[paula]

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 perspective for me.

So I told them, that at that time I was holding my own and at any given time the IPF could go whacky and start getting very aggressive. At some point I will have to be on oxygen and need a transplant. I then told them that I was not looking for sympathy I just wanted to keep them in the loop and for them to know that if I said I could not do a visit or something it was simply because I was having a bad day.

The group was awesome. One guy, took my hand and said “We are here for you.” They all agreed and I thanked them.

[paula]

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 suggestions or ideas and even more importantly, we offer an ear to listen to your concerns, fears or whatever you may be feeling at any given moments. Family and friends are great support but as much as they try to help, they are not going through what you are. As I like to say, we all share the common thread of IPF. We get the ups and downs.

[paula]

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 ball of sorts. Not very often it is clear. Usually a bright white or white with a yellow tinge in it.

What I hate the most is when I am talking all the sudden if feels like I have a major ball of phlegm at the top where the collar bone meets, I lose my voice as this junk is blocking my airway as if I have a major chest cold. And until I cough it out, talking is very hard to do.

[paula]

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 found out that I am allergic to pigeon poo. Go figure. lol… Anyways to confirm he wanted to have a large biopsy done.

The biopsy came back that I definitely have IPF, the kind that gives you a short life span.

Off to Boston I went, and they agree that I have IPF but I definitely do not fit the normal traits. I had to laugh as I have had doctors tell me that I am an enigma. I never follow the normal traits.

Sometimes I get frustrated when they seem to be scratching their heads about my diagnosis but kind of hard to dispute it given I am now on oxygen, and my last pulmonary function test was a very large decrease in numbers. I too have lost over 20 lbs but sadly that has not improved my breathing.

But I am very happy that you are doing well and your right people need to get second opinions. Just to make sure.

Paula

[paula]

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 weeks ago the side affects really took hold.

My doctor did a PFT in Aug and my numbers dropped so much I am now on oxygen (3 liters) 24/7. I used to be able to take a little time off without it really affecting my sat rates but that is no longer the case. My CT showed little change. Doctor told me the PFT is more sensitive and shows stuff before you would see it on the CT.

So I am off of the OFEV for a month. And then we will try again. Hopefully the side affect of diarrhea will not come back like it was. My doctor really wants to keep me on something to help slow down the process. But as far as I am concerned if the side affects come back like they have been in the past 6 weeks, I will go off of it. The medical issues that the side affect would cause my body outweigh the benefit of the drug IMHO.

[paula]

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 back on it in Jan. He just wants to give my body a rest. And trust me when I say I am so enjoying the lack of need to go to the bathroom every 10 minutes.

I have not been documenting when I get the bluing. He had asked me if it was during exertion and I said no. I could be in the tub or in my recliner. There is no pattern to it. I did tell him on the rare occasions when I did not have my O2 on, and was say walking to the car I would get chest pains that would go away once I put the oxygen on. I told him about the one time that got my attention when I was sitting down, with oxygen on started getting midsternum pain and then started to get sick to my stomach. Thankfully that stopped rather quickly. On the ambulance such events would let us know the patient was getting close to have a full MI (heart attack). My doctor asked me if I had seen a cardio guy in the past. And I said yes in 2015 where they said my heart was fine.

As for Boston. Yes that is where I would go for a transplant. There are actually two hospitals in Boston that can do lung transplants. The guy in Boston I suspect would be the lead guy in making the decision for my going on the list but at the same time he would be working in tangent with my pulmonary guy down here. My guy constantly sends the doc in Boston updates though I have only been in Boston once.

Very cold here. As I suspect it is up there as well. We are going out for Chinese food tonight. Can’t wait. Will also be watching the football games. Not a fan of the team here in MA as I am a fan of the Wisconsin team.

Talk to you soon.
Paula

Oh happy belated birthday

[paula]

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 with Esbriet which made my having the allergic reaction to it all the more frustrating. . Such as life. I am going to enjoy my month of freedom of not having to take the pills and visit the bathroom so much. Like you I am not sure how much either of these drugs do. I know they are not meant to cure you or stop the progression, only to slow things down. Which so far seems to be the case in terms of the scarring. Sadly the function test said otherwise.

Here is my email address if you or Charlene would like to write me, heck I really do not have an issue with others here if they want to reach out privately. They just need to put a clue in the topic area so I know who they are.
[email protected]

Well I have to run, very cold up here but very sunny. Suppose to possibly snow tomorrow. Yuck.’
Paula

[paula]

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. Always wondering how things are going.

Sorry your wife is still not feeling better.

I realized by reading one of your postings to Charlene that I missed her birthday. Although to be honest I did not know the date, but HAPPY BELATED BIRTHDAY CHARLENE.

I am feeling much better since being taken off the OFEV. Sure beats running to the bathroom every time I turn around. My daughter is having a fit over it as she knows that in order to buy me time I need to be on it. But I said to her that this is just a break. BUT if being on it means having loose stools 24/7 I will take a pass. The amount of havoc that would cause my body and just the after affects of the issue are simply not worth it to me.

