@sandra-seabrooks-bush-connor
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Sandra Seabrooks Bush Connor replied to the topic Symptoms of Laying Flat with Pulmonary Fibrosis. in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 years, 9 months ago
Charlene, I use Asmanex. I hardly ever cough and it has definitely improved my SOB.
I hope the block under your knees helps to make you more comfortable.
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Sandra Seabrooks Bush Connor replied to the topic Symptoms of Laying Flat with Pulmonary Fibrosis. in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 years, 9 months ago
I can only lay flat for a short time, however my bed is not completely flat. We have an adjustable one and it’s raised up a bit at the head. But I go to my back when one of my nostrils plugs, which happens a lot when I go to bed. It helps to clear it up especially when I use the Ayr saline, but it doesn’t always help. It just magically clears…[Read more]
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Sandra Seabrooks Bush Connor posted an update 4 years, 10 months ago
Replying to Ken. I too love puzzles, but found it tedious to turn over all the pieces, so I now do puzzles on my iPad! If you’re interested, just download the free app called Jigsaw Puzzle and get a free one every day. You can also buy them very, very inexpensively too. Take pictures and make them into puzzles, etc. try it, you may like it.…[Read more]
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Sandra Seabrooks Bush Connor replied to the topic PF Changes: From Extrovert to Introvert in the forum PF Changes: From Extrovert to Introvert 4 years, 10 months ago
I’ve always been an outgoing person. First to say hello, all that. But now that I’m settled into this disease, I cherish the quiet. It’s so opposite of my former way, yet I like it. I still welcome visitors, but don’t want them to stay too long. I don’t think it’s a bad thing because I enjoy it! So I wholeheartedly stand and agree with you Charlotte.
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Sandra Seabrooks Bush Connor posted a new activity comment 4 years, 11 months ago
That’s all you have to do with it, just store in fridge. I’m not sleeping with the higher prednisone and feel very weak today. I’m going to take the 20 until Tuesday, then drop to 15 for a week, then go back to my original 15/10. I was handling that rather well for over two months.
And everyone calls me Sandy! LOL
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Sandra Seabrooks Bush Connor posted an update 4 years, 12 months ago
For Charlene. Can’t find right way to respond back to your comment. Don’t know about the pollen count although the trees look full of new leaves.
Yes, for me it loosens the phlegm so I can cough it up some. But even when I cough it up, there’s always more! You must keep the albuterol in the refrigerator and wash the device you inhale to washe…[Read more]-
Hi Sandra,
No problem, I’ve found your response and hope you’re feeling a bit better 🙂
I didn’t know that about the albuterol. The person who dropped off the medications for my nebulizer really didn’t share many details, so I’m thinking of calling to ask for more clarification on what I need to do to store the meds, load them, etc. He basically…[Read more]
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That’s all you have to do with it, just store in fridge. I’m not sleeping with the higher prednisone and feel very weak today. I’m going to take the 20 until Tuesday, then drop to 15 for a week, then go back to my original 15/10. I was handling that rather well for over two months.
And everyone calls me Sandy! LOL
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Sandra Seabrooks Bush Connor replied to the topic Inhaler Use for Pulmonary Fibrosis in the forum Diagnosis Information and General Questions 4 years, 12 months ago
Am very short of breath. I think it’s because of the high pollen now. Hopefully it will calm down for me. I find the nebulizer very helpful. Mine is mixed with Lbuterol and bromide. They used this in the hospital when I was in and I liked it better than just albuterol. We have to mix the two together. I usually have one every morning around…[Read more]
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Sandra Seabrooks Bush Connor replied to the topic Inhaler Use for Pulmonary Fibrosis in the forum Diagnosis Information and General Questions 5 years ago
Charlene, The infusions were recommended by my previous Pulmonologist because my immunoglobulin numbers were so low. This Friday I have my sixth session. It takes about four hours. I feel somewhat stronger because of them and I’ve made it through the winter without getting sick.
My little machine is referred to as a nebulizer. It’s like th…[Read more]
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Sandra Seabrooks Bush Connor replied to the topic Inhaler Use for Pulmonary Fibrosis in the forum Diagnosis Information and General Questions 5 years ago
I use an inhaler called BEVESPI. I also have an inhaler machine and use Albuterol with bromide mixed together. Also at the same time I am getting infusions to build my immune system. For the last week or so, I am having trouble with congestion so I finally took 40mgs of prednisone today as that is about the only thing that helps me with co…[Read more]
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Sandra Seabrooks Bush Connor replied to the topic Dealing with Phlegm. in the forum Join the Discussion: Welcome to all PF/IPF Patients 5 years, 1 month ago
Denny, I changed cannulas to a shorter, fatter sort of stubby one and the runny nose stopped by about 90%! And I find when I am active, I need to keep my mouth closed because if I don’t, the nose will start to run every time. I have to keep reminding myself to shut my mouth. LOL. Hope this helps you too.
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Sandra Seabrooks Bush Connor posted an update 5 years, 1 month ago
Answering Charlene. I was in rehab for 31 day to strengthen me after 12 days in the hospital after an episode and also fractures in my back. When I was released from rehab, they gave me two types of exercises with weighs for upper and lower body. That was over a year ago and I’m still doing them. It has really helped keep my body s…[Read more]
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Sandra Seabrooks Bush Connor replied to the topic Advice for Newly Diagnosed Patients in the forum Diagnosis Information and General Questions 5 years, 1 month ago
After my diagnosis and not really knowing very much about IPF, I looked to the internet. The first thing I read was 3-5 years lifespan is the norm. That scared the heck out of me. So first of all, don’t even think about that because we are all different and many, many have lived way beyond that. I’m in my third year and feel better about it al…[Read more]
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gil and
Sandra Seabrooks Bush Connor are now friends 5 years, 1 month ago
Hi @sandra-seabrooks-bush-connor, great to hear from you as always!
This is a great tip/suggestion that I’m sure Ken will appreciate. Thanks for sharing 🙂
Charlene.