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Starting Ofev
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@CharleneMarshall
Hi Charlene. As you will note I seem to be getting my posts through at last. I note from several participants that they are US residents and I do have empathy with them over the difficulty they experience in paying for OFEV. If it were not for the fact that our government funds the drug in Canada (with certain qualification requirements), I doubt I would be on it.
I noted 2 postings in particular. Jean Benford was looking for assistance in paying $2300 a month. Jacki Baum provided information about 2 support outlets so hopefully Jean saw this.
For those of you whose diagnosis is new I would encourage you to educate yourself about IPF as much as you can. There is a wealth of information on the disease on the internet and a myriad of articles on interpreting Pulmonary Function Tests (PFTs). There are also a series of educational videos on You Tube on PFTs. Also keep a positive attitude; don’t assume your condition is going to worsen because as Charlene has pointed out in an earlier post, IPF effects people in different ways. I was definitively diagnosed in 2012 but evidence shows I may have had it since 2008.
So as the say in the UK where I was born, “keep your chin up” and good luck to all of you.
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Hi Bob,
Yes, I am so thrilled that your messages are getting through at last. Thanks for sticking with us, as your contributions to the forum are very valuable and we appreciate the time you take in posting!
I agree re: the US residents and their struggle to pay for Ofev. I am in Canada as well, and with all of my debt (school debt, as I did both a 4-year Undergraduate degree and then a 2-year international Masters degree) and those payments, I doubt I’d be able to afford the Ofev as well. I would have to get creative, ie. fundraisers or something to afford it if it weren’t covered by our healthcare plan. Starting out with a career (I’ve only been working in my career for under 5 years), plus paying for a mortgage, school debt, etc is a lot and I couldn’t imagine having to factor in the cost of a medication this pricey as well.
I do hope Jean and Jacki connected around the ideas for financial aid to help with this drug too!
Thank you for your kind and encouraging words Bob, great ones to go by. Lots of information online, and this forum has lots of wonderful people to help answer questions too. Thanks for writing us!
Warm regards,
Charlene. -
Hi Charlene:
So you are in Ontario too? Where? I’m in a small village called Colborne which is situated between Cobourg and Brighton. If you know the 401, Colborne is where the “Big Apple” is located.
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Hi Bob!
I know where Coburg is, my brothers used to play hockey there although it is about a 6 hour drive from where I am. I’m about 3 hours north (and a little west) of Toronto. Hello from a fellow Ontarian! 🙂
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I had to quit. After months of not going out, staying home worried about diarrhea I went to family thanksgiving. It was ruined. I just can’t take it anymore. I’m tired of the restrictions, the schedule, the diet changes. It isn’t worth it to me.
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Hi Anne,
I am so sorry to hear of your experience with the Ofev, it breaks my heart knowing how much it is interfering with the things that should otherwise bring you joy. Is your doctor willing to try Esbriet for you, to see if you tolerate it any better? This is of course if you’re wanting to try it, and I can completely understand if you’re not given your tough experience with Ofev. Did your doctor ever bring up a stomach coater medication, to see if that would help with the diarrhea? I am no physician so I have no idea if it will help, but sometimes I have to take an anti-inflammatory medication that is terrible on my stomach and my doctor offered a medication to help coat my stomach when I take it and it seems to help. I can go check the name of it for you if you’re interested? Not sure if it would have the same effects for Ofev or not….
Thanks for writing, but so sorry to hear of your tough experience.
Hang in there,
Charlene. -
I have found that if I have a bout of Montezuma’s revenge, I simply don’t take the next Ofev dose and let my body return to its more normal behavior. This usually works for me but it might not work for everyone.
In my non-medical opinion, the value of quality of life by not taking the drug for 12 hours,even 24 hours, far exceeds the possible advantage (which I suspect is minuscule in the overall scheme of things) the drug has on extending my life. Will I die 1 day sooner? I’ll play that game for 1 more day of quality of life.
