To home IV or not home IV? That is the question.

Hope you have room for all of the supplies!  A lot of the antibiotics need to be refrigerated so make room there too!

I've been doing home IVs for over 15 years now.  When I lived at home my mom was able to help me out with them and I got pretty spoiled.  This was back in the day where you had to pull up all of your saline and heprin syringes from the bottles.  Now they just come predrawn which is a huge timesaver.  It would take close to 20 minutes with the 2 of us doing it.  We would usually draw up for the next day and need about 4 heprins, and 16 salines.  I've been on my own for 7 years now and I would say that it depends on a few things whether I would recommend home IVs or not.

1.  For me, it depends on what antinibiotics I will be on.  Some have to be infused over 2 hours, some are given every 8 hours, some are a push, some cause severe nausea etc.  I will usually stay in the hole for a least a week to get my strength back.  And usually during this week, I am sleeping a lot.  Then I start to get antsy.  For me, it is finding the happy medium of being well enough to continue my meds at home (plus my regular treatments) and be able to get better and not worse.  If I go home too early, I usually wind back in a week.

2.  I have a port and am completely self sufficient.  It's actually annoying to have to deal with home health.  The company I am with insists that I have a nurse come out that night to "show me how to do it."  The first night home is always the most difficult.  You get home after sitting in rush hour traffic cause the hospital's discharge time of 11:00 applies to everyone but you.  You have to go to the pharmacy and fill any oral drugs that are new.  After waiting around there, you have to wait for you infusion delivery.  Then comes the home nurse.  They have to do an assessment even though you just had you temperature, blood pressure, and lungs listened to right before you were discharged.  Then they "show" you how to use the infusion equipment which is a hoot, cause I've been doing it longer than they have.  As I age, I seem to be losing my patience with the home health nurses.  The cool ones are like, "Sign here, here, and here.  Show me how you do it.  Have a great night."  As I have saud before I am pretty self suffficient so I can do my own needle changes, blood draws, and IV pushes.  I have bounced around to different homehealth companies and they are all pretty much the same.  The reason that I stay with Preferred is because their port needles don't have the safety latch on them and lay flat on your skin.  To me this is HUGE.

3.  When I was in school I pushed to home IVs more cause I had a drive to graduate (which I did).  I have never used the Kiplings or other machines that people have already posted about.  I do ask for the Infusion Balls (yes, that's what they call them) but you need to request them because they "cost more money" and can't be used with all medications.  Sometimes they do come in the baby bottles that have a balloon inside.  The med is put into a elastic balloon and the elasticity is what forces the med into your body.  These are great, don't make noise, and can fit into your pocket or purse.  The only drawback on these is that not all meds, especially the imepenem, meripenem, and other meds that need to be mixed right before infusing aren't stable to be put into these convenient balls. 

4.  Some places insist on using a machine for infusing if you have a port but my homehealth does not.  I can use a gravity flow system for my other meds.  The one thing you have to be careful and mindful of is air in the line.  But priming the line is the same as you would do for a pump.  You also don't have a beeping machine to tell you when the med is done.  I usually have to set my phone alarm otherwise I will fall asleep.  I also deny them sending me an IV pole (one cause they will try and send you one every freakin time you go home on IVs) but I don't use one.  I just have a push pin in a few key areas of my house (one in the bathroom, by my bed, and by my couch.)  And if I want to change areas I just carry the bad above my head until I get to my next destination.

5.  Some of the meds make me super nauseous...to the point where I need to alternate zofran and phenergan every 6 hours.  The home health will not give you IV anti nausea cause it's "dangerous if you don't know what you're doing."  I signed a release with my home health (and I do feel confident using it) so I am able to get the Phenergan at home. 

6.  Last but not least, I have chronic pleurisy pain issues.  So if my pain can't be controlled by pills, then I will stay in the hospital.

I hope this helps if anyone is contemplating going on home IVs.

