New and undiagnosed

Hi Sue! Well what I thought was healing, wasnt. On Sept 20 my bp went very low and pulse undetectable by paramedics. I was freezing and restless as drs rushed to get 02 on me and get tubes and wires in me. My kidney function was down to 18% and things were shutting down. I was intubated and sent to a hospital where specialists are. I was on full life support upon arrival with a central line in my neck.
On the 24th it was extubated and it was hell. I underwent so many tests. A bronchoscopy, an Echo, Halter monitor looked normal. Ct had ground glass opiates but inconclusive. Days later I was sent to my home hospital. Put on heavy doses of antibiotics, the latest being amoxi-clav.
But I think we put the puzzle together. During my first stay I had aspiration pneumonia. But I was taken off antibiotics and sent home too soon. While trying to recover at home, the pneumonia came back and I also went septic. I was discharged from hospital Sunday after a lengthy course of antibiotics which I still take for 5 more days. I dont know how to make sure the pneumonia bug is dead this time but I'm praying! So I've had this since Aug 25. The books say after 30 days a person is probably going to be ok. Still lots of rest and recovery.

Well, my friend, that was an adventure you could have done without, wasn't it? At least they now know what was happening. I have been wondering and wondering!
Rest & recover now - just remember to move too - it will help keep the pneumonia stay away. Do you have some home nurse visits scheduled to monitor your lung sounds as you recover?

I will be checking in on you - and may have some suggestions about working to keep pneumonia away - after you have a week or so to recuperate. I am a lousy lung person, so lots of experience trying to keep them working!

Hugs!
Sue

No there's no nurse to check my lung sounds. I'd been to my own doctor Sept 18 and he said things sounded so clear. Less than 48 hours later I'm fighting for my life. One minute things appear ok, then suddenly they're not. Looking forward to following up with you!

Hi Sue! Lungs are sure a slow heal! I think the pneumonia is gone, IF that was indeed the problem. The bronchoscopy showed nothing. I know because of previous uncontrolled GERD I aspirated in the night several times on stomach fluid that were like battery acid as I'd wake up choking. I'd walk the living room coughing and actually bringing up this acid. I could still hear it rattling after I thought I'd coughed it up.
My doctor said he doesnt think I aspirated as aspiration usually happens to older people or stroke patients...that doesnt sound right to me! I think aspiration is possible in anyone.
I can now make my bed without losing my breath. My 02 sats are usually between 94 and 96. I can breathe deeper. Dr says keep taking it easy and rest. Shouldnt I be moving? Anyone that's been through this is welcome to reply too!

Welcome back! I have been wondering how you are. GERD surely can cause aspiration pneumonia if it is severe enough, that's why it's so important to manage it.

Sounds like you are on the mend, but pneumonia sure can take a long time to get over. When your doctor says "take it easy and rest" I'm pretty sure he doesn't mean "don't move" - I think he means "don't go climbing ladders or washing windows." Mild exercise like walking and stretching is good - it helps keep the blood flowing, challenges your breathing a little and keeps muscles from shrinking even more.

When I was rehabbing from Pseudomonas pneumonia, I began by moving 5-6 minutes at a time - make the bed, put in one load of clothes, make a sandwich. Then sit down for a while. Next hour, repeat. After a few days I would up it to 10 minutes at a time, and so on. It took months before I could work or walk for a whole hour! Or do all the laundry in one day. Now I can do mild work for 3-4 hours with just little rest stops. More strenuous work like pulling weeds about 1 - 1 1/2 hours, then a 30 minute or so break. And when my body says "Stop!" I do.

So remember take it slow. Just because you can make the bed today doesn't mean you can vacuum or scrub tomorrow!

Do you have someone to help with cleaning and laundry?
Sue

Yes my husband helps a great deal. My diet has totally changed as I'm overweight so no sugar, white flour or sweeteners. Now I follow the Mediterranean plan with one cheat at Thanksgiving. Lots of fresh whole food. My breathing is easier and I dont have the big jump in heart rate I did before, like 140 pulse rate just making salad. But that was the night before i ended up on life support and i knew it felt wrong. It's been hard putting that scenario behind me. I hear a bell or a sound and it sounds like my monitor beeping my sats are dropping. I dont want to work at the hospital anymore, it's been traumatic. But for today I'm going to enjoy the day and be happy in what I can do. Baby steps and no I wont be vacuuming today! A light walk and some stretching and a book with tea. Cant go outside as we are still in wildfire season and theres air quality advisories out. I'd love some rain! ❤

Helpful spouses are a blessing! When I was ill mine was terrific. On days when I overdo I can count on him to fix supper.
We jumped from 80 degrees on Tuesday to an inch of snow this morning, but we still have a "no burn" warning because of the drought. I hope to get out and harvest my seeds and pull the leeks tomorrow.

Hello Sue! I wanted to check in. So I've been moving a little more every day but my legs still feel like mush. And although at rest my sats are 96, movement of any kind still brings them down to 90.
I also have dyspnea now so I feel really depressed. O2 could be at 96 but I still cant breathe. So I sit and that's not good either. I'm at a loss.

Hi Yvonne - Thanks for checking in, and sorry your recovery is very slow. I think you need to ask your doctor (forcefully - be your own advocate!) for Respiratory Therapy. The RT will work with you on some breathing exercises to help improve both the sats & shortness of breath. Many of the exercises may seem silly, but trust me, repeated 3 times a day for a few weeks, they work.

Also, after my Mom had pneumonia, the respiratory therapist had us get her an firm old-fashioned chair (think of the "wing back" chairs) and a footstool, so when she was sitting her lungs could expand. If you sit on a recliner, easy chair or soft sofa, you tend to lean forward or slouch on your spine, squeezing your lungs. I just today replaced my big puffy oversized recliner with a much smaller one, where my feet land firmly on the floor, and my back is firmly against the back, because I realized I was slouching in the big chair. (Thank goodness for Estate Sales - got a very nice chair under $50.)

I hope you can report some improvement soon!

Sue

This last session was a nightmare! Our local hospital didnt know what to do. So I was intubated, and sent to another hospital 2 hrs away where the specialists are. I was on full life support when I arrived. I've had ct tests, heart tests, kidney ultrasounds and a bronchoscopy. Nothing concrete is showing except this ground glass thing. I'm back in my home hospital now and the 2 litres of oxygen I was on they took away. My sats are 89 and the doctor said walk walk walk. With sats of 89? They took my commode away so I have to go across the room to the bathroom with sats of 89? No one ....is listening. The night before I crashed I was making salad. Heart rate went over 140. Hours later I'm in an ambulance again. I cant do this again.