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Hi Karl,
I really like how you phrased this, and your approach to valuing quality of life over the possible advantage of the drug causing the problem. I agree, in the long run, taking a break from a drug for 12 – 24 hours to feel better is likely not going to be too harmful, and many of us choose to value quality of life especially when quantity isn’t guaranteed, unfortunately. Your words really resonated with me, thanks for sharing them and letting us know how you manage the unpleasant side effects of our anti-fibrotics.
Thanks again for connecting and I hope you’re doing well!
Charlene.
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@Charlene Marshall
Good to hear from you. I seem to recall that I read there was a study that showed combining the 2 medications did not indicate any better results that each being taken separately but I don’t know where I read about it.. I have to admit when I saw this whole idea I took it with a pinch of salt. The cost would be horrendous and Steve and I were joking that i’d need an extra suitcase just to ship my supply to Florida.
Had a PFT last week and see my Doc on the 10th. I’d normally be in Florida already but had to hang around to be sure my liver didn’t leak or something. We have all arrangements made to get out of Dodge on the 15th and only a very solid medical reason is going to keep me from not following through. I refuse to allow this condition or the medication to control my life. Next year my Doc better get organized because i’m outta here November 1st.
Enjoy your trip to the Big apple. Last time I was there was July 2001. Took a bus tour that included the WTC. A few month’s later 911 happened.
Regards
Bob
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Hi Bob,
Thanks so much for writing, and I am so glad your message continue to get through to us all on the forum. How is your week going so far?
I am busy preparing for two events (kind of like a fundraiser, helping me with some medical expenses) this week so I will be ready by the time Saturday night hits and both are over with. That said, it’ll be nice to see friends and family come together for support.
Yes, I agree with you re: the two anti-fibrotics being used together and not only the luggage that would be required to transport them anywhere, if spending time outside of home, but also the cost, particularly to our US friends. It would be next to impossible to afford the drugs together I’d bet. I would imagine if a lot of data showed the benefit of the two drugs being used together, then some doctors would start prescribing that and I don’t know any who do that, other than maybe one I’ve heard of through this forum but they were kind of just being optimistic about it based on my understanding. I have enough drugs and don’t need any more 🙂
Good for you, not allowing this condition to keep you from doing the things you love to do. I wouldn’t want it to keep me from the warmth and sun of Florida either! If you think about it, please let me know how your PFT goes and follow up with the doctor on Monday, I’ll be thinking of you.
My vacation destination certainly won’t be as warm as yours, but I love NYC at Christmastime. I went last year and unfortunately it was a disaster – a NYC yellowcab crashed us headon into a pole and we were all injured. We’re in the final stages of a lawsuit / settlement as a result of that, but its been a mess this year. I have so much hope that my trip this year will be 100% better and I am going with my Mom who is very excited to see the city. We will be doing the 9/11 memorials too, I’ve done that before but she hasn’t. Shoudl be a good trip, thanks again for the well wishes.
Take care,
Charlene.
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@Charlene Marshall
Hi Charlene: Boy the things you learn about. You know you originated this Forum and all the particpants, including yours truly, have given you input into some parts of their lives and their history with IPF and OFEV. But I have yet to see Charlene’s history with IPF and OFEV. And then I mention my visit to NYC way back in 2001 and bang!, you tell me about the serious accident you and other family members were in last year. What an awful experience. I hope you had Emergency Travel Insurance and if not is that perhaps what the fundraising you mentioned is about? Good luck with the final outcome of that settlement.
I’m sure your trip this time will be eventful for more pleasant reasons.
I’ll let you know the outcome of my visit on Monday…….I know exactly who is leaving town on the 15th, the only unknown is will it be with my Doc’s blessing!
Take care and god luck with the fundraising.
