Pulmonary Fibrosis News Forums › Forums › Welcome Lounge › One Year in!
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One Year in!
Posted by JLR on July 12, 2024 at 3:12 amHello
First time posting on here. I have read just about everything posted in the last year and do enjoy the information. I find myself somewhat confused with my current situation. I was diagnosed with PF and emphysema. I have a Spiriva inhaler along with Albuterol.I walk 3 miles 5-6 times a week. Walk inside out of the elements. One year ago I walked at a pace of 15 minutes per mile. In the last few months the same walk takes me 23 minutes per mile . I see my pulmonologist in October.He said I need a HRCT but doesn’t order one. I have a CT every 6 months. I will have my second PFT in October as well. Is this the normal procedure? After reading posts on this site I think I may need a new doctor.ever 6 months for check up and no time for questions.
Thanks for letting me rant. I hope everyone has a good day.
Take Care
Jeff
M-14 replied 3 weeks, 6 days ago 10 Members · 14 Replies -
14 Replies
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Hey JLR, I was diagnosed August of 2023. I get short of breathe very often, but it is worse in the mornings. My pulmonologist has me on 3 different meds that I use in my nebulizer. I have found them not to help. He also has me coming back every six months. I just do not find that the doctors take you seriously even though they told me that Progressive Pulmonary Fibrosis would be what took my life. Only God knows that , not a doctor. I went to my dermotologist a month ago because I had some concerns about a couple places on my skin and a problem with itching really bad. He put me on Dupixent. It is a shot you take every two weeks. This is a drug to heal your skin from within but it is also perscribed for asthma. I have a really hard time breathing when I get up in the mornings but this medication has helped. I was really surprised. I have not taken ofev and don’t plan to until I have to. I wish you all the best as well as all on this forum. Prayers for everyone.
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Thank You for responding to my post. I do hope that new drug you are on for your skin condition helps with your breathing issues in the morning. I may have to find a new pulmonologist. I have one appointment in October and will take it from there.
Thanks again.
Jeff
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I am 3 yrs in. My first two years, I treated with a pulmonologist that did not put me on antifibrotic drugs. Instead, he took the “wait and see” approach. The new standard since the advent of Ofev and Esbriet is to put PF patients on one of those drugs unless it is contraindicated because of other issues.
I fired that pulmo and went to my city’s teaching hospital and began treating with a new pulmo who put me on Ofev immediately.
You need a HRCT to see the progression of your disease. Honestly, I have no idea how emphysema affects the treatment of PF, but I would run, not walk, to a teaching hospital if you have one near you. Alternatively, see anither pulmo if you can.
Temple Mayo
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Thank You for your response to my post. I don’t have many opinions were I live. I have an appointment in October and if I am still not happy I will find a new pulmonologist.
Thank Again
Jeff
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I had IPF diagnosed with biopsy 5 and 1/2 years ago. Came to the conclusion that my life is my life. Spent 50 plus years taking it for granted. Your in charge! If your capable mentally and physically you got to get going . My pulmonologist always said it was important to maximize the good part of your lungs that you still have.
Started Ofev 100 mg at that time. ( couldn’t tolerate 150 mg) I have had my ups and downs with the diarrhea throughout the 5 years. Quite the aggravation at times but is worth the effort and obviously slowed the progression. Had the attitude that I’m doing all possible until they develop something to stabilize or reverse IPF. I understand that several drug trials are in their last phase and could have FDA approvals in 2025 that will change the game . Still hanging in there.
I am currently applying for participation in a drug trial that is in one of the later phases, with the hope that I will get something to assist in slowing the progression until something gets FDA approved.
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Thank You for your input in this matter. I do try to exercise my lungs as you said. It is a little discouraging that in one year I have added 7 minutes to one mile. I used to do 3 miles in 45 minutes now same 3 miles take me 68 minutes but I keep going to get the exercise. I am hoping they find a cure for this.
Take Care!
