paula

When I applied last time, I knew in less than 10 minutes. Once I get the information from the accountant then I will call them and then once that is approved I will contact my doctor to have him do a new script. I believe we will be bumping me up to 150mg. I sent you a note regarding Boston.

Nice to know Patsy.
I purchased some pineapple juice today, sure hope it helps. Anyone have any idea as to how much one should drink? I might have missed that piece of information.

Hi Charlene

I am still waiting on starting the OFEV again; Did not have any bad reactions last time after my break now I just have to wait to apply for the grant.

Still waiting for Boston. Evidently there was a mix up at my doctor down heres office, I think I got it straighten out and I also spoke to Boston transplant team yesterday. So I wait.…[Read more]

Hmmm pineapple. Just might have to give it a try. Thanks for the suggestion

Hi Bill
Sorry to read about having to sell off the stuff that has been an important part of your life. While there are things that I have had to give up, the latest is bringing in the groceries. Even with my oxygen on my levels drop to the low 70s and my fingers turn blue.

I will not lie and say I do not have my moments when I get down. I try…[Read more]

Hi Charlene

Yes I too deal with the fatigue. Amazing you can be sitting there one moment fine and dandy and then all the sudden you are falling asleep, yawning to no end (trying to reassure the person your talking to that they really are not boring you)

For me the weather is the worse in causing the fatigue. Feeling trapped indoors. Lately I…[Read more]

I am very sorry to hear of your father passing. I was diagnosed with IPF 2/16.

Your comments of your fathers last five months were very helpful. Up until last summer I volunteered with Hospice and they are a wonderful group but as you said, they are not there 24/7.

I have not done any volunteering since we moved closer to the kids this past…[Read more]

I can only think of when I discussed this with the hospice people I work with. This was before I went on oxygen

Many knew about the diagnosis of the IPF but like myself did not look at it as something really bad. I looked good, was not having too much trouble breathing. But then I had an episode where the treating pulmonary doctor put it in…[Read more]

Morning Charlene

Count me in as well.

@Barbara Schwenzer Welcome aboard. Glad you have found your way here. You will find a ton of support here and no question is silly or dumb. Many of us have either experienced what you may encounter, or know someone who has and we (I say this with with great assurance) are more than willing to help with…[Read more]

I hate the phlegm. That and the bloody noses.

Sometimes I have a dry cough, but other times I start coughing for no apparent reason and I hack up a major fur ball. Reminds me of the glue we used to have in school. Forgot what it was called, came in a tin bottle with a brush. It would be clear and when it dried you could actually roll it into a…[Read more]

That is awesome Robin

Before my doctor sent me to Boston for a second opinion did a whole bunch of blood work. The tests came back with some interesting stuff and he was giddy as heck thinking that while he still felt I had IPF, what was causing it was something that would allow me to live a lot longer than previously thought. One of the tests…[Read more]

Good question David. Esbriet was working great for me, or at least it seemed to be. Then my body decided it no longer liked it and make me allergic to it. Then I went on the OFEV. Kind of hard to say how well its doing. Went through a very stressful period when I first started taking it (buying/selling a house). Minor side affect and then about 6…[Read more]

Hi Charlene

Thanks for the reply. First off. I did get stuff with the OFEV for the bathroom issues, Sometimes it worked sometimes it did not. And when it did, when it wore off, in some ways it was better. Major gas and stomach cramps.

Boston will not be making the decision to put me back on it. It will be my guy down here. He will be putting me…[Read more]

Hi Ray

Glad to hear that your wife is feeling a little better. I take the store version of tylenol every night to help with the stiffness I have in my knees and where ever else my body decides wants to be a pain.

Very happy to hear that you have been feeling well enough to make a few dinners and eat them. Awesome news.

I never did have issues…[Read more]

Morning Ray
I am sorry that the meds are off the table for you. Maybe a page can be started for just being able to check in with one another to see how life is going besides the dealings with the IPF.

Thank you for the concern you have for me, I really appreciate it and if I have not said it before, you and Charlene are always close to mind.…[Read more]

Hi Charlene

Saw the doctor today. He is taking me off the OFEV for at least 30 days. The ever increasing days of loose stools with no relief from any kind of medication for it prompted him to give me a break.

We talked about the bluing of my toes and hands and he said it is from low levels of oxygen and asked me to check my levels when I see…[Read more]

Morning Charlene

No I have not heard back from the doctor yet. See him on Wed. I have a list of stuff to talk to him about, the latest is the light headness feeling I get. Horrible.

Raining here right now, just got back from my grandson’s hockey game, going up the stairs to the seats, yes with my oxygen I was so light headed. Took me a few…[Read more]

Hi Charlene,

I kind of knew that you being in Canada did not celebrate Thanksgiving, but figured I would still wish that it was a good day for you.

I have not heard anything back from the doctor about the bluing. It may be like when I did poorly on the PFT and he simply addressed it when I saw him. I will be seeing him next Wednesday morning. I…[Read more]

@Susan W Lyon. Sorry to hear about your experience with Esbriet. I am not sure that IPF makes you more at risk for allergic reactions as I seem to be having issues with a lot of stuff. 5 years ago I found out (after back surgery) that I was allergic to titanium. They had to take the rod out. Lucky me I fell into the 4% of people who have issues…[Read more]