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New and undiagnosed
Just spent 10 days in hospital. Never had a lung problem but did have GERD briefly. Suddenly couldn't breathe. No air! Blacked out. In hospital received 100% oxygen. Slowly weaned and sent home. Got a "maybe" diagnosis of Interstitial lung disease. Im on no oxygen. Drs said I didnt need it. At rest 02 is 93%. Getting up out of bed and 02 dips 88, 85 %. Drs seem unconcerned. I'm scared! Am I chained to my bed for life? Are my 02 sats ok to go that low as long as they come up?
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I'm hoping your "long weekend" is going well. Today was my rest day - literally all I did was clean up a few patio pots, take a few garden photos and mess with the irrigation system. I think I overdid it for a few days, and my body is telling me to rest. Tomorrow we plan a trip to the apple orchard with our little grands and their parents - we love our mini-adventures.
Here are a couple of pics from the yard today. We have a tiny pond with a copper scuplture. The monarch butterflies are on their annual journey to Mexico, and stop her to rest a few days on the sunflowers.
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3 ReactionsOh Sue how beautiful! I'm so glad your enjoying your weekend!
But yes please rest. I know how you feel! My 16 year old granddaughter and I got out and did the shopping. I shopped the smaller stores, she did the bigger stores. I went to the drug store for some new make up, vitamins and a jug of water. Came home, put it all away (I'm still moving slower) but oh my back and my legs were hurting like never before. Took tylenol, but it didnt touch it. Sats stayed up pretty good but even tho 94-97 at rest, still 90 and 91 on first movement and then rises. Dips again, when I first sit. Yesterday was the first time i saw an 89 creep in after i sat down from being "active". Only checked twice yesterday but just watched to see what's "normal" right now. I dont understand. No breathlessness, no wheezing, not blue, but sats of 89 90 and 91?
Hi again Sue. Sunday evening. Day was definitely different. My sats were good. However, I noticed still, my heart rate was up but getting worse. Standing making a salad. Felt my chest racing. Put on the oximeter and my heart rate was 140. It was also fluttering around today and I was not myself. A lot of lower back pain on one side close to the thigh. Did some digging on my new bp med amlodipine. I went on a site and a lot of people wrote of their experiences with this drug. Most said it started great. And as time progressed and it got into their systems things got worse. I always had anxiety but not like this. My ativan hasnt helped like it usually does. I read over 100 accounts of people who have the same symptoms as me, one is frequent night urination. I rarely go at night till now. So I'm wondering if the high heart rate which is getting higher with no extra output is from the amlodipine.
Just a letter from a person feeling the same as I am.
Oh dear, Yvonne, you are in danger of "falling down the rabbit hole" into your anxiety again.
For everyone with any health condition, there are good and bad, better and worse days.
Look at what you accomplished last week!
- up out of bed and doing
- stopped messing with the pulse/oximeter all day
- went to the doctor and got a good report
- took a walk outdoors
- had a visit with your son & grandson
- went shopping with your granddaughter, then put everything away
Did you think a week ago that you could have done all of that? Of course you were tired yesterday! And your back hurt from doing stuff you haven't done for a month or more. But then, you "old brain" got in your way! You needed to think "I did a lot after being inactive for quite a while. My body is tired & needs to adjust. I need to get out a book, a glass of water or cup of tea, and relax."
Instead you fell into the old habit - reading "bad stuff" on the internet, getting more and more anxious, using that pulse/ox over and over, worrying...
Today is a new day - will you try using your "new brain" again?
Put away the pulse oximeter. If you are not blue or gasping, just chug along - slow is better than stop.
Focus on CAN DO.
Stop looking for and reading "bad stuff" on the internet. Instead of "over a hundred people had a problem..." think - "wow, millions of people take this drug safely. If I am really worried about it I'll call Tuesday and ask the doctor." (PS My husband took about 3 months to adjust to it, has now taken it safely for years.)
If your back hurts try this little exercise: lie down on the bed, bend your knees, & "hug them" towards your chest. Hold for 10, release, do it again a couple times.
Will you let me know how you are doing today?
Hugs!
Sue
Sue
Back in the hospital again. Crashed Monday morning. Same as before. I'm praying hard. On 100% oxygen. If I need anymore they will intubate.
Praying and sending hugs.
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1 ReactionHello Yvonne, I am wondering if you had a chest xray or CT in the hospital to look at your lungs?
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.
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.