Part 2

So, where did I leave off? Oh yeah, probably the worst place I possibly could have, and then I disappeared and didn’t write anything for a week and a half. Sorry about that.
My brother sent me these pictures (taken by my dad shortly before I was sent away in the ambulance) and I wanted to post them so that 1) you could all bear witness to the fact that I waited way too long between dye jobs (look at those roots!) and 2) so you could see for yourself how fantastic my family is.
Both my brother Tommy and my dad were with me in the ER that night. They took turns wrapping me in blankets, getting me water and rubbing my back which provided some relief from the pain. Tommy stayed with me right up until I was wheeled out of the hospital and then he, my dad and Adam (edit: my ex-husband) all drove up behind the ambulance. The men that I have in my life? Fantastic, I tell you! They really don’t get any better.

 

The days following that ambulance ride were some of the worst of my life. I was sleep deprived, in a terrible amount of pain and absolutely terrified. I was being well taken care of and I know I must have been on some good drugs because there’s a solid week that is just a blur in my memory, but apparently I was in pretty bad shape.

Visitors were in and out of my room, some that I don’t remember seeing at all. I have a collection of saved voicemails, facebook messages and entire text conversations that I have no clear recollection of sending/receiving. Adam and my cousin Niki laugh about how I’d be sitting up in bed having a conversation when all of a sudden they’d look over and I’d be sound asleep, still sitting upright. I actually fell asleep while I was going pee one day (fortunately Niki was right there to wake me up/make sure I didn’t fall off the toilet and crack my head open) and apparently I thought it was hilarious enough to re-tell that story multiple times a day… several days in a row. Again, I blame the drugs.

At some point during the first few days of my stay they discovered that not only did I have multiple blood clots throughout my lungs, but a clot had also attached itself to the tip of my port (in my heart). My doctors began talking about removing my port because some of the other symptoms I was having led them to believe it was infected. (Since I’d already received antibiotics at that point, all the blood cultures came back negative so really, there’s no way we’ll ever know if it was infected or not.) The problem at that point was that pulling my port would risk dislodging that clot and possibly sending it down into my lungs. Since it was considerably larger than the clots already in my lungs, we had no idea what further issues that might cause. Ultimately the potential benefits outweighed the risks and my port was pulled. Fortunately the surgery was a total success and everything went as well as it possibly could have.

After several days of being in the hospital (receiving more medications and being hooked up to more monitors than I thought was possible) things finally started looking up. I remember thinking one day, “I can actually feel myself getting better today!”

My brother Jason drove up from San Diego and stayed with me the night of the port removal, and then again the night after that. It was great to see him and actually get to spend some time with him, though the circumstances definitely could have been better. He was around to witness some of the worst and most painful moments for me, which probably wasn’t easy for him, but he was also the one who got to witness my most drugged-up moments which will provide entertainment for years to come, I’m sure. (“Did you eat a good candy?”) Jason, if you’re reading this I want you to know how much it means to me that you were there. I’m lucky to have you and I love you so, so much! Thanks, Big Brother.

This is probably the WORST picture ever taken of me, but it was a
momentous occasion  — I finally had an appetite and needed some
hash browns! Also, this was about five days into my stay and
it was the first time I’d ventured out of my room.

I’m home now. I’ve actually been home for a week, but things have been so different this time. I usually come home feeling pretty great, but this time I came home feeling very blah. My lung function was significantly below my baseline when I left the hospital, but I’m told that’s to be expected. Apparently blood clots take weeks to dissolve and reabsorb, and as long as they are in there, my lungs won’t be able to function properly. Once the clot issues are resolved, I can start working on getting my lung function back up where it needs to be.

Treatment for blood clots, as one might assume, is blood thinners. I could (and probably will) write an entire blog post about my experiences so far, but for now let’s just say that blood thinners are going to make the next few months very interesting.

The best news is, well, first of all that I made it! I’m alive and (relatively) well. This was by far the most critical and terrifying experience of my entire life, but some good did come of it. When a person finds themselves lying in a hospital bed, forced to examine their life and ask what they’d do differently if they could, it really opens the door for change… and guys, I can’t wait to tell you some of the things that are changing around here!

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.