Bob
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Hi Bob,
Thanks for your reply and I hope this note finds you doing well! I think you’re in Canada, not too far from me actually so I hope you’re enjoying the beautiful Sunshine this morning. The sun makes a huge difference for my mood, and its been nice to see it again the last few days. Maybe it is getting you prepared for the warm, sunny days ahead for you in Florida! 🙂
It is so nice hearing everyone’s story on this forum, isnt it? I find it brings me a great deal of comfort although I certainly wish none of us had to deal with this disease. Regarding my own history with IPF, diagnosis and medication, you can find it here in a reply to Rene if you’re interested: https://pulmonaryfibrosisnews.com/forums/forums/search/?bbp_search=rene
Its a lot to type out but I did a thorough explanation of how I came to be diagnosed with IPF just a few weeks back for her. Yes, unfortunately the wreck in NYC was pretty bad last year, we’re still in a settlement process for that. I am eager to go back to NYC this week (a year later) and make new, happier memories there with my Mom. We did have travel insurance thank Heavens, so our hospital bills we believe will be covered in full, just waiting on the confirmation of that. Unfortunately, its the rehabilitation costs that have been so expensive as my work benefits only cover so much per year. This is where I am wanting some compensation for through the settlement. We’re in the final stages of that so fingers crossed the outcome is good for us!
The fundraising is actually just a bit of extra money for me, as I was off work for a bit completing a pulmonary rehab program and unfortunately, school debt doesn’t care if you have a chronic illness: they want bills to be paid. I am still doing okay, and did go back to work (although I got really mad this week and wrote a resignation letter, which was a bit reactive so I’m working through that with my employer. They “understand” I am under a tremendous amount of stress right now) so income is flowing again. That said, the fundraisers were something I love to do – helping others make custom decor signs for their homes. I did all the prep and had the supplies, and they paid me to come make them so it was really nice. Just glad it’s over, it took a lot of energy out of me 🙂
Fingers crossed for a good appointment on Monday, and safe travels on the 15th! Looking forward to hearing from you from Florida.
Regards,
Charlene.
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I’ve been on OFEV since March 2016. Started off fine then got the typical side effects. One tip that seems to help, that was recommended on some site I was on, was to have protein in the meal you eat every time you take your OFEV. Really seems to have helped.
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Thanks so much for sharing this tip/reminder with us, Zach! It is a good one and unfortunately is one I sometimes forget, especially as I am eating something when rushing out the door. Do you find any particular protein more helpful than another, ie. a protein powder/shake vs. a chicken breast with your meal? Just curious as I don’t have too many side effects from the Ofev right now but I am guarded because I know others have developed a sudden intolerance for it so I always want to have some “tools in my toolbox” to try if that happens for me.
Thanks again for sharing, looks like your post was really helpful for a few folks already.
Have a great day!
Charlene. -
Hi Charlene:
I’ll respond to your total posting a little later but i’m intrigued about the rehabilitation costs you are incurring as a result of your accident. I’m assuming you have hired a lawyer to fight your battle with the insurance company and any costs you are incurring now will be part of that settlement. OHIP also covers rehabilitation costs but i’m not clear on where they stand when the accident occurred in New York State. Generally there is a distinction made between what OHIP covers and what the Auto company should cover, and Rehabilitation falls into OHIP’s bag. If they won’t cover it because the accident happened outside Canada then clearly (to my fuzzy mind) it has to be part of your settlement as an ancillary expense under “pain and suffering”.
I’m sure you or your lawyer have looked into the ins and outs but since I spent 45 years in the life insurance business, the topic intrigues me.
Elaborate if you feel inclined.
Enjoy your trip
Bob
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Hi Bob,
Thanks for your kind words, and no worries – I don’t mind sharing this experience at all. Actually, I’ve learnt so much about what needs to happen when you’re in a car accident out of country by “trial and error” that it’d be nice to pass on this new-found knowledge to someone. That said, I hope no one ever needs my help with this type of information!
My work benefits are like most other standard policies in Canada, I have so much per calendar year for things like massage, chiropractic support, physiotherapy, etc. What I’ve needed in terms of rehabilitation far exceeded the allotment for this calendar year, so unfortunately I’ve paid quite a bit out of pocket. Early in the year (shortly after the accident happened) I was seen at a physiotherapy clinic specific to muskulo-skeletal injuries, as I had significant damage to my shins. I needed both PT along with something called electric shock-wave therapy so after going a few times there, my benefits for PT got eaten up really quickly. Then in April I was diagnosed with a concussion, even though it was 5 months later they said oftentimes an untreated whiplash injury leads to post-concussive symptoms, which I was having. So as a result of that I’ve been going to a concussion PT that specializes in treatment of motor vehicle accident patients, and that is $110 per visit (usually 60 minutes). It is helpful, but I’ve spaced out going because I can’t afford to go that often now. I’ve also been seeing a massage therapist to help with the inflammation in my neck and shoulders that has developed as a result of my neck injury sustained in the crash, it is just a mess! I truly had no idea how much a car accident could impact your body for such a long time.
