Thanks Charlene. I think of you often as well. I know your very busy and I hope all is going well for you. Enjoy your trip. I am so jealous.

Robert Obrien ( @bobo )

I was put on the the list the 20th of Aug. (I had my first appointment in April of this year) I was recently bumped from 3 lpm to 8 and it appears that might be bumped up again.  I would call the person you speak with in the team (my contact person is Jill) about how your getting worse to see if you can bump up your… Read more

@Roger Mills, I had no side affects with Esbriet. Well for the first 4 – 5 months, then I developed an allergy to it. Then they put me on OFEV. Within 3 months I got diarrhea. Bad. They took me off for a few months to give my body a rest. Then started me back. After a few months the diarrhea came back.

I am now off of OFEV because I made… Read more

@Patricia Williams. Last year I dealt with the diarrhea for 11 weeks straight. Horrible (did not lose one ounce stupid fat fairy). I could not get under control. So my doctor told me to go off of it for a few months (at the time I was on 100 2 times a day) to let my body reset.

This past Feb I restarted the 100 2 times a day and have learned… Read more

Hi Robert. I am at MGH as well. Have you been put on the list yet? I am almost done with all of the appointments and with any luck, hopefully I will know by the end of July or mid Aug. I will actually be there 3 times next week.

Charlene, I sent you an email this morning regarding Ray.

Hi @ Malcolm Mann. My eating habits started changing when I was on Esbriet. I am right now on 100 mg OFEV 2 times a day going over to the 150 two times a day to try and stabilize the progression of the IPF while I am in the process of trying to get on the lung transplant list.

More than changing my appetite, I find there are foods that I… Read more

@Marianne, I was switched from Esbriet to OFEV because I developed an allergy to it. I really have not had any issue with the sun while being on either one. I actually think that the Esbriet worked better but I could be wrong.

My doctor just increased the dosage from 100 twice a day to 150 twice a day as my SOB is getting worse and I am… Read more

I am only aware of what they (Mass General Hospital) has told me so far. They are very rigid which probably explains their higher than national success rate.

Not sure what hospital your working with, but I am sure they will let you know what their rules are.

My cousin is in year 7 post transplant. Another friend is at 4 years and she has a friend who is at close to 20 years.

The case manager is giving you the national average.  A lot of factors go into how long you live after the transplant.

At a recent meeting with the transplant group they were talking about a guy who was 17 years post op… Read more

Hi Robert I just had my cardio cath @ MGH today no stents needed. A cat scan reported that beside that the fibrosis in the right lung the also noted something in the left that is most in likely the fibrosis, but there is a small change its the early stages of lung cancer. Suggest another CT is done in 6 months.

I will be meeting up with Dr,… Read more

We were just at Briggs the other weekend. I love them so much that when I was in Plymouth, I would travel up to them to get my plants.

Coffee would be great. I have no appointments in Boston in June so maybe we could hook up then and I can tell you what I have learn so far on this journey. I was diagnosed Feb 2016

Cynthia, Good Morning. Not sure if the Generals program is bigger than B & W’s but they are more rigid. Also not sure if there is an age limit. If you like I can ask the next time I am talking to them.

What part of RI are you in? I live on the Cumberland line (North Attleboro).

As some know here I am currently going through the evaluation process to see if I can get on the list. I am going through  Mass General Hospital, Boston who has a really high success rate. Probably because their criteria is so rigid.

My thoughts on the concept of a transplant? Scares the crap out of me. I am someone who need to be as much as… Read more

Not sure if I am dealing with the same issue (although I do have the nasal drip and nose bleeds), but when I am talking all the sudden my voice craps out on me. Sounds like I (for a better lack of description) a frog in my throat. Even trying to clear it, does not seem to do much until it decides to behave itself. Quite annoying if you ask me.

Hello.

When I am going about I am on 3 liters but when I am on the bike at the gym I bump it up to 5 and that helps my levels to get no lower than 87.

