Sandra Seabrooks Bush Connor
Forum Replies Created
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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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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 when I get up. I don’t cough much now that I use an inhaler, so that’s not a bother.
As for the MRI, they put this block under my knees that raises them up and this helps to keep my back flat and very comfortable. They just automatically put it there.
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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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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 10 am.
Happy Easter!
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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 the pipe you are given in the hospital where they come around about four times a day/night. Similar to that, but not that big, long pipe.
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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 congestion. I have been on 15/10 dosage for the last three months and thought I was doing pretty good, but a letdown for me right now. I was using the inhaler Asmanex along with BEVESPI, but my ankles swelled. I’m just so confused if I’m helping IPF or hurting it.
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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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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 all than the first year I was diagnosed. Back then, I panicked at every little thing that felt different. I made it very upsetting for my husband and family. My doctor prescribed Xanax and that helped calm me down. I have had no need for it in a long, long time because I am use to this disease. I do my exercises each day and if I am having a bad day, I skip them. But, I do go back to them the next day. Keeping your body strong is key. Keeping a positive attitude, getting dressed each day, and walking helps a lot toward feeling better. And lastly, I f you’re on prednisone, stay far away from chocolate! LOL ?
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I feel kind of stupid because I felt myself getting weaker, but never tied it to not getting enough oxygen! Who thinks of that?? I chalked it up to getting older and this is how it must feel. Had I been younger… oh well. When I was diagnosed I had no idea what it even was. The Pulmonologist in the hospital explained about the lungs, but never about the life span being shortened. Had to read that online. I was depressed for a while, but I have always been a positive person and it didn’t last too long, a few months perhaps. I have always felt it be me rather than anyone else in my family.
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I started with a continual cough, sometimes with spitting up mucus, around 2003. I went to a few doctors over the years, but they could find nothing wrong. I sang in a 140 person choir of all retirees here and had to finally drop out in 2014 because I could no longer sing because of running out of breath. I stopped doing everything; golfing, playing card games with the girls and volunteering for the local hospital. I even stopped cooking! Then one day I could no longer get my breath and my husband called 911 on October 30 2015.
I went to Gainesville to see about the transplant and I didn’t qualify. The doctor said if they opened me up, my bones would fall apart. Secretly I was glad because I was 75 at the time and really didn’t want to go through a major surgery.
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Charlene, I do not know anyone with this disease nor did I even know what it was or what it meant to my life. My first Pulmonologist showed me a ct of my lungs saying I had honeycombing, broken glass??? I had no idea what he was talking about. I even asked him if he was concerned. He said of course he was and that was it. Everything I have learned about IPF is from the wonderful groups on Facebook and pulmonaryfibrosisnews.com and through google and YouTube. Thank God for these aids, and now I have IPF friends all over the world! Oh, I reside in Florida, in a beautiful retirement community. I’ll be 77 in April.