So Charlene, I know your busy but you really are the guru on starting threads, could one be set up where members here could check in just because? If not, Ray you and Charlene could also have my email so we can keep in touch.

Thinking of you warmly.

Paula

[paula]

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 them doing it. He asked if it was when I was active and I said not usually.

Currently I am not dehydrated, phew. Said my going off the meds should help with the situation.

The CT……. If I remember correctly (as I am sure you can relate so much information can be overwhelming) he could see a little more scaring but the report said it was better than the one done in 2017. For some odd reason the computer was not allowing him access to the 2017 film. Said he would look at it. I then said, doesn’t the CT report contradict what the PFT showed? He said that the PFT is more sensitive than the CT (they did not do the full level of scan as they do not want to always subject me to the radiation) and stuff will show up on that way before it does on the CT.

Said we are going to wait until I see him next month before we make the move for me to get an appointment in Boston. That will be when we will reevaluate the medication. We talked about the Esbriet but I reminded him that I had the allergic reaction to it. Even when they had me go off of it for two weeks, then when I started back at the lower dosage, within 13 hours, the hives were back. He said something to the affect of having me on the medication to help slow down the progression, hence the month off. I am for the break and to retry BUT if on the retry the loose stools come back like they have been, then I will go off of it. Having constant loose stools will not be good for my body. Not to mention that I am tired of having to go to the bathroom everytime I turn around.

My daughter was asking me a ton of questions and And I get her concerns but I can only tell her what I was told. It was ticking me off. Not sure if that makes any sense but geez I have my own feelings on this situation to deal with.

Off of me. Good luck Susan. I have laughed many times how I never forgot a dosage of the many pills I had to take with the Esbriet but for some stupid reason I would be doing something hit myself in the forehead when I realized I forgot to take one of my OFEV. Hope your family drama has settled down.

Paula

[paula]

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 minutes after I sat down to get my bearings.
Not sure what is going on, but something sure is.

My husband set up the tree yesterday and finished the outside lighting. He gets really into it. I used to but not so much anymore. And I definitely am not one to put up a tree this early but……..

Well have to run. Making a brunch and then clam chowder for dinner. Hope your having a good day. Talk to you soon.

Paula

[paula]

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 will let you know how that goes.

I tell people my falling into the 4% on titanium is because I am soooooooo special. I try to say that with a straight face but usually fail. lol

Mild day here today. Think I am going to try a new apple cake recipe.

Hope your having a good day.
Paula

ps. no problem on my replying to Susan. We are all in this together.

[paula]

@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 with that metal.

I know when I had the issue with the Esbriet it came on the heels of getting shingles. They had me go off the esbriet for 10 days. Then restart it again at the low dosage. within 13 hours of taking it again I broke out in hives.

I am on Ofev could not tell you if its doing anything.

Good luck and please keep us in the loop as to how things are going. Any questions, I am sure there are a few of us who have dealt with it. Or if you just need to talk we are here to listen and offer support and when needed a few laughs.

Take care
Paula

[paula]

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 blue for long. And I have to talk to him about the side affect of the OFEV. The bathroom issue is really getting to be too much. The rate that I am going to the bathroom I should be light as a feather. lol

[paula]

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 Friday. Roads should be lovely.

I hear you on the dry skin. Sometimes I feel like a snake shedding my skin.

As for having to go up against the pharmacy if I had not noticed that the pills were not there, yeah not something that I would like to do. Not afraid of them, but I have other things that have my attention and quite frankly I would be worried that the stress would only add to the problems that I got when I was so stressed out when we were selling our other house. Thanks but no thanks. As it is, I have noticed that unlike before, the amount of time I can be off the O2 without my numbers dropping low is shrinking. And I have noticed a few times that my numbers if low enough are not rebounding as quickly.

I was telling my friend this morning that I suspect I will be heading to Boston soon. Then the big question is whether or not they feel I have gotten to the point where I need to be put on the transplant list. That issue is such a mental balancing act for me. Do I really want to be on the transplant list? No. But I also do not want them to wait until things are so bad that breathing becomes even more harder. Then there is the chance for what ever reason I do not qualify for the list. Scary.

I just bought tickets for my son and myself to go to a Boston Celtics game in Feb. We go at least to one game a year. Have been for 10 years now. My husband does not think I should go, saying it will be too much for me. But I told him I was going. That this might be the last time I can do this, so I am going. Something that both my son and I look forward to.

Well I have to do a couple of things before getting supper going. I hope all is going well on your end. And it would not hurt my feelings one bit if you decide to keep the snow up there. lol

Paula

[paula]

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 do not know what happened as it never even showed up on my insurance for payment.

Raining here. Blah……..

[paula]

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 as cheese. Let me preface that with I love cheese by itself, but can no longer stand it on hamburger. And I can no longer stomach eating pizza. The mere thought makes me feel ill.

