Lookin' for the High

As a runner, there truly isn't anything quiet like the adrenaline high you get after crossing the finish line or achieving a set mileage/time goal. I feel so far removed from that feeling lately.

Last Friday night I found myself in the ER. I was running a fever, having chills, sweating profusely and my joints were very inflamed and painful. While I've experience this situation before, it's usually because of the serum sensitivity and happens with I'm on IV medications. However, this was different because I haven't been on IV's since 12/15/15.

I just feel like a hot mess lately. I feel good for about a week or so, then I'm right back to square one - feeling crapping. I haven't been able to keep a regular workout routine, which affects so much for me. My mood, my energy levels, my diabetes, my lungs, my depression, etc.... In the brief moments of feeling good I do go for walks or a small jog and when I'm feeling icky and painful I try to do at least 15 minutes of yoga. It isn't much but it's something.

Yesterday and today I am desperately missing the high. That runner's high. That feeling of great accomplishment. When the mind and body function as one and you are in awe of just how awesome your body is and how powerful your mind can be when focused.

I know I'll get back to that place. I have to - for my survival and the survival of those around me. Until then I'm holding on to this image.

2015 Fueled by Fine Wine - 

Finish Line!!

~Doodlin'

Serum Sensitivity Follow-Up

In an effort to truly determine if I'm experiencing a serum sensitivity/sickness we had decided after my Penicillin allergy test came back negative to give one of the drugs a trial run while I was "healthy" to help isolate whether my symptoms are directly related to the medication or the infection. The only way to do this was to place an IV and administer a full dose of the medication. In this case it was Ceftazidime.

Wednesday morning, I was up early and on my way to nurse treatment to have an IV line placed. This gives me the biggest anxiety. Generally, it takes multiple attempts or they are unsuccessful and refuse to try again and must bring in a specialty nurse.

Upon check-in I was greeted by a nurse who has treated me in the past. She respects my anxiety, health condition and preferences, which makes a world of difference. She placed me in a quite room and immediately hot packed the arm and hand that showed the most promise. While we let the warmth of the hot packs do their magic I read. Reading helps calm my nerves because I don't think about what lays ahead but rather I become enveloped in the characters of what I'm reading. After about 20 minutes she came back in and prepped me. In one swift poke she was in the vein, drawing back blood and flushing. Success!

After the medication was fully administered I sat for about 2 hours under observation to see if I would have any immediate reactions or an anaphylactic response. I did not. I remained hopeful that I would not react and was prepped to head home.

About an hour after I got home and settled the chills and an ache in my joints began. I knew right away this would be a long night. I took a hot bath to help ease the aches and pains and put on warm pj's. By the time B got home I was in full reaction. Upset stomach, severe joint pain and swelling along with the chills. By 6pm I was in bed trying to sleep it off. I was incredibly thankful this was just one dose and that the symptoms would ease off as the medication made their way through my system and that I didn't have to give another dose thus continuing the cycle.

Needless to say the reaction is not the infection but my body's reaction to the medication. Not what I was hoping for, however, now we know which direction to go in terms of treatment. We, doctors and I, are in collaboration on what that looks like. 

CF can be frustrating. I'm choosing to not let this frustration get under my skin but rather remain as positive as possible and trust that we'll get this figured out. I'm gonna take it one step at a time and rejoice in the small victories like; the IV was placed in one attempt………ONE!!!

~Doodlin'

Serum Sensitivity

Let's recap a bit……

September 19th, I had a PICC line placed to begin yet another round of IV's. My PTSD kick into full gear and I was overwhelmed. Thankfully, the PICC placement was text book smooth. After getting home and administering my first dose of Meropenem I began spiking a fever, vomiting and getting the chills.

I knew it was not the infection causing these new symptoms. I pushed thru the night until the next dose was due. Weird thing is, right before I started the next dose my symptoms started to ease up, which is largely why I felt it was not the infection. So, I got in touch with my doc and we decided to switch meds.

After going into clinic to receive the first dose under observation I was fine. B and I went home thinking all would flow as it should and we'd get thru the next two weeks fairly smoothly. Nope! After administering the second dose the symptoms returned.

Each time this has happened that particular medication has been placed on my "allergy" list, meaning I can't use it. The severe issue is that with these symptoms I also develop low white blood cell counts and/or neutropenia which is dangerous. This also is quickly depleting the pool of medications I can use to fight my infections, that's dangerous for someone who needs them to fight infections that left unchecked will cause severe lung damage and erode my life span.

Funny thing is that this has been happening for a few years now. While we didn't exactly know it when it began we now know we've got to figure out why my body is reacting to the medications this way. In 2011 it happened and then later in early 2013.

In order to get the medications in my system and help subdue the infection, we decided to address the symtopms with anti-nausea meds and a fever reducer. This cocktail worked for the most part until pharmacy called an told us that there is a drug reaction between the IV medication and the anti-nausea medication in where heart issues can occur. At this point, I was beyond frustrated. I now had to go get an EKG done to ensure no long-term damaged was sustained by my heart. With great relief I can tell you it did not.

At that point, I stopped the anti-naseau medication and just suffered thru the last few days of IV's. Needless to say it was a very unpleasant 3 days. The only way I know how to describe it to say that it felt like I was being poisoned.

The CF doctors and I set up a game plan to try to figure out why my body is reacting to some many medications and even ones that are not in the same family.

Game Plan:

#1) Find out if I have developed an allergy to Penicillin. Many of the IV medications are in the Penicillin family.

• This was done 11/13/13 and was negative

#2) Try to isolate the symptoms; are they truly from the medication or is it my bodies reaction to the infection

• This will be done on 12/11/13

#3) If its the medication, figure out what other medications can safely be used to help ease the symptoms (i.e. adding prednisone)

Because the Penicillin testing was negative and I showed no signs of any reaction it has been determined that my reaction to the medications is an immune reaction to either the infection or the medication. It is of a serum sickness and/or sensitivity type reaction. Finding out if I react to the medication when I'm in stable health will allow us to differentiate whether or not my symptoms are because of the infection or because of the medication.

All of this will determine if and what medications I can use in the future. I'm sort of freaking out inside. These medications are vital to my survival.

~Doodlin'