The Price of a Few Months’ “Life”

As if my body somehow can read a calendar, I am back in the hospital. I have been averaging an inpatient stay for IV antibiotics every six months or so, and I was last inpatient in December, so it’s about time.

Things Start Brewing

It was only two months after my last hospitalization when I started feeling sick again. It started as a sinus infection – the same mutli-resistant bugs that colonize in my lungs also live in my sinuses.

Three weeks of oral antibiotics didn’t work, so I ended up needing an antibiotic rinse for another few weeks. During that time, the bacteriae in my lungs started florishing, and over the next month or two, we exhausted all of our other options.

I visited my CF clinic several times in the past month to check my lung function, and each time, my numbers went lower and lower.

Decision Time

By the end of April, my FEV1 – a measurement of how much air I can blow out in one second – was down nearly 30% from December.
I was coughing more, had increased junk in my lungs, and got to the point where I was sleeping contantly.

I called my doctors on Monday and they decided to admit me the following day. I had to wait until nearly 8pm for a bed, but started IV antibiotics immediately.

A huge challenge lay ahead of me, however. My doctors usually prescribe three IV antibiotics – medications that are very toxic to the veins. Instead of “regular” IV lines, called “peripheral lines,” we need to use an IV that goes into a much larger vein.

Among the few options I had was a PICC line, an IV that is tunneled into the upper arm and threaded though a vein that empties near the heart. The kind that I use is stitched in place, and has two lumens (tubes).  Another benefit is that the nurses can draw blood from it – like a spigot, which would mean I wouldn’t have to get stuck several times a day.

A PICC line can last several months, which is useful because I am on these antibiotics for 2-3 weeks at a time. However, because of damage to my veins from previous blood clots, inserting a PICC line is more challenging.

It is inserted under x-ray, in the Interventional Radiology department. In addition, due to the amount of work and time involved, I receive “conscious sedation” – a combination of pain and anxiety medications – to make the process less painful and scary for me.

The biggest hurdle is getting on the schedule. I woke up Wednesday morning hoping to get it placed, but I got bumped.

Playing the waiting game.

The next hurdle is dealing with the delicate “regular” IVs and having blood drawn several times a day until I get my PICC line. The smaller veins in my hands/wrists were getting irritated and flimsy. I was running out of places to stick.

The aftermath of several blood draws and a blown IV .

On Thursday, they attempted to place the line, but couldn’t get the line in after nearly 3 hours of work.

Attempt #1 failed.

 

I was despondent.

I was told that they would try again on Friday, and I waited impatiently. I was miserable. Since Tuesday, each morning, I had to abstain from food and drink after midnight because of the sedation (aspiration of food and drink is possible when sedated).

Friday came around and I was starving, getting dehydrated (which makes it harder to place IVs and draw blood), and completely exhausted.

Was it ever going to happen?

As the day went on, I kept getting mixed reports that I was on the schedule. Finally, a note popped up on my calendar slating my PICC placement for 6:15pm. Six o’clock came and went. 7pm, too.

Interventional Radiology department (IR) rarely places PICC lines at night or on the weekend unless there are emergencies, so I was getting really worried that they’d bump me again.

Wasn’t this urgent?

I needed these medications and I was quickly losing access options!! I was at risk nutritionally and feeling really scared.

Around 8:15 pm, as I was frantically texting my husband and a few of my CF friends for support, there was a knock at my door.

A transport rep showed up at my door, ready to take me down to IR. I couldn’t believe it!

My chariot awaiteth.

I was wheeled downstairs, moved, and prepped.

For some reason, instead of trying to place a line in my right arm, they decided to try my left arm again, requiring the doctor to perform an angioplasty. They blasted and plowed their way through my clotted vein, finally achieving success after 2 1/2 hours.

Scary looking, but a success!

 

Despite medications and numbing shots, I was very uncomfortable and scared. I must have reactively winced a dozen times.

But it was finally done. No more pokes for the rest of my stay (as long as the PICC line remains functional)!!

Like the Heavens Opened

I slept like a log Friday night, and woke up Saturday morning finally able to eat breakfast for the first time since I had come into the hospital. Pancakes and bacon never tasted so good!

I am thrilled to finally have a PICC line, making it much easier to get my antibiotics and for the nurses to draw my blood twice a day.

Thank you, God for helping me hang onto the last drops of faith and patience I could find, my amazing nurse, my doctors who harassed IR, my hubby/family/CF friends who kept me sane and entertained.

The Blessings Keep Coming

Another bonus of this hospitalization is that from now on, CF patients will be cared for on a particular floor. That means continuity of nursing staff – the nurses will see us much more frequently, building more experience with CF patients, thus creating an all-around better patient experience.

The Nurse Manager even remembered me from a 3-week hospitalization from fall 2012. She gave me this cute little bear for the nurses to sign!

I have already seen and felt the positive changes taking place as a result. Today, I walked 5 laps around the unit – a total of 1,650 steps, and when I got back to my room, Father Jeff was waiting to give me Communion. I am feeling very loved and lucky today!

And by sheer coincidence, a fellow CF patient – a.k.a. a “Cyster” (a word we use to refer to other women with CF) – is in the room right next to me. I recognized her cough and sent a text message to her, asking if she was in the hospital and on this floor.

This is the third time we’ve been hospitalized at the same time, so it was a crazy coincidence!

And, yes, it’s possible to recognize someone by their cough!

Although we’re not allowed to hang out or be near each other due to contact precautions, we can wave to each other and have quick doorway conversations.

Thankfully, we can send text messages to one another!

It’s nice to have someone else in the trenches with me (although I hope she feels better ASAP!!).

Lastly, and most importantly, I am thrilled to notice overall improvement since the week began.

My cough has decreased, I am getting more junk out, I have more energy, and I feel like my lungs can hold more air. I am sure that my doctors will repeat my lung function tests sometime in the next week, so I really won’t know how far I’ve come until then.

Although the week was pretty brutal, I am glad that all of this work is beginning to pay off. I view this hospitalization as an investment – if I want to have a fun summer, I have to pay the cost. It sometimes doesn’t seem fair, but that’s the way my life works.

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2 thoughts on “The Price of a Few Months’ “Life”

  1. Fellow CFer (32, post lung transplant) and new CF Blogger, here… Have your doctors considered placing a port in you that would allow for IV medicine to be administered through it in the hospital and while at home? I had one put in near the top right corner of my chest about six years ago, and it was a godsend. Hope you are feeling back in tip-top shape soon!
    transplanteddad.blogspot.com

    • They haven’t, it’s a point of contention as I want one and they are really conservative due to the risks. I have a history of clotting lines (inside and outside in the vein). They want me to have to need IVs much more than 2-3 times a year to mitigate the risk. We’ll see.

      Thank you for reading and commenting!!

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