An Emotional Triumph

The Narwhal Triple Bypass Swim Challenge:

3 workouts, 10,000 yards, 1 day!

AND I DID IT!!!!

Let me break it down for those of you who might not be familiar with swimming.

10,000 yards is 4.5 times as much as my normal daily swim.
10,000 yards is 400 laps.
10,000 yards is equal to 6 swimming miles.

My lungs felt great.  Although I did wake up the next morning feeling stiff as a board, but now I have an excuse to go get a massage.  ☻

Even though a handful of people from the MAC team completed this challenge, I overcame more than just swimming 10,000 yards.  Part of me wasn't sure I could do it.  Others didn't think I could or should do it.  I'm so glad that I gave it a go and ended up succeeding.  Granted all I did that day was literally sleep, swim, and eat...in that order...three times that day. 


The Workout

Stage 1
1000 warm up
4 x 250
10 x 100
10 x 50

Stage 2
800
12 x 50
600
6 x 100
400
20 x 25's kick

(At this point, I knew I had a 150 left from my 800 to make up from the warmup.  I also thought that we only did 2 x 600 when we actually did 3!  So, I stayed and "made up" the 600 hundred that I thought I was behind on.  So in Stage 2, I actually swam 4100 yards.  Yea, I'm an idiot.)

Stage 3
10 x 100
2 x 200
6 x 100
8 x 50

(Or something close to this.  My brain was fried and all the workouts were merging together in my mind!)

GO TEAM NARWHALS!

I love it when...

... I'm filling out patient history forms at a new doctor's office and the form only leaves two lines for current medications.

... people behind me in the check out line say, "Wow, you should really stop smoking with a cough like that."

... it costs $6,000 a day to be hospitalized, and your insurance has terminated you since you "make too much money."

... people ask if I'm just getting over a cold.

... my friends stick up for me and ask people to not smoke or kick up dust because "they" have allergies.

... I laugh so hard I go into a coughing fit.  And it happens often since I love to laugh!

... my friends refer to the hospital as "The Slammer."

... I tell someone I have CF and they actually know what it is.  And no it's not a religion.

... they hold local CF seminars that CFers can't attend.

... Team Zoomina reaches their fundraising goal! 

... doctors ask me, "Which parent gave you CF?" or "How long have you had CF?"   I swear the next time I get that question my reply will be, "I just got

back from this cruise and I think that's when I picked it up."

... med students visit me in the hospital just to look at my fingers and toes.

... cafepress.com comes out with new CF shirts.

... my best friend thought that I had just had my wisdom teeth removed the first time she met me, when in fact, I just had steroid cheeks.

... my friends and family forgive me for my roid rage.

... my nurses let me access my own port.  (It's the little things!)

... fat kids on airplanes laugh at you for wearing a mask, until you tell them it's cause you have Ebola.

Why The Sexy Pretzel?

I thought the title of my blog might need some explanation.  As CFers already know, we are the seeping salt licks in the animal kingdom.  Especially after a hot day, my body can be crystallized by NaCl.  After being involved with my loving boyfriend he decided to give me this nickname, "Sexy Pretzel!" to which I have no problem with; I love pretzels. 

Welcome!

I've spent the majority of my day reading blogs of other CFers and they have been such an inspiration, so I thought I would start a blog devoted to my CF life in hopes of returning the favor to others.  And maybe this blog can bring some peace in my life, and help me to grow emotionally with issues that I have been ignoring for many years.  Cheers to tears, and loving life! 

Here is a little bit about myself that you might find interesting.

I am 26 years old, living vivaciously with Cystic Fibrosis.  I am a scientist and look at my disease through the eyes of a doctor and not necessarily as a patient.  I consider myself to be outspoken, especially when it comes to my condition, and take an active role in daily regimens of treatment.  I hope to inspire others, especially those younger than me with CF, to make it understood that the world is still at your fingertips, and that normalcy is only what you make it to be.