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'

Neutropenia Update

You know one thing that I am not great about is updating you all on my medical prognosis once I've been diagnosed. It's so easy to complain or write about how frustrated I am during a crisis, in fact its really helpful on many levels. I get the frustration out instead of holding it in until it boils over in anger or something self-destructive.

I do need to learn to go back to analyze the emotions when I'm well and in a good place mentally against those emotions during the crisis. I think it would be helpful to "see" what trigger points I have. What my tolerances are. Address the fears associated with that diagnosis or at least begin to work thru the fears now that I have the energy and am no longer in survival mode.

I mean, HELLO!, its the whole point of this blog; to turn pain into purpose or something inspirational.

Back in February after 2 weeks of IV's I developed Neutropenia. You can read the original post HERE. However, Neutropenia can become very serious if not addressed quickly. Thank the heavens I have great folks tending to me, as soon as the test results came back from a blood draw, they were directing me to the ER or Urgent Care whichever I could get my butt to fastest.

I am happy to report that within 48-72 hours of my trip to Urgent Care along with the removal of my PICC line I was beginning to feel more like myself. I continued weekly blood draws to ensure that my white blood cell count was continuing to rise. I am now rejuvenating those precious white blood cells at a healthy regular rate.

I'm fairly confident that I know my body. I know when something just isn't right and so does my doctor because I plow up their emails, pagers, and I park my tush in their exam rooms frequently until we figure it out. But sometimes I forget that medicine isn't the fix all. It too can have serious if not devastating results

Life is good. I'm slowly regaining my strength. I've been walking the dogs again and incorporating running. It's amazing how quickly we fall out of shape and how difficult it is to get back into a workout routine. I guess that's my biggest obstacle and it's really just a mind game.

My personal goal is to run a 10k this summer. So, I've got to stop the mind games and just lace up.

~Doodlin'

Nutria or Neutropenia?!

It's been nearly three weeks of IV's and no real sign of improvement. In fact, at my follow-up appointment last Tuesday my PFT's had dropped slightly, that, coupled with having low energy levels led to the decision of going one more week of IV's. Fine. Ok. Lets get this down.

Come Wednesday I was feeling even worse. Fevers with bouts of extreme sweating. Like soaking a t-shirt just sitting down along with my reoccurring joint pain this time concentrated in the ankles. After contacting my fabulous CF Team, a rush blood draw followed by a trip to urgent care, it was discovered that I have Neutropenia.

Sort of sounds like a rodent, Oregon has a Nutria. Cute Beaver like things! 

But, truly Neutropenia is pretty serious. It's believed that my onset of Neutropenia is from the IV meds. Therefore, we stopped those immediately and the PICC was ordered to be pulled, since PICC's have a high blood infection rate. The main issue with Neutropenia is that it suppresses your immune system because of the extremely low white blood cell counts. This leaves the patient very vulnerable to bacterial and fungal infections. Just what I need. Where's the cute Nutria? 

I tell you I'm not a simple case. Just when we think things might be smoothing out we hit a large Nutria.

On the upside, I can shower. Oh, yes. A shower. It was like the fountain of youth pouring down on my body. Taking a bath with your left arm wrapped-to-the-nines in plastic wrap raised as far in the air as I could muster was not doing it. 

Meanwhile, I'm in lock down mode to ward off infection. Doing blood work tomorrow to see if any white blood cells have rejuvinated and resting.

So, next time you hear Neutropenia don't mistake it for a beaver-like rodent called the Nutria!!

~Doodlin'