We have hired a lawyer to represent us in the case, and actually had lots of options because this should be an “easy” case to win since we were passengers in a commercial vehicle that crashed. There was no other vehicle involved, so there is no doubt that the driver is at fault. Our lawyer is through the US though, as it had to be that way given where the car accident occurred. As a result, because we aren’t going through our car insurance since our vehicles weren’t involved and we didn’t want our premiums to go up, we can’t access OHIP for coverage of our rehabilitation expenses. This was the chance we took by not opening a personal claim and having our monthly rates go up; we’d just factor all of our rehabilitation expenses and then lots more into a settlement. I just really am desperate for this to be over, and to come out on “top” financially. It’s been such a mess! I really am curious to note the amount of the settlement we will be demanding, I should know that in a few weeks.
Feel free to ask any more details, I don’t mind talking about it. It was emotional for a little while after the accident, but I’ve really worked through most of that now.
Take care and chat soon,
Charlene.
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Hi Charlene:
You might be in NYC by now.
Thank you for your detailed reply. It was as I expected but I really don’t understand why OHIP wouldn’t have covered your rehab, despite the fact that you were not claiming through your Canadian auto insurer. Did you question your family doctor about this and ask him for a referral to the rehab clinic(s)? To my mind (the fuzzy one again) you were involved in an accident and it is co-incidental that it happened to be in NY state. You are not receiving rehab in NY state, which we know they wouldn’t cover, but here in Ontario. Hope you won’t mind but i’m going to pursue this a bit more and will report back my findings.
Reading your experience leading up to your diagnosis of IPF, you seem to have had a rapid onset of the condition given the sudden change in your well-being. Where are you at now? Do you have the usual symptoms? What was your last FVC reading on your lung function test?
You asked me to let you know the outcome of my LFT and it was all very positive. So much so that my FVC went UP 11% from 94% to 105%. This is why I sometimes feel a fraud when I read and hear other peoples’ experience and why my wife and I have questioned my diagnosis. But i’m not complaining. As a result we have the green light to leave for Florida on Saturday.
Will get back to you on my OHIP research.
Regards
Bob
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Hi Bob,
So nice to hear from you, thanks so much for doing some research on OHIP for me! Did you get to Florida safely yesterday? I think if memory serves me right (though, I am quite tired from NYC :)) you were going to be leaving yesterday. How is the weather?
I am home from NYC and will likely take a few days to catch up on the forums but my trip was absolutely magical. It really made up for the heart-ache that came with last year’s trip and the accident, which is what I needed. I love NYC again, I think it is so magical at Christmastime and was reminded of that again this trip! How was the rest of your week and weekend?
I ended up getting a referral to the rehab clinics through the ER that I had to visit after returning from NYC last year when the accident happened. They could have billed our auto-insurance for rehab costs, but we didn’t want to go that route, and therefore OHIP wouldn’t cover the remainder of the bills (that auto insurance wouldn’t cover). I don’t mind your reporting back on any findings, I appreciate the learnings as this has been such a learning curve for my friends and I who were all involved in the crash. I did just get a form back from our employment insurance seeking more information to cover the outstanding thousand(s) of dollars hospital bill so thats good news, since it isn’t a denial form.
So glad you got the clear to travel, and even happier to hear your FVC went up 11% , that is wonderful news! On any given day, I typically sit in the mid-40s in terms of my FVC percentage. I don’t find the shortness of breath as bad as I did when I was trying to figure out what was going on with my lungs, but I do find the fatigue and dry cough pretty overwhelming some days!
Hope your flight went well and that you’re gearing up for a warm holiday season in Florida.
Cheers,
Charlene.
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Thanks Zach, That’s a reminder I had forgotten.
