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.

Random Thoughts on Living with Cystic Fibrosis

I dream of feeling free, to engage myself with all that I see.

I dream of taking steps that lead further than my own front yard.

I dream of laughing without choking, and singing or dancing without coughing.

I dream of waking up each morning and bounding out of bed, and just taking off, somewhere, anywhere.

I still remember how it used to be when I could dance without gasping for air or my heart feeling like it was going to explode… times when my heart raced out of excitement and joy versus out of desperation to support my lungs with the oxygen they need.

It wasn’t too long ago that I had bigger accomplishments each day than simply walking up the stairs or taking a shower.

I no longer sing made-up songs about the cats or the weather or anything else that tickles my fancy, because I can’t spare the oxygen.  

I no longer dance when I hear my favorite songs, because that, too, requires my very precious oxygen. 

Instead, I shake my hands and shoulders with as much energy as I can afford to give to them.
I cannot laugh easily anymore. It robs me of my breath.

I work hard to strengthen my muscles so that they can take on some of the effort when I’m doing something strenuous like folding laundry or walking up the stairs or taking a shower.

I have to monitor my oxygen levels when I eat, because even a partially full stomach can make it hard for me to breathe.

Why has God taken my ability to dance, sing or laugh?

Today I am having a hard time seeing the glass as half-full. We, as humans, have the gift of such pleasures, and I feel robbed.

College and Cystic Fibrosis: Who/ What/ When/ How/ Why to Tell People about your CF

I came across some amazing news recently – nearly half of all CF patients are older than 18.

Courtesy of the Cystic Fibrosis Foundation

That means the patient population is growing up!! How amazing is that? It means so many things, and for some of us, it means:

No matter where you are in your self-identity journey, it’s never easy to know when to “come out” with your CF. And now that you’re going to college, you wonder, who do I tell? Who should I tell? Who do I need to tell? Who needs to know, really? It’s nobody’s business, right?

New Series: For Parents with Kids with Cystic Fibrosis

I frequent several online communities for people with Cystic Fibrosis and their caregivers, and I sometimes see the same questions asked by parents of young CF patients – how do I get my kid to eat? To comply with treatments? To feel “normal” when he/she’s the only “sick kid” in school?

I thought that I would harness my life experiences (I was a kid with CF once, too!), draw upon my natural propensity for creative solutions, and consult the “child within” who has helped me develop the perspective I’ve dubbed as seeing through “pink-colored glasses”.

Christmas 1972, one month after my 1st birthday, and days before I was diagnosed.

I plan to write a series of posts geared towards helping parents help their kids cope with living with CF.

Some ideas I’m working on…

• Kids, food, and gaining weight
• Complying with treatments and medications
• Surviving a hospital stay
• Dealing with the stigma of being “THE sick kid in school”
• Managing everyday life with CF always hanging around
• CF and Self-esteem

I hope to share some ideas that might make living with CF a little bit easier for both your child(ren) and your family. I am not a health professional in any way, and you should always consult you/your child’s doctor about making any changes to their current regimen, but I have 44 years of experience living with CF and hope that some of my experiences can help you, your child, and your family navigate the muddier waters outside the medical stuff.

Stay tuned!

Growing Older with Cystic Fibrosis – Two Sides of the Coin

Sometimes, life with Cystic Fibrosis makes no sense. You can go years without needing to go into the hospital or requiring IV antibiotics, and then suddenly need to do so five times a year. One day, you can have a relatively manageable lung function, and a week later lose half of it with a single infection flare-up.

I’ve seen each of those scenarios play out often enough to not trust CF one bit.

You see, we can do everything right – perform hours of airway clearance a day (my doctor wants me to do six hours when I have an active infection), inhale medications morning, noon and night, take dozens of medications and supplements, eat high calorie meals to replace lost calories spent simply breathing, see our (many) doctors regularly, gand o into the hospital for maintenance and acute flare-ups – and most us still aren’t going to live a “normal” or “typical” life span.