marilyn-cellucci
Forum Replies Created
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Dear Jan,
I am hoarse most of the time now. Can’t talk too much, as it seems to exacerbate the hoarseness. I never knew hoarseness was a symptom until I read it somewhere else. I thought it was just weird me.
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Dear Sully,
Is “dark crystal castle with lights” like a doll house model or something like that?
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Hi Malcolm,
I bought one from O2totes from Amazon, lavender color. It is perfect, none of all of the extra compartments, etc.
Have a good day.
Kindly,
Marilyn Cellucci -
Dear Pete,
Why on occasion do you bump up the prednisone, stress, illness, ? Does your doctor go along with this? I am just curious. I have been on prednisone 7.5 mg for a year, I think. Thank you, Corgilover1
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Dear Ron,
Why did you switch from Esbriet to Ofev?
Marilyn
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You have a great sense of humor, Gweeneeth. God bless you.
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God bless you, Lawrence.
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My PFT’s have improved while on prednisone. I go in December for more PFTs. I’ll let you know now that my dose has been lowered.
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Dear Catherine,
Did you have a blood test called hypersensitivity pneumonitis profile done? Did parts of it come positive? I’m just curious because mine have just come negative and the pulmonologist originally thought that maybe that is what I have.
Kindly,
Marilyn Cellucci -
Dear Donald,
Have you found that the side effects of Ofev diminish over time? I have recently started on it and cramping is bad, no diarrhea so far which surprises me since I have the cramping.
Thank you.
Marilyn Cellucci
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Hi Karen,
I am just starting Ofev. I was sure I would be turned down by Medicare/drug program and then have to appeal. I was pleasantly surprised. My insurance company approved it right away! I must have a great Medicare plan. I am so fortunate. I just pay a $30 co-pay each month.
Another drug that I am on though, my insurance turned it down. It is also very expensive. I applied to BI and now get it for free.
Kindly,
Marilyn
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What is lung volume breathing, please?
Marilyn
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Hi Phil,
I was first diagnosed in late 2009. I had been stable until last year.
Kindly,
Marilyn
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Dear Christie,
I think your Mom will do just fine, she is in the hands of very competent doctors. I will pray for her.
Kindly,
Marilyn
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Dear Christie,
I have had two fundoplication surgery, a year apart, back in 2017 and 2018. I had them not because of GERD, (I don’t think I had GERD at the time), but rather because I had a giant paraesophageal hernia, an 8cm hole and the first surgery took 8 hours, and the second, nine hours, but the surgeon took three half hour breaks during the nine hour one. I had to eat very soft foods for a short time afterwards, but wasn’t a big deal. Pain after the surgery was bad, but I was given plenty of pain killers. Pain killers constipate you, so you have to take lots of laxatives. I still have the same amount of GERD, which I had before, minimal. So the fundo didn’t help one way or the other. Keeping your stools liquid for a while was the only thing I remember. I don’t know where you live, I live in Philly. Doing a straight fundo should be easier than my operation. But if she is having lots of problems, then perhaps she should get a second opinion on the surgery. Also, most importantly, ask the surgeon how many of this type of surgery has he done in the past year or so. Where I initially was going to go to one place, the surgeon did about 50 of my type of surgery in a year. So I had to go to another city to have the surgery (surgeon did 200 per year).
I probably didn’t help you too much. But please, consider a second opinion.
Kindly,
Marilyn
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Sue,
I have been on it for some time now. I have had no problems with it at all. I think we all react to the drugs a little different sometimes.
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Charlene and David,
Why wait until the FVC is 80. Why aren’t the drugs started when your lung function is better?
Marilyn
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Regina,
I don’t have all of the classic symptoms of IPF, many odd ones. My pulmonologist thought that doing a biopsy would not be worth it since the biopsy would be atypical and not show anything useful. It is a mute point for me since I am being treated as though I have IPF anyway.
Marilyn
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Hi Mark,
I had started on a 40mg tapering dose. At the 40mg and 30mg dose, I had no dry, tacky cough, no post nasal drip, and no phlegm in my throat, it was wonderful. At 20mg my cough returned, although not bad and only a few times a day. Now that I am on 10mg (will be there for at least a year, unless I have an exacerbation), the post nasal drip, the cough, and the phlegm has returned but still not as bad as before the pred, but very annoying. I think we all have a different reaction to a tapering dose. I do not feel as ravenous as when I was on the 40mg dose. But I still worry about long term effects, esp. osteoporosis.
And yes, prednisone is a wonder drug, but with this comes the dark side of it also.
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Hi Jerry,
I am on a tapering dose of prednisone. When I was on 40mg, I had no dry, tacky cough, no post-nasal drip and no thick mucous in my throat. Everything was still fine when I dropped to 30mg. But when I dropped to 20mg, I started coughing again, but nowhere near as bad as it used to be, but I still coughed. My post-nasal drip came back and the phlegm in my throat, not as with the cough, it wasn’t nearly as bad as pre pred.
Marilyn
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Hi,
I have severe GI problems in addition to my IPF. Starting at about last Christmas, I started losing weight, unintended. I lost over 40 pounds in less than six months. My GI doctor thought I had a malignancy and was tested with everything. No malignancy was found. So he is dumfounded as to why I am losing weight. I mentioned to him my lung disease and he mentioned it to my lung doc. She said I would be losing weight at the end of my life when I couldn’t even have the energy to eat, not at the beginning of my journey. I still think it is because of the lung problem. I have been put on high dose steroids, and of course, I am ravenous and the weight is holding right now. But this is only masking the problem. I would assume you have the weight loss because of the disease. I don’t agree with my pulmonologist. I know she is correct concerning the weight loss at the end, but I am odd anyway so I guess I am having it now.
Kindly,
Marilyn Cellucci
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Allen,
Where did you have the stem cell procedure done in Pittsburgh? Were you satisfied with the results and the procedure itself?
Thanks very much.
Marilyn
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Hi Anne,
I was originally diagnosed in 2009, but the pulmonologist said it was mild and would just watch it. Actually, she wasn’t sure of the original doctor’s diagnosis either. I guess the doctors don’t even know why the fibrosis can remain stable for years. If they knew, the disease could be stopped before too much damage was done. I hope some scientists are researching it.
Kindly,
Marilyn
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Hi Charlene,
Not a question about clubbing, but something Ron had said. He has had IPF for 13 years with very slow progression. So the disease can remain stable for quite some time. Why are we told when diagnosed, that we only have a couple of years left (unless the patient was really badly off when first diagnosed.
Many thanks,
Marilyn