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Hi Charlene
Will write more later. Just got to the house in Florida. We don’t fly we drive. Good uneventful trip.
Later
Bob
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Sounds good Bob, I’m glad to hear you made it down to Florida safely and that your trip was uneventful. If it is sunny and warm there today, please send some of it our way. It’s rainy and grey here today! Enjoy your time there and happy holidays!
Charlene.
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@Zach Adman
Thanks for the tip Zack. Could you comment a bit more on the side effects you experienced and a little more specifics on the improvements you noticed?
Bob
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Typical ones, nausea, diarrhea. I still get them periodically, but much less than before.
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@Zach Aldman
Thanks Zach. Have a good weekend.
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Charlene
I normally have cereal for breakfast so started adding an egg for protein. At dinner, if I have pasta, for example, I’ll have some turkey slices afterwards as my protein.
As you can see, I’m not very imaginative in the kitchen.
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Hi Zach,
Thanks for getting back to me and no worries re: not being super imaginative in the kitchen. Sounds like you’re managing to get what you need, which is the most important. Adding an egg to meals is actually something really easy but not something I think about very often, so good idea. Thanks for sharing!
Take care,
Charlene.
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Hi Charlene:
Following up on OHIP and Rehabilitation.
The OHIP site is pretty specific on who they cover – seniors and those under 19, as well as those claiming under Workers Comp or under their Canadian auto insurance. I know you aren’t under 19 and based on your picture I doubt you are a senior. The site is less specific about who else they will cover but they use the phrase “may provide coverage” where you are discharged from a hospital and as a result of injury. Here is another site you might find of interest:
https://physioinmotion.ca/blog/ohip-and-physiotherapy/
I also spoke to a Travel Insurance carrier and to WeFixU who I go for a Chiropodist and each didn’t outright say the door is closed. Therefore it seems 2 options are open to you:
1)Detail all of your expenses to your US lawyer and seek reimbursement as part of your settlement and/or
2) File an Appeal with OHIP for their consideration by their Appeals Committee.
Again I have learned something from this little exercise.
Regards
Bob
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Hi Bob,
Thanks so much for the follow up information regarding OHIP and rehabilitation. It is really interesting, and I guess parallels what the rehab centers advised when I was deciding about whether or not to bill through our auto insurer, but did decide against in the in the end. I’ve built in all expenses to the settlement amount from the lawyer, and am just waiting to hear from her on the “demand” we’re going to make. If it doesn’t come through successfully, though it sounds like it will, maybe I’ll consider the appeal with OHIP. Good information, and I’ll share it with the other two in the accident too as I don’t know where they are in their settlement process.
Thanks again, I appreciate it and glad you found out some information in the process. That said, I hope you never have to use it 🙂
Cheers,
Charlene.
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Hi Charlene:
It is warmer down here in Florida but we have had heavy rain since about 2am on Thursday morning and straight line winds and a tornado south of us that damaged 80 mobile homes and took the roof off a detached home. So not all is great in paradise. Have a very merry Christmas.
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Hi Bob,
One of my colleagues this week was watching the weather for Orlando as she and her family are headed there for Christmas, and she mentioned all the rain/flood warnings that are out. Not sure if you’re anywhere near Orlando, but would make sense to be with the weather you mentioned you’re getting as well. At least it is warmer there, hopefully the rain stops and the sun comes out for you! I love Florida, although it’s been awhile since I’ve been… maybe I should consider a trip there in the new year. 🙂
Have a great Christmas!
Charlene.
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Hi Charlene:
I had some experience with filing an appeal through OHIP. One of the interesting things I found out is that all of their communications are sent via courier. Also, at the hearing itself, which was via a conference call as I was in Florida, the Chairman or Moderator was a QC. So they wouldn’t pay my claim but they could incur considerable expense to fight it. QCs don’t come cheap!! That said I still encourage you and your friends to appeal.
