Karen Larson Gonsler
Forum Replies Created
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Hi Charlene,
I was diagnosed with PF in February 2017. I have been on prednisone ever since.First I was on just prednisone then a combo of prednisone and Cell Cept. I had a bad reaction from the Cell Cept so stopped taking it after 6 mos. I started prednisone at 40 mg daily and dropped to 20 in the first 6 months. After dropping the Cell Cept they upped it to 40mg for a while and then gradually got me to 20mg. They tried twice to get me to 15mg but both times I coughed so much they took me back up to 20 mg. I’ve had 3 exacerbations and Whete they take me up to 60 mg and then gradually back down to 20mg. I’m in the last stages of one now and currently takes my 25. The prednisone is the only thing that helps. Now the side effects. .Originally I gained 80 lbs in the first 1 1/2 years. I wanted to eat everything. I had just lost over 100 pounds on Weight watchers a few months before being diagnosed. My biggest fear in taking the steroid was that I would gain it all back. Well I almost did. I am now down to with in 19 pounds of my pre prednisone weight and it’s been a huge battle. I don’t sleep well. I have bruises everywhere and my skin is like crepe paper.
About a year ago I started taking the Wei Institute Chinese Herbs and I’m doing much better now. Sorry this is so long, but so is the journey. -
I know exactly how you feel. Everyone walk away from me as if I’m going to contaminate them. It’s something I have struggled with too. I’m finally realizing it’s ok. I’m doing this for me. I wonder if we should right on the mask itself that we’re just protecting ourselves& not contagious. ?
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Charlene, thank you so much for the tip on wearing the cannula backwards. This is fantastic. It holds it in place and keeps my hands off it. I just need to get used to it. Thanks again. Your topics are always so helpful. This disease is no fun, but if we face it together and help each other deal with our problems it makes each day A bit easier. I’m a fighter and thankful for every breath.
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I am on oxygen 24/7. I use a home concentrator, an eclipse 5 & bottles of O2. I change mine every week or 2. My supplier will give me as many as I want. I change each one as they get dirty quickly. I’m constantly playing with it as I can’t seem to find one that fits me right. The best for me is the Salter Lab super soft. The nose pieces are either too long too short or too far apart. I’m adjusting them constantly to stay in place.
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I also cough a lot while laughing. I wish I knew how to deal with this. I love to laugh and it’s an uplifting feeling to do so. If anyone out there knows a solution let us know.
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Charlene, my pulmonologist told me to keep my feet elevated as much as possible. He wants me to watch for redness or extreme swelling that doesn’t go down when elevated and get back with him if it doesn’t subside in a few days. Of course he mentioned “salt” intake which I assured him I’m always careful with. He did say to try light compression socks which I bought and they do help. Stay tuned. Let me know how you’re doing.
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I have PF and I have this going on right now. It’s happened before but usually goes away after a day or two. This time it’s lasting longer. It’s been more than two weeks now. Mainly in my right ankle, but also present less severely in the left ankle. It’s always better in the morning but soon gets swollen after I’m up and about. Sending a message to my pulmonologist tomorrow to see what I should do. He also has always checked my ankles when I’m at an appointment but it has never been s problem when I’m there.
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I love the song Great are you a Lord by Sons and Daughters. Here are a few of the lyrics:
You give life, You are love
You bring light to the darkness
You give hope, You restore
Every heart that is broken
Great are You, Lord
It’s Your breath in our lungs
So we pour out our praise
We pour out our praise
It’s Your breath in our lungs
So we pour out our praise to You onlyThank you so much for all your articles Charlene.
You’re an inspiration to us all.