Where do I go from here?

NOTE: There is a medical photo of an IV that may upset some readers. If thhis makes you uncomfortable, please do not continue.

Wow, where do I begin?

I am at the end of day 12 in the hospital. I knew that it was coming, my doctors have been trying to get me back in here since November because my infections kept flaring up.

First few days…most of which I do not remember

It’s always hard to tell when to pull the trigger and make the decision to come into the hospital and go on IV antibiotics.

Two and a half weeks ago, however, this flareup came on fast and furiously, and it was the Pseudomonas aeruginosa bugs that were in charge this time. These are the big bad bugs that I can no longer treat with oral antibiotics. So I have to go on at least two IV antibiotics for those strains, as well as an additional IV antibiotic to treat my MRSA.

Since my last hospitalization in September, I had been on oral antibiotics for my MRSA almost consistently. And now, everyone else wanted to come out to play.

When I was admitted, my inflammation levels were the worst that I have ever experienced. It freaked out my medical team. 

There is a number that they look at that can measure information, called C Reactive Protein. 

Normal range is 0 to 10. When I was admitted, I was at 156. Twelve days later, it is finally in the 20s. Getting closer.

Typically, after the first few days of antibiotics, I start to show some progress, but my numbers really weren’t going down. So my doctors repeated tests on my bugs, which basically involves me coughing up mucous and then putting it in a petri dish to grow it and see which anabiotics kill it. 

It turned out that one of them was now resistant to one of the medications I had been taking for an entire week. So they had to start a new medication for me, one that I have only had once in the past, but I had it via nebulizer, inhaling it instead of receiving it in my vein.

So I had a new drug added to my cocktail, and stopped the one that wasn’t helping.

Colliston is an old antibiotic that is rarely used these days because of its effects on the kidneys and how hard it is on the body. However, it is the only antibiotic to which one of my bugs will respond. It is a last resort.

My “jetpack” – the unit attached to the wites attached to me, monitoring my heart

 

The good news is that it started to work, the bad news is that it’s affecting my heart. So I had to stop taking a bunch of other medications that can cause the same heart injury, which sucks because they control a lot of the more unpleasant side effects of heavy duty IV antibiotics.

I also came into the hospital with a possible blood infection. I have had three series of double blood cultures and it appears to have subsided thanks to one of the IV antibiotics that also treats my MRSA. There’s a possibility that perhaps I did not have a blood infection and that one of the blood samples was simply contaminated, but they cannot take that chance and not follow protocol to the end.

So here I am…typically I would be close to discharge around The two week mark, but my doctors have shared that this is not going to resolve as quickly and smoothly as my other flareups.

PICC line with double lumen, so I can receive two medications at the same time

I am facing additional time with my PICC line, which makes me nervous because I have had three separate blood clots as a result of picklines over the years. It’s also very uncomfortable and limits a lot of things including the way I sleep, using my arm, etc.

I have also been on oxygen and might not be off of the oxygen when I leave, whenever that is. I am trying to wrap my head around the fact that I might have to go home on 24/7 oxygen. Hopefully it would be temporary, but with CF, you never know what’s going to happen.

In my head, I realize how very very sick I am – how sick I was – and how far I have to go in order for my lung function to increase. But my emotions have been riding a roller coaster that has not stopped since before I was admitted.

Yes, my inflammation numbers are going down. I am feeling a little bit stronger each day, and I actually was able to start walking in the hallways again. But I’m dragging my IV pole, my oxygen tank, wearing a heart telemetry monitor, and taking very small, very calculated steps.

This is not how I imagined progression of cystic fibrosis.

I have felt things that I’ve never felt before. Physical symptoms. Fears. Abject uncertainty.

I am 45 years old and I have cystic fibrosis. According to all of the statistics, I really shouldn’t even be alive. Perhaps that’s what’s making this harder, having beat the odds for so long and feeling confident about that, and now feeling so vulnerable and fragile.

It breaks my heart that my husband has to see me go through this and feel helpless. It hurts that I am more of a patient then a partner at this point in our lives together. I hate that my niece is a nephews have to see me so weak. I hate that my mother cries because she feels guilty for passing on this gene to me. And now that my sisters have had to help bathe me because I could not do so myself.

But on the other hand, I am more grateful for every breath that I do have. I have felt love with my husband that carried me in the most desperate moments I’ve ever experienced. I have also opened up and let my family see me vulnerable and allow them to help me. I have also allowed myself to ask for prayers and positive thoughts online. Are used to be embarrassed and felt like I was throwing a pity party, but I realize that shared experiences are why God put us on the earth together. 

Don’t get me wrong, I am not thankful for cystic fibrosis in any way, shape, or form. But I am thankful to God for every joyful moment.

I am offering my struggle to God as my penance during this Lenten season. I usually don’t talk a lot about my faith, but I know that I am still here for a reason and that God is not done with me yet. I pray for strength, courage, grace, and to still think of others, even when I’m hurting. 

I apologize for the babbling nature of this post, but there’s just so much that I needed to share. I don’t know where this path will take me in the coming days and weeks and months. I have to be patient and take each moment as it happens.

Thank you for spending your time reading my story.

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One thought on “Where do I go from here?

  1. Nancy says:

    Ugh. I am sorry to hear that you are at this place, but hopefully by reaching out to your family and the big, wide internet world, you are making a positive difference in one way or another. Here’s hoping that you have turned a corner and better days are ahead. Keep us posted. My thought are with you.

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