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Hi Bob,
Thanks for writing and sharing these details with me. This can be something I consider in future, for sure and I might reach back out to you to obtain more details. Whether we appeal for OHIP coverage I think will depend on the result of the settlement, although our lawyer suggests that she doesn’t think we will have any trouble getting the settlement due to the conditions of the accident. That said, there is always a risk that a “loop hole” will be found unfortunately. It’ll be good for my friends and I to keep the OHIP appeal in mind though if needed. Thanks again for sharing. Hope the rain / weather has settled down some for you in Florida! You sure aren’t missing much here in Canada: its another chilly, windy and dreary day!
Cheers,
Charlene.
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Hi Charlene:
Yes it is warmer here even if it has been wet. We are 2 hours straight west of Orlando.
Those deary winter days in Canada are what would drive me potty and as far as the cold is concerned i’m a coward.
Hope it brightens up for you.
Regards
Bob
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Hi Bob,
I’ve heard Florida has been quite wet this season, hopefully that sun comes out soon and dries everything up for you. What are you spending your days doing in Florida?
I sure miss the sun here in Canada, feel like we haven’t seen it in months or if we have, it has just been in short glimpses. It’s supposed to snow a bit today, which I am okay with if it means a white Christmas eve/day. We’ll see – seems to “warm” to snow right now but I’d much rather snow than rain. Fingers crossed!
Happy Holidays.
Charlene. -
Had been on Esbriet for 2.5 years had a decline so doctor switched me to Ofev. Been taking 2 months getting bad joint pain and muscle pain. Anyone else experience and did it go away after a bit
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Hi Glenda,
Thanks for joining the PF forums – welcome again! This is a wonderful group of people who will always help you if they can 🙂
Sorry to hear you’ve been experiencing joint and muscle pain since switching to Ofev. Did you have this on Esbriet as well, even initially? Unfortunately joint and muscle pain is something I experience on the regular now too, and have been on Ofev for awhile (never was on Esbriet) so I wonder if they are connected? I thought in general my pain might just be from chronic under-oxygenation but maybe it is medication-related. Other than trying different meds for the pain (which I’m not a fan of, but I know lots of people are) I use topical lotions with an anti-inflammatory in it, such as Voltaren. I do find it helps quite a bit – have you ever tried this?
Goodluck and feel free to connect anytime. I hope you had a nice holiday!
Charlene. -
Hi Charlene and Glenda:
I have to admit you are both the only people I have heard of who have experienced joint and muscle pain. I have just re-read to booklet that we are given in Canada with first OFEV prescription and there is no mention or even a hint of joint and muscle pain. Glenda Have you got a support group and a nurse assigned to you by the OFEV support program? If so I would definitely discuss it with them. If not i’d go direct to the manufacturer, Boehringer Ingelheim.
As far as the joint pain is concerned I have taken Clucosamine Sulphate for years. Its not a drug but a health food supplement that you can buy in Walmart or any drug store or health food store. Walmart is the cheapest. I only take the basic form and not the form that contains other other additives like Conglotin (sp) as their effectiveness is questionable and it makes the basic form much more expensive. I have no joint pain whatsoever and i’ll be 80 in February. I believe the recommended dose is 2000mg a day to start and then 1000mg a day. You can look it up on the internet. It’s not immediate but will take a month or 2 to kick in. Hope this helps and stay in touch.
Regards
Bob
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Hi Bob,
Thanks for getting in touch with us about these unusual symptoms that Glenda and I are experiencing. How is the weather down in Florida right now, has that rain stopped yet?
I have to first disclose that I’m not certain the muscle/joint pain is directly linked to the Ofev but it could be. I have some other things going on, following a car accident last year that might also be the culprit of this type of pain. My doctor has also explained that it can be caused by general under-oxygenation as well, which I’m sure is part of my issue.
I’ve not heard of the Clucosamine Sulphate before but I’ll maybe keep an eye open for it the next time I’m at my local Walmart, thanks for the suggestion Bob. I like the idea of it helping/reducing pain but not being an additional drug, because if I can avoid more medications I’d like to.
Thanks again for sharing and hope you’re enjoying Florida!
Charlene.
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Hi Charlene and Glenda:
I copied the drug manufacturers name from the internet so that explains all that gobilty-gook before the name. No I wasn’t drunk!!
