Worn heart

heart of clay

I look for a broken heart on the beach. I nearly miss it, but here it is. I nearly miss it because it is so large. A clay heart, broken all the way through.

Here is a stealthie with my foot for scale.

Shoe selfie for scale, at the base of the broken clay heart.

Part of the cliff has recently collapsed. The heart must have broken during the slide. It will wash away in pieces now. Here is the cliff and you can see the scar of the slide. And the broken heart.

broken clay heart in the wall of the cliff, with the scar of a slide collapse

I tried walking the beach without oxygen. I did pick up rocks. I took a pulse oximeter with me. Carrying maybe three pounds of rocks, my oxygen saturations drop. Not well yet. 87 or below is not ok. It feels awful and exhausting too. Like being at a high altitude and not used to it. A pulse of 130 also does not feel great, normal being 70-100.

Pulse oximeter, with pulse 130 and oxygen saturation 87.

Thank goodness for the oxygen and the tanks that let me be mobile. Blessings and take care of your heart.

Oxygen testing

“If oxygen might help with chronic fatigue, as it has helped you,” a friend asks, “how do I get on oxygen?”

Complicated answer.

First of all, one of the things that is not clear, is what recovery looks like. I think I’ve had low grade chronic fatigue for the last 7 years compared to my “normal”. Now, will I get off oxygen? I don’t know. I am hoping for September but it may be that 7 years of low grade hypoxia means I have lung damage and no, I won’t get totally off oxygen.

They have apparently recently made the guidelines for oxygen more stringent. I sort of missed that update, even though I just recertified in Advanced Cardiac Life Support. You now have to have an oxygen saturation that goes to 87% or below. It used to be 88.

Now, you can test this at home with a pulse oximeter. In 2005 after the influenza, I held my saturations but my heart rate would go up to 135. Which means that I walked across the room very very slowly because a heart rate of 135 sustained does not feel good at all. Normal is 70-100 beats per minute. You can measure pulse with just a second hand, number of beats in a minute. For oxygen saturation, you need the pulse ox and it will measure both heart rate and oxygen saturation.

So: measure pulse and saturation at rest first. Write them down.
Then walk. I usually send patients up and down the hall three times then sit them down and watch the pulse ox. In some, the heart rate jumps up. If it’s over 100 and they are getting over pneumonia, I don’t want them back at work until it is staying under 100. Or if sitting they are at a pulse of 60 and then walking it’s 95, well, I think that person needs to convalesce for a while yet. They can test at home.

As the heart rate returns to the baseline, the oxygen level will often start to drop. Does it drop to 87? Describe the test to the doctor and make sure the respiratory technician does it that way and also they should do pulmonary function tests. Mine were not normal.

Now, what if the oxygen doesn’t drop to 87? We are not done yet. What does the person do for work or do they have a toddler? If they have a toddler do the same test carrying the toddler: they sit down, exhausted and grey and this time the oxygen level drops below 87. If they do not have a toddler, do the test with two bags of groceries. Or four bricks.

When I did the formal test, the respiratory therapist said, “Let’s have you put your things down so you don’t have to carry so much.”

“I’d rather not.” I said, “I want to be able to walk on the beach, so I need the two small oxygen tanks, my bird book, camera, binoculars and something to eat.”

“Oh, ok,” she said.

So I did the test with two full tanks of oxygen, small ones, and my bird book and etc. I dropped like a rock loaded. I think I would have dropped not loaded but perhaps not as definitively. Still hurts to carry anything, even one tank of oxygen.

We are making a mistake medically when we test people without having them carry the groceries, the toddler, the oxygen tank. My father’s concentrator is pre 2013. It weighs nearly 30 pounds. Now they make ones that weight 5 pounds. Huge massive difference.

Good luck.

you know you are hypoxic when

Darn it. I went from two months of no hiking or beach walking to too fast too much… oops. Injured left tibialis anterior. Oxygen AND a boot. Dang blang curses… guess I have to behave slightly better.

