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rbtro

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Aug 2, 2006
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27
Reason
PALS
Country
US
State
Maryland
City
Arnold
Hi all, It has been a while since I have posted. I have dropped in to the lurking mode. Let me say thanks again for mantaining this Website. It has been a Godsend. But on with my sad story.
I turned 60 on the 26th of March. I had a wonderful day. My wife had open house and invited many friends and family. It was really nice to see so many old friends. But it has been downhill ever since.

Last friday, I started having trouble with breathing. I couldn't get into a rythym with the BiPAP. Every time I would inhale I would cough. I used the cough assist but was unable to remove the mucus that was triggering the gag reflex. I called the Dr. and was told to try Mucinex to break it down. This seemed to help some, but I still couldn't stop the cough.

Monday, I called my Primary Care Physician. He called in prescriptions for Levaquin (Antibiotic) and Prometh VC syrup (cough syrup). I took these and now the fun starts. As I went to bed and laid on my side as usual. But now I can't sleep, because I can't breath right. Everytime I inhale I am unable to exhale. It feels like there is a plug over my windpipe. I have the wife give me a cough assist I did this for so long my throat was raw. Still was unable to clear the mucus. Ended up sitting up in the Powerchair all night. Not much sleep, but able to breath with the BiPAP.

Tuesday sitting up was going well all day. Again when I go to bed I am unable to breath laying down. I spend the night sitting in the lift chair. Once again not much sleep. Now I am having difficulty eating and drinking. I talk to the PCP and he suggests I go to the ER and get suctioned. I did this and the RT treated me with a Nebulizer and suction. This was good I could breath again. The xray shows I have a little pneumonia. The wife called the ALS Clinic at Hopkins and was told to follow that advice and if I wanted I to I could come to the Hopkins emergency room and the pulmonolgist would meet me there. I decided to go home, I was given a nebulizer and a suction machine. My eguipment list is growing.On the way home the mucus now watery was causing a rattle in my chest. I got home and tried the cough assist. This did no good. The mucus was too watery to exporate. The RT said I would have to cough this up. I am coughing and coughing nothing is moving. Should I return to the ER or go to Hopkins. A few more coughs and thorough suctioning I am able to get it under control. Decide to stay home. Get in to bed, hoping to get some sleep. Lay on my side as usual. This lasts about 10minutes. Once again, I am coughing on inhallation. I get rolled to my other side this seems better. I can breathe again. Again, this short lived. I begin having trouble with the rythym of the BiPAP. Back up and into the lift chair, not much sleep.

Wednesday, Stay in the chair all day. Nod off on occassion. Get out of the lift chair and into the powerchair for the evening. Decide to give up on trying to lay in the bed and just get into the lift chair. Not much sleep.

No coughing but now have a feeling that I can't inhale. Get out of the lift chair and into the powerchair. Do around of medications and 15 minutes on the nebulizer. Now here I sit at the computer and have this rattle in my chest. I begin to cough and ask for the cough assist. I am able to exporate some mucus. It is milky white to yellow. I return to the computer and attempt finish this post. Sorry for length. I just wanted to tell the story and ask if anyone has had similar problem. Also looking for some guidance on the nebulizer. Well that's it and thanks to all in advance. This really is a great support group.

God Bless,
Rich
 
Rich -

I'm sorry to hear you're feeling under the weather (but glad you had a happy birthday first). It's good you're still able to reach out. Maybe rejoining with the forum will help you feel better mentally, and that may help improve how you feel physically. You must feel exhausted right now. Hang in there.

Liz
 
bad wk for old man

Rich Have you tried coke cola . It helps me and I saw some others was using it. It cuts that flem up pretty good.

Davis 07
 
Use the neubulizer 3 x a day than use the cough assist see now that works good luck I feel for you Pat
 
Rich..My husband Shannon has been in your exact predicament about 4-5 times in the past year..it is tough. You CAN kick this pneumonia and recover....I know you are feeling exhausted and depressed....it will take awhile to get your strength back.
He would go on the Levaquin too, twice he took it and then relapsed a week later and took a second round which seemed to take care of it.
He cannot get used to the Cough Assist and we had big fear because they kept saying youve got to cough it up and he really cant. That is where the nebulizer really seemed to help. (I assume you are using Albuterol in the neb?). Our home health nurse had him do it at least 4 times a day and that really seemed to help...even more if he needed, he could actually do it very two hrs if needed. That helps get the lungs open and some of the stuff I guess gets 'reabsorbed' or something out of the lungs without having to cough up (I am not really explaining that right...all I know is his lungs cleared!)
He is on Bipap all the time, I mean 24 hrs and only 5 minutes off while I change masks. He sleeps in his recliner all the time and doesnt even recline all the way back now because he aspirates saliva while he sleeps if he lays his head back.
Now he uses the nebulizer once a day for maintenance. It took weeks for him to feel better after those bouts..trying to cough is so exhausting.
It was a year ago when we thought it was the end for Shannon as you may be afraid now....tomorrow is our 8th wedding anniverary and we thought our 7th was our last. And, just today Shannon typed out in capital letters "I CANT BELIEVE I MADE IT TO ANOTHER MASTER'S TOURNAMENT!':-D
Sending you best wishes for strength and recovery....please email with any more questions. Take Care, Beth
 
Hang in there Rich! I hope you can get some rest eventually, that for me would be the hardest part. Man this is a crappy disease. Barry
 
Hey Rich. Good to see you back even though you're having a tough time. See you haven't been here since Christmas. You must be Catholic and only show up at Church at Christmas and Easter. LOL. Hope you're feeling better soon. AL.
 
Old Man feeling better

Well let me begin by thanking you all for the support. I have followed Pat's suggestions and appreciate Beth's info. I hope Shannon is feeling well. Al I have not posted, but have been reading often. I am a CEO (Christmas and Easter Only). I hope everyone has a happy Easter.

Thursday, nebulizer 3 times, cough assist and suction after. BiPAP working fine, back in bed sleep normally.

Friday, repeat the same, actually sleep better. Went for a full 5hrs without waking.

Feeling so much better.

God Bless,
Rich
 
sleep

Rich, Glad to hear your getting some sleep now! Barry
 
Glad the nebulizer and cough assist worked, continue doing it the more you use it the looser the mucus will get So glad your sleeping Try xanax at bedtime it works great Pat
 
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