Bob
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No problem at all Bob, I edited the formatting so it shows up correctly now 🙂
Cheers,
Charlene. -
Hi Charlene and Glenda:
Rain long gone and today it is 80F and these temps will continue until about next Thursday when the next Front s due to drop us back down into the 60s for a few days. That’s typical Florida winter weather, particularly in an El Nino year.
Yes try Glucosomine. My wife also uses it and swears by it. By the way I spelt it wrong last time: it beins with a G and not a C. but remember only get the basic one.
Yes Glenda it would be very interesting to hear what the manufacturer says. Also can you tell us where you are from? Charlene and I are both in Canada.
Regards
Bob
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Hi Bob,
Wow -80s F would be a wonderful change right now, although I can’t imagine what really warm weather would do to us here in Canada in December. It would be so confusing! That said, on Thursday it was +10C, and I was out and about in just a sweater, it was weird. This morning however, I woke up to a thick coating of the white stuff on the ground here, so enjoy those Florida temperatures! How long do you and your wife stay in Florida for?
Happy New Year to you!
Charlene.
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Did look up muscle and joint pain is a possible side effect. I will call manufacturer
thanks
Charlene and Bob
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Hi Glenda,
Thanks for getting back to us. If the manufacturer mentions anything of particular interest or help when it comes to the muscle/joint pain being related to Ofev, will you report back and let us know? I hope your pain is being managed alright these days.
Thanks for writing,
Charlene. -
Hi Charlene:
We are here until the end of April. Due back in Ontario on April 27th.
Happy New Year to you too!
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Wonderful Bob, enjoy the next few months of warmth and sunshine in Florida!
Looking forward to a wonderful 2019, thanks for being part of my circle of support in the last year!Cheers,
Charlene.
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Charlene and Bob I am living in Birmingham AL. Been here 18 years originally from Michigan and hubby from IL. I was diagnosed in with IPF in oct 2015 but had in 2013 dr never saw X-ray. I went on oxygen last Jan and have gone from 2L to last 3 months 4L. I go to UAB which is a center of excellence so I am lucky there although my doctor has left to go to Vanderbilt so having another in group.
I am an Ambassador for the pulmonary fibrosis foundation so doing some travel for them raising awareness. Been married 47 years 2 grown children and 2 precious granddaughters 8 and 11 so I am blessed best wishes for you all for a great happy healthy New Year
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Hi Glenda,
Thanks so much for sharing some information about yourself with us, I love connecting with folks on this forum! I have heard really great things about UAB as a centre of excellence, and know a few (3 that come to mind) young people <30 years old who have had successful transplants there due to CF, not IPF. Will you/have you considered transplant or will you be a candidate for it one day?
Very cool about being an ambassador for the PF Foundation – they’re doing really great work out of the states for those of us living with this illness. Thank you for the time and energy you put into that role, which ultimately benefits us all. Sounds like your grand daughters are at a wonderful age – enjoy moments with them, I bet Christmas was fun this year given their ages? Enjoy! Have a wonderful day and all the best in 2019!
Charlene.
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Hi Glenda:
Thank you for giving us your background information. It is very helpful to know as there are usually differences on the handling of OFEV in different countries and I know there are definite differences between Canada and the US. I was born in Belfast N.Ireland, went to live in London at age 16, got married to a gal from Gloustershire and emigrated to Canada after 10 years. Been in Canada for over 50 years. I’m afraid i’m a bit of a fraud as far as IPF is concerned. Diagnosed in 2012 but I think it was there in 2008. CT Scans and Lung Function Tests say I have it but I have never had any of the main symptoms (shortness of breath and chronic dry cough). I went on OFEV in July after resisting it due to my lack of symptoms and side effects. So far nothing major of a negative nature. So when I hear of others like yourself and their experience I really do feel a fraud. I have read quite a bit about it and if I can help others i’m more than happy to do so.
Regards
Bob
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You certainly are helpful Bob, and I am glad you’re on the forums. I will also keep my fingers crossed that the symptoms of IPF stay contained for you for quite some time; enjoy it for now 🙂
Take care,
Charlene.
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