks after my PICC placement.

There is always an adjustment period when I get out of the hospital. It seems like since my life came to a screeching halt for two weeks, everyone else's should have as well. I'm not sure what I imagine the rest of the world doing for two weeks, but it's always strange for me to realize that life goes on outside of the hospital.

I came home on a Friday and had to go right back to work the following Monday. Morgan got sick the same weekend I was admitted and was still sick when I came home. Since then, Adam has also been sick. Adam has been working a lot of mandatory overtime lately, moving the longwall. (Not sure what "moving the longwall" means exactly? Join the club. It's coal miner talk -- something I don't even pretend understand yet. But when I search for "longwall" on Youtube, this is what comes up. Kinda neat.)

I kind of feel like I've been put through the wringer: a painful, stressful, and emotionally charged hospital stay, coming home to a sick little one and soon enough a sick husband as well, immediately returning to work, feeling like a single parent while my husband busts his butt for 70 (or more) hours a week, dealing with random fevers and (a new development as of tonight) a sore throat myself.

I don't mean to complain, really. I know it sounds like I'm feeling pretty down and out right now, but I'm actually not... too much. I do feel better than when I went in (my PFT's jumped up 31% in that two weeks, so obviously my lungs are feeling much better) and I'm getting more energy back with each passing day, it's just been harder to appreciate those things with everything else that's been going on. Maybe the reason I've been delaying this post is because I didn't want to sound dramatic.

So, to sum it up: I'm feeling better every day. I may have caught Adam and Morgan's cold (praying that's all it turns out to be). I'm still a little battered and bruised from the PICC line from hell and I'm really, really, really, really tired.

But most of all, I'm just SO HAPPY to be home.

Tuesday, May 10, 2011

That dog

Remember that scene in Lady and the Tramp when Tramp warns Lady about life after baby comes?

"Just wait 'til Junior gets here," he says. "You get the urge for a nice, comfortable scratch, and... Put that dog out! He'll get fleas all over the baby! You start barking at some strange mutt... Stop that racket, you'll wake the baby!"

He goes on to tell her that someday soon her juicy cuts of beef and warm bed by the fire will be replaced with leftover baby food and a cold, leaky dog house.

Oh yes, things would change after that baby came.

Dixie has never seen Lady and the Tramp. Well, not that I know of anyway. I guess I can't guarantee she hasn't stuck it in the DVD player, popped some popcorn and snuggled under some blankets on the couch to watch it while we were at work one afternoon. The point is that as far as I know no one ever warned her that things might change after Morgan was born.

Now, she doesn't have to sleep outside and we have never given her strained peas for dinner, but Dixie's life is very different than it was a couple years ago. For starters, she used to be allowed to cuddle in bed with me in the morning. As soon as Adam left for work, Dixie would come running into the bedroom and curl up right next to me and we'd sleep that way for another hour or so until I had to get up. That doesn't happen anymore.

She used to sit at my feet when we watched TV, she went on car rides with me almost daily, she'd follow me around the house as I did household chores or got ready for work in the morning, and she was known for sneaking in the bathroom and jumping right in the shower with me. But now there's a little person who follows me around everywhere and, well, Dixie would just rather stay in bed where there is less chance that she'll be mounted like a horse and have her ears used as handlebars.

I never thought my love for my baby girl Dixie would change but if I'm being totally honest, after I had Morgan, Dixie kind of became that dog. I'm a little ashamed to admit it and Dixie is understandably upset. Okay, okay, "upset" may be a bit of an understatement. She now spends most of her time curled up in her bed listening to angry music, and the other day I actually caught her reading a copy of Listening to Depression: How Understanding Your Pain Can Heal Your Life. She hasn't made eye contact with me ever since.

Do you think it's too late for Lady and the Tramp?

On the bright side, at least now when Morgan wants to learn about poetry or black eye makeup, we'll know who to send her to.

Saturday, May 7, 2011

Wonderful women

I happened to snap this picture at my mom's house last weekend and truth be told, I absolutely love it. Not because I'm a great photographer (I'm not) or because the quality of the photo is extraordinary (it's not).

I love it simply because of the beautiful people in it. I wish I knew the words to describe how fortunate I am to have these women in my life.

Mom and Grandma, I am incredibly blessed and so very proud to be a part of you. Thank you, I love you, and Happy Mother's Day.

Oh yeah, that baby is pretty
stinkin' cute, too! 

Tuesday, May 3, 2011

Guest post: Can you blame a girl for hoping?

