Ongoing cough = bronchiectasis

 Say bronk ee ek ta sis.  My constant cough is due to that condition. 

But this fever stuff has also been going on for the entire time I've lived in this apartment. Here's my post from 2016.

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 Monday, January 18, 2016

Where I have been...

It would be fun to say Japan.  Or perhaps Australia.  Or even to some favorite shops here in Black Mountain or Asheville, NC.  Sigh.  I've been to the doctor's office again.

Last Thursday I patiently awaited the medical records of our hospital to be sent from my visit THREE WEEKS prior to my doctor's appointment.  They never arrived.

So my doctor again took blood and got a pee-test.  I'd also had blood drawn by his office the day I went to the emergency room.  He apparently didn't like his own results.  Of course there were more things done to my blood at the hospital.

But for 2 months I've been experiencing extreme tiredness and fevers and chills, and some lung-related chest pains. (I did spend 3 days hospitalized with Pneumonia in early November.)

I'd even been asked by the ER doctor to keep a journal of the fevers and other symptoms.  So I read off the 3 weeks of results to my own doctor last Thursday, and he entered them into his chart.  But he didn't know what I had.  Since twice in that 3 weeks I'd actually felt good, almost normal, he said I'm getting better.

I contradicted him.  I'd just concluded that I was getting worse before I'd get better.

Since I've spent most of my time horizontal, I have no stamina for standing, walking or even sitting.  I haven't done any housework.  There's a pile of bedding on the floor waiting till I have energy to haul it to the laundry across the parking lot from my building. 

I was so grateful last week to have a friend from church volunteer when I asked for a ride to the doctor's office over 20 miles away.  I didn't think I would have the stamina to drive there and back.

I've run out of silverware and dishes because standing over the sink is so overwhelming to me.  As a potter, I've got more kinds of dishes on shelves, so I'll probably never run out of them.  And for some reason (am I a hoarder?) I have a small collection of plastic-ware forks and spoons.  (I've just about used them all up however!)

Today's early morning doctor's visit finally had the ER blood work results.  The doctor said I had negative results from his test for Mono. There was only a small possibility of a Urinary Tract Infection, which I've had no symptoms for, so we're not treating that.

He didn't have the results back yet for the test of Lyme Disease...but will call me if that is positive.  When I asked about the treatment for it, he said it's the same antibiotic which I just took for 10 days...which his Nurse Practitioner prescribed on the day she sent me first for a chest X-ray and then to ER.

I also have had some nausea, and lack of appetite.  Cooking has not been something I felt like doing, so I've been eating pretty light, except when I go pick up a meal and spread it over several meals.

The doctor said I have a "Mysterious Virus." 
I just about jumped on him.  "What do you mean, 'Mysterious Virus?'"

He said, "There are a lot of viruses in a cluster similar to Mono, and it looks like this is one of those.  There are so many they haven't got names, or have been studied yet. Of course we'll see if the Lyme test is positive.  In the meantime, you're doing the right things to get better.  Rest, do as much as you feel like. Let me know if anything suddenly changes. I'll call you with the results of the Lyme test."

So I posted on Facebook that I've got my very own Mysterious Virus.  I even named it after myself. 
"Mysterious Barbara's Virus, MBV." Why not?

Results were negative for Lyme Disease.

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Published again 8/15/21 at 8:43 pm

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I could have written the same today, Aug. 7, 2023. Again this fever comes. Lethargy, shortness of breath when just taking a bag of bread out of the refrigerator, some muscle aches, some shooting headaches, but they disappear quickly, and cough that continues whenever I go in my bedroom. (That doesn't mean I don't cough anywhere I go)

For 4 days I have awakened with chills from a fever. I stagger into bathroom and take 2 tylenol.  Then back in bed and I take my temp. Usually just 100 point something. Yesterday 101.4. That was a surprise. I had had really vivid dreams while experiencing that and not being quite awake. It took an hour to get the temp down to normal. And it stayed down the rest of the day, while I forced myself to eat a little of this or that.

I canceled my going to a women's program that I was really looking forward to attending.

I'm coughing a lot, and have to make myself do the vibrating vest, which I lean back against hopefully for 20 minutes, but I couldn't keep comfortable that long. Then I baby my lungs with a saline nebulizer which is to help pull the mucous out. It does. Productive coughs.

And being 2023, of course I've done a COVID test. Negative. I'll do another one tomorrow. 

I have had my whole life affected for 7 years with this! So major changes are going to happen.

I wake up with chills...when does the fever start each night? Probably by the time I first see light outside and can go back to sleep. So I planned to get up at that point, swaddle myself in whatever warm things I can, and start my day. I couldn't remember why I was supposed to get up, but the chills started with daybreak. Last night I left the window open till my bathroom visit around 4. Closed it then.  No trouble sleeping. Woke with first light, wondered if I had a fever, but stayed with C-PAP on and didn't get up till 7:30...when I wrapped a towel around my shoulders to help me feel warm enough.

Yesterday My friend said, are you going to go to a doctor? Today I really want to.

I wanted to go to the doctor's office with the fever. If I took Tylenol then within an hour, it would be gone, and this continual suffering would be less obvious. I called for an appointment and left a message at 8. At 8:30 I tried calling my Care Coordinator, and left at message.  I had finally pulled out a nice warm shawl to replace the towel, and took my 2 tylenol. I called the nurse next, and she said you need an appointment, (and didn't know why I'd been sent to her) and she sent me to the scheduler. Dr. will be in next town today. Somehow (later addition) I missed that she made my appointment for that next town, and I showed up at the local office. It worked out, because I had a tele-conference visit with the doc, telling him I've had this happen for 6 years (I've since researched it and it was 8 years.)

So when do I have time to live? I said this to the pulmonologist when he asked me to use this vest 30 min. twice a day. Adding another hour of treatments, which may help...so I'll try. But I honestly only do 15 min.

During a great summer thunderstorm, later that day I went to pick up the antibiotics with steriods, which I'll start in the morning. I will follow everything suggested. My worry is that I may outlive the ability of these darn animals that I put in my gut for their effectiveness. I'm pretty confident at this point though.

This is a woman who will not be waking up more and more mornings with fevers, then the nice sweats...which used to come in the night. Should I be grateful for that?

Today's quote:

There would be no society if living together depended upon understanding each other. -Eric Hoffer, philosopher and author (25 Jul 1902-1983)