Hospitalized for exacerbation
Posted , 8 users are following.
Hi,
Once again I am taking my experience and sharing it here because this is where I get the best answers from fellow/members.
I was hospitalized last night for an acute exacerbation because my symptoms have continued to worsen. I am more sob and my lungs seem to ache, and I am slowed down. I can get around fine but it is slower and I have to rest. They did not see anything on X-ray but gave me iv antibiotics and prednisone. Still taking the prednisone. I do not feel any better but at least I know I did what I thought was best. I know I do not have an infection but also that I was cared for when I was scared. My pulse ox is between 95-97, all other vitals fine.
I just flew back from taking care of my parents for 5 weeks. I keep thinking of Jude who said you can't push yourself. I felt great before I left, no symptoms. Then after the plane I felt worse......this time too. Dr does not comment on the flying. I think a combo of that and pushing. But when I pushed, I did rest a lot. I have turned the corner to some new and scary place. My lungs seem sore and I just don't have the strength I had.
I have not exercised per se because I was busy enough. Now that I am home (alone) I am concerned about anything that will make me feel more energy. Does the exercise help? Is it essential?
Thanks so much. I am going to ask about pulmonary rehab soon. If they won't cover it I just have to do what I can.
I
0 likes, 14 replies
jude65855 maryterese
Posted
Yes, exercise WILL help with energy levels, I can vouch for that, and I believe it IS essential to manage the condition: not running a marathon or climbing mountains, but at the very least walking every day plus stretching exercises and ideally, the specific breathing exercises and techniques you would learn in rehab.
Are you in the US? Some US contributors to this form have said that rehab is expensive, sometmes too expensive to afford, which seems ridiculous to me because it can lead to you managing the condition for longer than otherwise and cut down on hospitalisations. Maybe "they" don't want you to live longer???
At the very least, check out the Related Information column to the right of these pages and take a look at Pulmonary Rehabilitation, and also elsewhere in the net for specific exercises.
I'm going to try & describe the simplest one - bear with me, wd be much easier to demonstrate! Take a deep breath in and then out to empty your lungs as much as possible, take another deep one and breath out through the mouth iwith pursed lips in a puffing motion as hard as you can and as long as you can until your lungs empty, like a kid imitating a steam train. I can do 40 of those now, twice a day, and if I don't do it for a couple of days I really notice the difference, ditto if I don't do my walking or other exercises.
My lung function % hasn't deteriorated from 70% since I was diagnosed 3 years ago: hang in there and stop pushing yourself, it really doesn't help. I don't know about flying because I don't do it, but other contributors will know more than I do
maryterese jude65855
Posted
I also agree about the pulmonary rehab. It is very expensive. Perhaps they don't want you to get better. A terrible thought, for sure.
Thanks so much for the breathing exercises. That is very helpful. Also the exercise tips.
I will find out my pfts in a couple of weeks. By portable anyway. Only test once a year!
Thanks again!
Nanny1086 maryterese
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maryterese
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jude65855 maryterese
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You just improved my evening! All the best to you too
maryterese jude65855
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jude65855 maryterese
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maryterese jude65855
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MarJij65 maryterese
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maryterese MarJij65
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The pool classes sound great! I will check that out. There are days now that I dont feel i can manage much, and it is very hard to adjust. It just came on like gangbusters. Today I had energy and did a lot, but also rested. The fatigue is brutal - had to turn down a work project the other day when I was very fatigued. Now I wish I had not???
I wonder if they cover home heath services when you get to the point that you cannot do house chores. I am ahead of myself here, but I felt that way two days ago. I am so grateful and happy whne i have a good day now. My best to you! Stay in touch.
jude65855 maryterese
Posted
I don't see why you couldn't qualify for help at home now, then you could save your energy on more interesting things than housework. I find the dust and grot gets out of control if I'm going through one of my tired phases and then that aggravates my lungs and I get even tireder.
You will get used to managing it, it's early days yet, hang in there and monitor yourself so you don't get too tired. I've learnt not to commit to anything that could be tiring without warning people I might not make it if I'm having a bad day: most people are understanding but they can forget bc it's not their health condition. A fancy walking stick is a good reminder, both to you to slow down adn to others that you're not always 100%. In fact I"ve found I can even dance longer if I have a stick to lean on and I do the 70's hippy style of not moving my feet much. I can't dance all night as I used to but sometimes I can get close to it: my friends are used to me stopping for a rest, doing some breathing exercises in the corner and then resuming dancing.
maryterese jude65855
Posted
I won't qualify for any services (like cleaning) unless I am home bound. But you are right about saving my energy for more enjoyable pursuits. I find if I have a good day that I want to get as much done in the house as possible. But I do rest.
You have been enormously helpful. 😊
jude65855 maryterese
Posted
I should've added that I didn't have these energy levels when I was first diagnosed and I reckon the improvement came about from a combination of a few things: rehab, cortisone inhaler and the fact that I stopped taking statins for so-called "high" cholesterol. I'll bet a fair proportion of us are in the age group that is prescribed these routinely & they can drastically affect energy levels to the point of almost total inertia.
I'm really glad if I've helped!
maryterese jude65855
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I don't take statins. Will hope for rehab down the road....Cortisone - I am not sure yet! I am glad that you have positive things in your life.
I was in Sydney, Canberra and Byron Bay when I was in Australia. Where are you again?