Because it gives me a great excuse not to write while I'm struggling to get back into the swing of things post-hospital, and because I think she did a great job of articulating what I so often feel myself, I wanted to share with you what my sister recently posted on her blog. (Normally I'd just link to it, but her blog is private so many of you wouldn't be able to view it.)

Teresa is my older sister who also has CF and just turned 31. (I hope it's okay that I just told everyone that. If not, we can pretend I said 25.) Thanks again, Teresa, for writing this and letting me share it. Love you!

I wrote this post a couple of weeks ago but because the tone of it is quite different from what I normally write on this blog, I hesitated to post it. However, in the interest of May being National Cystic Fibrosis Awareness Month, I am posting it anyway. I apologize if it is a little negative, but it is honest and hopefully gives a little insight to living with cystic fibrosis.

My sister was admitted to the hospital last week for another two week stay to treat her cystic fibrosis. This is her third stay in nine months.

She called me the day before she went in and we talked for quite a while. You know, I really wish Jenny didn't have CF (well, I wish I didn't have it, too, for that matter), but since we both have to deal with it, it's nice that we have each other. It's nice that we can share our thoughts and feelings and know that the other has either felt that way, or at least understands at a more personal level than most other people can understand.

Well, we talked a little about how these hospitalizations have become common place enough that we no longer burst into tears in front of the doctor when he says "well, I think it's probably time to come in for a clean out". There is no bargaining, or begging, or pleading. No "I promise I'll do my treatments 4 times a day. Just don't make me come in the hospital." In fact, usually now, when we feel sick enough and are having a hard enough time breathing we are the ones telling our doctors "I think I need to come in." Our admissions are more matter of fact, a little less dramatic than they used to be.

But there's another side, a more practical side to having to be in the hospital, and it is this side of it that had Jenny stressed out when we talked on the phone. When a mother knows she is leaving her children and husband for two weeks there is plenty of laundry that needs to be washed, a house that needs to be cleaned, and grocery shopping that needs to be done. All the while you want to spend every second possible with the babies and the husband that you will miss and try to alleviate the stress that you know they will feel in your absence. There is a lot of worry for our husbands who have to shoulder jobs, housework, cooking, and children while we are away. It is an all around stressful time for everyone.

When I was born, the average life expectancy for someone with CF was 18 years. So many advancements have been made and that number is continually on the rise. It is not unrealistic to expect to live to 40's, 50's and beyond. And as I said, the life expectancy is always gettting longer. But the fact is, that even if Jenny and I can hope to have near normal life expectancies, these hospitalizations are never going away. CF is a progressive disease, and we have to come to terms with the fact that our time in the hospital will only increase. These lung infections will only get more frequent, and our time spent doing treatments at home will take an increasingly large chunk of our time. I think we both have a pretty optimistic outlook on our lives and our illness, but in the quiet moments, this is the reality that we have to come to terms with.

I just finished participating in a study for a new CF drug, VX-809. It is actually used in combination with another drug VX-770 (770 alone can be used for some people with CF but for those with the most common CF mutation the two drugs must be used together). These drugs are the first that are aimed at correcting CF at the root, the cellular level, rather than treating the symptoms. Clinical trials of the VX-770 have had amazing results. Lung function of study participants increased an average of 10% and they had significantly fewer cf exacerbations. Basically, lung function improves and then remains stable. It is anticipated and hoped that the VX-809 will have equally amazing results.

So,what exactly would this mean for me and Jenny? It would mean our lungs would improve to within normal functioning capacity. It means our trips to the hospital would be few and far between. It means, as my doctor explained to me, that we would "maybe have to do your treatments every once in a while, like if you got a cold or something." It means that we would be "almost normal" (a great post on the topic by my friend, Cindy).

The studies for VX-809 are in the early stages. No one knows if it will work the way we are all hoping, and even if it does, there is no guarantee for me and Jenny that it will work for us. There have been plenty of times in the past when it was thought we were very close to a cure for CF, yet we still haven't quite gotten there. So I understand the people who may be thinking "don't get your hopes up yet." or "don't put all your eggs in one basket". And yet, my hopes are up. My fingers are crossed. I can either make peace with the reality that is currently before me, or I can look optimistically toward my future, believing that "almost normal" is truly within reach. Given my options can you blame a girl for hoping?

Now, on a slightly different topic, a friend posted this analogy and related it to a diagnosis of CF (particularly for parents of children with CF) but I think it applies to me, living with CF, and hopefully can apply to many of you in the various struggles and challenges you face.

Emily Perl Kingsley
c.1987 by Emily Perl Kingsley. All rights reserved.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Happy CF awareness month, everyone!