Have you talked to your doctor about the itchness? Do. They took me off of the Esbriet for 2 weeks and then we attempted to start it again (I also had shingles around the same time) to see if it was the Esbriet that was causing the rash. Within 13 hours of my first pill, I broke out in hives and a rash that was so itchy. I stopped taking it and the rash went away.

Charlene also knows of someone else that has had an allergic reaction to the Esbriet.

Let us know how your making out. We are all here for you.

Paula

[paula]

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 the next day so I do not run out. Great. (I have them send it to the pharmacy instead of me because 1) I do not want to hang around all day waiting for the UPS guy, and 2) if the package is left in my mail box and then disappears, I am screwed. So I have it sent to the pharmacy so they are responsible for the drugs until I get there.

I received a text from CVS on Friday informing me my script was in. Did not feel like going back out so I went to get it the next day (yesterday, Sat). So I tell the guy at the window I am picking up a script from the specialty pharmacy. He comes back with a really large paper bag. I said that was strange that the pills were in that large of a bag. I signed for it and said to the guy, why is the bag so big. He said it had a large box in it. Opening it a little he said it was a starter box. To which I said that is not right, and asked him to please open the box to make sure the pills were in there.

So he takes the bag, with the box and brings it over to the pharmacist. Shortly there after, they both come back and she is telling me how sorry she is and she does not understand what happened. I asked her what she meant and she said the only pills in there was for diaherra (sorry to lazy to check for correct spelling) but there was no OFEV pills in the box. She said I would have to call the specialty place, and if I needed her help she would attest that the pills were not in the package.

Of course the place is not open on the weekends. But I talked to one of the answering persons, who tried to contact the pharmacist to see if the order could be reshipped. He could not. So she talked to her supervisor who began the investigation as to what happened and why the pills were not send. They are aware that I now only have 4 days left at home. So they are suppose to call me in the morning tomorrow.

I told the lady on the phone that while I appreciated the extra pills for the loose stools (notice I am not trying to spell that word again. lol) that they do a great job BUT they are not worth $10,000.oo.

Should be interesting to see what happens tomorrow. Wish me luck.

[paula]

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 work permanently. I think on that arm/shoulder I had a total of 10 surgeries and my back is something like 5 or 6 surgeries. They all blend in together. Two of the last surgeries was because of the allergic reaction to the titanium rod they put in my back and then had to take out. Sadly when I was going for these surgeries the entire staff would remember me. On my next to last back surgery, the primary surgical nurse came out and said “OMG it is you. I saw the name and I had to come out. Can’t believe your back (no pun) here.” I told I came back to wish her a Merry Christmas since it was only a couple of weeks before Christmas. She gave me a huge hug. lol

Hope you are able to get some more hours of sleep and start to feel better.

Later
Paula

[paula]

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 explained to Charlene because I am on the OFEV the only way they will give me that form of antibiotic is if I was in the hospital so they could monitor more closely if there are any issues. So no Z Pack for me. The cold seems to be going away. And hopefully the fat fairy will find someone else. I would send her your way but she never listens to me. lol

Well have to get ready to go and vote. Should be interesting to see how the voting turns out.

Hope you have a great day. Thanks for letting us know how you made out.

Take Care
Paula

[paula]

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. My primary told me after I was pretty much over it about the new shot but said because of all of the medical issues I am dealing with, he would not feel comfortable suggesting it. Plus he gave up years ago trying to talk me into getting the other shots.

Thanks for keeping your fingers crossed to get the fat fairy to leave. haha

Talk to you later.
Paula

[paula]

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 new shingles shot that was out but he said he was not going to recommend it for me. Which was find by me.

The cold is slowly abating. Phew. Like you I try to stay health, usually I can. Normally I do not get anything but every five years I will get sick as a dog. Temp will go up to 104 – 105 which will stay there for around 3 days. And then everything returns to normal.

The fat fairy found me. I think its a residual affect from Sept when my doctor put me on a 10 day regiment of pregnisone. Hopefully I can get her away from me and start losing again. lol

Any word from Ray? Hope everything went well for him.

Talk to you later
Paula

[paula]

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

[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 does not interact well with OFEV. And as the doctor told me, if I was in the hospital they would give it to me only because they would be able to monitor me in case there is a problem and they can react quickly to it.

Hope Ray is doing well today.

Paula

[paula]

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 around much. I have been dealing with a cold that is basically kicking my butt. Went to the doctors yesterday. He feels its just a cold and as a rule they do not like to treat it with antibiotics as colds are usually viral. But he did give me a script in case this cold does not go away. At this point I am hoping the blooding noses end. And feeling like blah. BUT I did find out something interesting.

He was talking about a Z-pack but said there is a possibility of a problem with it since I am on OFEV. If I were in the hospital they would give it to me as then they would be able to quickly address any issues from the interaction. But I thought this news was very interesting and wanted to pass it along to others like Charlene who are on OFEV and let them know about the possible problem with being put on a Z pack while on OFEV. Not sure if its an issue if your on Esbriet.

Got to run. I have to drag myself out to the store and get groceries. I hope everyone is doing well and hope your feeling better Charlene.

Paula