From the Blog

Viral Gastroenteritis and CF

I went to the hospital yesterday. Diagnosed with viral gastroenteritis. This photo was from leaving across the bridge from TGH on a beautiful autumn night.

Okay, pick yourself up off the ground. Here’s what happened.

I woke up with a wicked headache. Massive. 10 out of 10. Got through my treatments, but wasn’t feeling well enough to eat breakfast, which I attributed to the headache. Not too long after I got to my desk, I started getting heat waves, cold waves, started sweating, and had to sit very still to avoid ruining my keyboard with any sudden surge from my stomach.

I went back downstairs and got under the blanket on the couch. Then I threw it off and turned on the fan. Back and forth. No fever, though: 97.9, completely normal for me. I then realized I’d been to the bathroom about 6 times since dinner the previous day, so I sent Sue an e-mail about taking some anti-nausea meds we had laying around. They wanted me to come in for a GI x-ray to be sure I wasn’t blocked up, given my extreme nausea.

She called in an Rx for an anti-nausea med. Beautiful went to get it and I proceeded to pass out from trying to not puke. I e-mailed my clients for the day and told them I was out for the day. I also told her about my tender neck/throat and she said she’d let the doctor’s see my e-mail as further symptoms.

At clinic

Then my temp spiked to 100.9 and Sue’s plan changed to be seen by the doctors instead of going to x-ray. I hadn’t lost any considerable weight (2lbs) since clinic, had 98% O2 sat, but a 125 pulse and 100 fever. On our way to my room, we had a nice surprise seeing Kelli Stevens, the wife of another CFer at clinic. She’s on the cardiac transplant team, so she was there because our clinic is for both cardiac and lung transplants. He had his lung transplant over Christmas last year, so when we brought gifts to ICU, we had to leave them with the nurse.

Anyway, the first thing the doctor said as he looked in my mouth was that it was a wicked case of thrush. I’d explained in an e-mail earlier to Sue that my entire trachea has been sore to the touch since Friday (going on 5 days) and the doctor said that’s why. So, for those of you on Advair, gargle and spit. Dont drink, swish, and swallow – that’s how you get thrush all the way down your tract.

He said I just looked really dry and I felt really weak and helpless. He ordered 2L fluid immediately and stay on a plain, boring diet until the nausea and runs went away. Well, any time you want to get back home, things take forever and the fluids proceeded to take nearly 2 1/2 hours to go in. At least the clinic staff are epic compared to the main hospital staff. They brought me apple juice and a blanket and showed Beautiful the clinic food pantry.

We rolled out around 6pm and headed home to be a lazy bum all night.

Temperature control, please

Since I’d been in clinic, I needed to take a shower. I was shivering coming home and going upstairs, so I got the space heater out of the bathroom closet and cranked it on 1500W high and waited a few moments. Time to get out my long-sleeves and sweatpants. I ate some applesauce, drank Gatorade, and watched the Moonshiners marathon before the season premiere, which I fell asleep as the new episode started.

It was a complete wasted/wash of a day.

Summary

  • viral gastroenteritis caused “bathroom issues”
  • “bathroom issues” caused dehydration
  • dehydration caused
    • headaches
    • nausea
    • dizzyness
  • not swishing and spitting after Advair caused very bad case of thrush

Comments

  1. Jesse,
    Ouch! Like you said….what a way to spend a day! Thank goodness it was over pretty quick but what a trial! I am doing fine. Just got back from 8 days in France/Paris. Caught a cold the last 3 days but big doses of Zicam seemed to subdue it. We can do just about anything! Keep trucking!

    Mark

    • Quite a trip! I’ve yet to cross the big pond and don’t think I should while I am still so prone to blockages. Did you stay with friends or in hostels?

      It’s amazing what you can fend off with a healthy BMI, eh?

      • Stephanie Mann says

        Jesse,
        I am sure the BMI helps. Did treatments on the plane/airports as usual but Cayston is so fast it was much easier to do. Your NY/Niagra falls trip is something I really want to do soon. Really helps to set goals like that and do them. Have been very fortunate not to get the thrush. I basically do everthing you do except for the vest and Advair. Soon you will get on one of the Vertex drugs and then your lungs will really sing. The Vertex trial I was on was a great experience even though I had the placebo. Also, unfortunately the Vertex drug for the one delta 508 doesn’t work as well. I guess at 55 I can wait a bit longer……
        Get well soon, stay well, and keep inspiring us!! God Bless you and Beautiful.
        Mark

  2. pleasepassthesalt says

    Hi Jesse. Glad you’re feeling better. I’ve had up and downs with thrush recently and wanted to bring up the fact that, like bacteria in your lungs, your mouth/throat can be colonized with itโ€”meaning if you are on Cayston/TOBI/other antibiotics that are killing all the bacteria in your mouth, the thrush goes crazy with no other normal mouth microbes to compete with. It’s not just the advair thing. It helps me to use mouthwash religiously after TOBI, but it’s an uphill battle. Hope you can keep it under control.