Another outfit not appropriate for work: on the morning before the boot…. I am holding out my hand to be kissed. That area on my lower left shin is red… and later in the day I got in with ortho and got the boot.

flowered dress with long beads and above the elbow white gloves, hey, put that oxygen back on!

get real girl

While I organize, I find things. Most of the barbies apparently got blown up with firecrackers one time when I was not home. Both of my children were involved with this. “Not the babies,” says my daughter. “Also not the Get Real Girl, since she is yours.”

Well, the Get Real Girl is the camping one, with backpack, GPS, camping stove, frying pan and fried eggs. Apparently she is not a vegan. She acquired the diving equipment from a barbie set and was all ready to go in the water (no wet suit though) when one of the barbie babies landed in her lap. Gosh, now what! As you can see, they seem to be bonding even though Get Real is not going diving today. I will have to see if there is another Action Figure around the house that could hold the baby while Get Real dives….

We had another Get Real Girl, one who plays basketball. I have found a lower leg and foot. I suspect that she met her fate with the barbies, poor thing. Maybe my kids will give me another Get Real Girl for Christmas…..

outfits inappropriate for work 2

When pneumonia nearly takes me out, I want COLOR. I think I managed it with this. The skirt is not only silly, but a little short for me to wear to work….

survived

Pneumonia is weird. I look good after I manage to not die from it. I start going outside a little more and I run in to people. “You look good,” they say.

“I nearly died of pneumonia.” I say.

“….but you LOOK good,” they say, looking confused.

It was weirdest in 2012 and 2014 when I had strep A and sepsis symptoms and couldn’t get any doctor in town to believe me. The out of town Pulmonolgist and Psychiatrist did. The ENT didn’t really care. The Neurologist said that it was not myasthenia gravis or one of those weird muscle diseases. How do you KNOW, I asked. “Your lungs are getting better and they wouldn’t be if it was one of those.” “Oh. So this is just really bad strep A in my muscles.” “Yes.” “And I will get better?” “I think so, eventually.” “But we don’t know and don’t know when.” “Correct.” How non-reassuring. The Infectious Disease doctor said we don’t know how to treat you but you can TRY taking one 250mg penicillin tablet daily. Didn’t work. I got nauseated pretty soon. In contrast to when I have pneumonia and can take 500mg four times a day. It’s ridiculous. The asthma/allergy testing was all negative and after the 2014 round my lungs healed.

I hope they do this time too.

I wonder if people will have the same, “Hey, you look really good,” as much with me being oxygen. Except I have the mask over the oxygen tubing (talk about tangled!!) so they can’t see my face anyhow.

“Hey, how are you?” someone says.

I hold up the oxygen tubing.

“OH.” they say.

“Okay,” I say.

Okay.

Dark

May gives me time to go dark. My mother died May 15, 2000, right by Mother’s Day. Her birthday is May 31, right by Memorial Day.

I wrote this poem when I was not sure I would survive this round of pneumonia. I would like to see grandchildren. So far so good. It got a little dark, though. Sometimes it does that.

When I sit down to write a poem, I don’t know where it is going. I sit down with a question. The poem is the answer. Sometimes the poem is where I want to be emotionally. Usually I am not there yet.

it is almost as if each poem were a prayer.

_________

Hello loneliness

Here I am again
give me a hug
it’s been a while

I’ve been so happy
I feel so loved

he has to go on a trip
to care for family

meanwhile
I am so sick
my heart hurts most of the time

it is tiring
it is tiresome

I may get better
or not

hello loneliness
hello illness
hello fraility
hello death

pull up a chair

and I’ll make tea

Yard Art

There is a fabulous garden in Portland, Oregon decorated with bowling balls.

i have decided to decorate with oxygen tanks.

if anyone has any oxygen paraphernalia, I want it, please.

This art installation is titled “Tethered”. Or possibly “Chained.”

you know you are hypoxic when

…..I keep thinking of new ways to nearly strangle myself. I keep thinking that I have hung up the oxygen tubing on every possible thing I could hang it up on. But no, this was a new one. At least with this one I did not lock my car keys in the car. And even if I did, I can take the nasal cannula off. There is that moment of panic: AUGH I AM TRAPPED, but I am not really.

Today’s blog is especially for B who is not trapped.

Have a wonderful Saturday.