Congrats Gary on getting on the list. I am not on the list yet, Boston Mass General is considering me. They were waiting to hear from my health insurance before setting up my… Read more

Hi Bill I absolutely LOVE your attitude.

Boston has agreed to consider me. Scares me the prospect but I am going to do what I can.

Time will tell. In the mean time I try to stay upbeat and keep busy. Yes I get winded very easily but it is what it is.

Thank you for your attitude.

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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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.… 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… Read more

This is only a test, had this been an actual test…………………………… message received here as well.

How was everyone’s Thanksgiving? Good I hope.

Called my doctors office late Friday afternoon to let them know I have been getting episodes of blue toes (and some times the feet) and blue fingertips. Thankfully it does not stay… Read more

Afternoon Charlene
Just got my meds today. Phew.

Sorry that your dealing with those headaches. Hopefully they will ease up soon.

SNOW????? Nasty word. lol. Yes the rain finally stopped. We are suppose to be getting that dreaded S word Thursday night. Projecting 1 – 3 inches. Should be interesting because I have to go for my CAT scan… Read more

Morning Charlene.

No they did not call me. I called them and initially they acted like they did not know what was going on. Its suppose to be here today.

Had I taken the bag and then discovered that the pills were not in the box, it would have been a case of my word against theirs and they would not have been willing to reship. Personally I… Read more

Hi Michel

I used to be on Esbriet. Never had any problems until 3 1/2 months into it when I developed a rash that spread and was very itchy. Long story short, I had an allergic reaction to it. I am now on OFEV which unfortunately I get the diarrhea 5+ days a week.

Just like the Esbriet, there are many foods that I no longer like. Such… Read more

Ok Once again I have forgotten how to start a new topic but this was so funny, in a sad way I just had to share it.

So I get my OFEV from CVS Specialty. They call me this past Thursday to see if I want to order my next months supply. I said yes as I only had 7 days left here at home. No problem they tell me, they will get it to the pharmacy… Read more

Morning Charlene

Just got back from voting and grabbed a few things on sale at the grocery store.

I can not even remember sleeping 10 hours without waking up several times. Hope your not getting the virus.

I must have forgotten to mention that I am the surgery queen here. lol Killed my arm while working as an EMT which put me out of… Read more

Good morning Ray

Very happy things went well for you last Friday. Bummer about the shoulder issue. I do not do well with those shots but like so many other things I seem to be a magnet for problems. The PT will help you as I have had shoulder surgery 5 times.

Ah the Z pack. I have had them in the past, they seem to work fine. But as I… Read more

Afternoon Charlene

Not only do we need to remember stuff to talk to our pulmonary guys, but we have to be on our toes with others who might be prescribing medication for us. As we sadly know, many doctors have no clue about the meds for the PF and in reality only have a thumb nail of knowledge about PF to begin with.

As for the shingles shot.… Read more

Good Morning Charlene

Always happy to provide any tid bits of information that I might come across. Now I just have to remember that information should my primary opt to put me on a ZPack.

I do not do the flu shots. I got shingles this past spring, right around the time I had the reaction to the Esbriet. My primary was telling me about the… Read more

Hi Charlene

Maybe I worded it wrong but the Zpack has the risk of a negative reaction when taking it while on OFEV. The doctor would not prescribe it to me for at home. Said he would if I was in the hospital but that was only because they could monitor it and if there was a reaction they could respond quickly.

take care
Paula

Morning Charlene

Yes he gave me a script in case I am not feeling better by next week. I am starting to feel slightly better, hope I am not jinxing myself saying that. lol

A Z pack is a 5 – 7 day regiment of an antibiotic. Here is a link to describe it

https://www.webmd.com/drugs/2/drug-20602/zithromax-z-pak-oral/details

Supposedly it… Read more

Morning Ray

Thanks for the update. Such a long process to get up to the full dosage. Makes one wonder how effective it will be. Heck its a crap shot doing the full dosage.

Good luck tomorrow. Will you have to spend the night or can you come home after the procedure? I will be thinking good thoughts for you.

I apologize for not being… Read more