    • Thanks, Amanda. He shook his head with every med I said could be doing it, but I tend to agree with you on this one. Maybe if I didn’t have any fungus, Cayston wouldn’t be so nasty inside, but I think it is spreading now since my tongue has had a carpet despite nystatin, diflucan, and losenges.

      I had NO idea it could cause the tenderness to the outside touch on my neck, though. I thought something was broken or strained!

      • pleasepassthesalt says

        Wow! Those are intense symptoms. I usually just notice my throat is a little sore and then I’ll see the white patches. Always a pretty fast onset whenever it flares up. Still working on the magical routine for after my TOBI nebs to banish it. When I have success, I’ll share the secret.

        • Yes, please do. My tongue carpet is about to go shag-style. Going to hit it all 3 ways at once.

          • pleasepassthesalt says

            Ok. I’ve successfully gone more than two months without thrush and during that two months, I’ve been on oral antibiotics, done a course of TOBI and am almost finished with my off month, so that’s the gamut of my typical experiences. In the 6 months or so prior, I was getting flare-ups of thrush in between TOBI and when I wasn’t on any oral antibiotics. Here’s what I’ve been doing:
            1) When on TOBI or oral antibiotics, I religiously rinse my sinuses twice a day after my TOBI dose with a NeilMed bottle and the NeilMed saline packets with one drop of tea tree oil added (antifungal). Not advocating the tea tree oil unless you want to use it. It kind of burns if you put more than a drop and I’m sure your doctor will say not to use it. There’s also another product I used to use called “Alkalol” but I can’t find it in any stores around here. It’s a minty liquid and I would add a half a teaspoon or so to the sinus rinse and it really helped keep sinus infections under control.
            2) I gargle with what’s leftover in the NeilMed bottle after the sinus rinse. There’s always a little saline left over for me.
            3) Then I use Biotene mouthwash twice a day. It has some enzymes in it that are supposed to restore your normal saliva, which is the body’s natural defense against pathogens in the mouth. My mouth is always dry and I’m not able to taste very well when I get a thrush flareup. They make a flavor of Biotene for dry mouth, which is what I used. Biotene also has xylitol in it, which has antibacterial and antifungal properties.
            4) Disinfect your toothbrush in between uses. I filled a cup with isopropyl alcohol and just plop it in there between uses. Make sure you rinse it really well, because you shouldn’t consume isopropyl alcohol.
            5) Maybe change your toothpaste. I’ve been using the Arm and Hammer for sensitive gums, but before I was using some colgate one with Triclosan. Triclosan is an antibiotic/antibacterial that is good at killing all the good bacteria in your mouth, which you need if you want to make sure the candida doesn’t have any room to grow.
            This is what I’ve been doing and so far, I’ve interrupted the cycle. Hopefully I will be able to keep it up. I also always ask for a preventative course of fluconazole when I take oral antibiotics and I take them simultaneously all the while also taking a probiotic (I take Pearls, but usually only when I’m on antibiotics). Maybe some of this routine can help you, too.
            Amanda

          • Wow, that’s quite a routine!

            As one who can’t remember to do a lozenge after meals, I’d epic fail your routine, but I’d like to try the mouthwash, for sure. You’re dead on about tasting with a flare-up.

  3. What a horrible day!! Praying that your three-pronged attack knocks it out and you feel better really soon.

  4. Try taking a probiotic with each meal .. acidophilus 6billion ..keep it in the fridge… it helps replace the good bacteria that are killed .. yeast & bacteria are always in balance , the good bacteria keeps the yeast in check.. when the good bacteria diminishes the yeast flourishes as an opportunistic infection.

    Darryl S.

  5. Megan Murray says

    Ugh! This just sounds like an awful day! I hope you’re starting to feel better. And I hate thrush. I get it way too often, and I’m not even on advair. Thinking of you!

SOCIAL LINKS

    Warning: Invalid argument supplied for foreach() in /Users/benmeredith/Local Sites/cffatboy/app/public/wp-content/plugins/genesis-mobile-menu/includes/global/GMM_Public.php on line 222