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I think it is fairly typical to see your pulmonologist every 6 months, although when I was first diagnosed, I was seeing mine much more often than that. I gradually shifted from monthly to every 4 months, then to every 6 months. I think alot depends upon how far the fibrosis has progressed. I was diagnosed almost 9 years ago, and my pulmonologist thinks that undiagnosed silent reflux (GERD) is what caused my fibrosis, as I have no other risk factors. I started Prilosec twice daily, and my fibrosis has been stable. I haven’t started antifibrotic medication since there has been no progression. I see my pulmonologist every 6 months, do a PFT once a year, a CT scan once a year, & a 6 min. walk once a year. I believe you have to advocate for yourself, & if your pulmonologist recommended a CT scan but hasn’t ordered it yet, I would call the office & ask if he/she intends to order it. Take a list of questions with you to your appointment & let your provider know that you have concerns that you would like to address. If this still doesn’t get your questions answered, it might be time to find another provider.
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Linda. you sound right on. I have taken over on my own behalf and have gone thru a good number of well intended Docs and PAs. Nothing against them and their good intentions, but if they are not ILD experienced and knowlegable then someone may be wasting your life line that’s left to some degree and you need to be very comfortable with anyone you see professionally and only you can determine that.
The only thing that makes me flare is when some one who should know better recommends I get bigger or better equipment from Inogen when my understanding is they do not currently mfr anything bigger than1-6 LPM ( I would have bought it by now trust me:-) and that is in a pulse mode. Our local Inogen in Dallas also does not handle oxygen. There are a few other larger permanent plug in non portable units out there by Devilbus and a few others but they are not portable, that I know of.
I have had PFT test and more Pft tests and yes the HRCT to me is the most critical tool for comparisons as one to the other along with a really good evaluation of each one against the other and against the first one that hopefully created a baseline for all to evaluate. The person they help the most however may be the next person writing a book. All its going to do is say whether you’re stable or on the move down or hopefully up eg is there movement or not?
The assumption is that the newest FDA meds are the only thing to promote and also the most expensive and yet we still say “there is no cure”, however if you can buy time, maybe, just maybe, its enough time to have one more approved med so we can then have two alternatives? But you are soo right that if we do not advocate on our own behalf then someone else may not either and then what?
***My question that has brought a number of blank stares has been “how many active Pulmonary Fibrosis, or other ILD cases has this doctor seen this year and what types, and what has been the most successful thing he/she has recommended or prescribed, so we can all share it? If that takes more than a half minute of Medicare charges to give that answer then I would start checking your local Forum Group for who they are seeing. There may be a reason. In my humble opinion there seem to be a number of groups who are consolidating local Docs offices into larger groups for “more efficient” practice and I’m not sure its in Medicare or the patients best interests. Just one guys opinion.
We can’t afford to waste too much time in our own interest unless we feel we are getting results of some kind. These are personal opinions of my own and with no professional or other motivating factors than a desire to get at least one or two more years of a good life. I do not give advice of any kind just opinions. Have a good day. George
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It’s great you are walking that much! A slight decline over time is probably normal for lung disease. I am facing some decline myself. Never hesitate to get a new doctor or second opinion. My pulmonologist quickly referred me to a major university hospital with many resources. I feel that has made a major difference in my care. I wish you all the best in your journey.
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Thank you for your input on this matter. I was not expecting to add 7 minutes to each mile in just one year. I am glad that I still walk and get some exercise just didn’t expect to move that much slower. I keep my breathing the same just move slower. I do not want to short change my doctor so I will see him in October and if I am still not happy I will look for a second opinion.
Thanks and take care.
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You need to find someone who specializes in this. Timing is everything. You want to stay ahead of progression. I highly recommend getting plugged into a transplant program like Temple University Hospital. At this early stage you can participate in clinical trials and you can also start taking preventative meds. I had a pulmonologist that was casual about this because my biopsy showed no signs of progression. Two years later. I had a transplant. Once you get onto the PF medical world it is a MUCH higher standard of care. Good luck!
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Thank You for your insight in this matter. Will see my doctor in October and if I am still unhappy with his treatment I will be looking for a new doctor. I do think time is of the essence. The sooner you get on the correct medication the better. I am only 60 years old and in good health otherwise so maybe I could do clinical trials.
Thanks again and Take Care.
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I’ve been on Esbriet since 2019. I also feel tired, but it could be the mit of other pills I also take for other issues. I have a new pulmonologist (previous one retired) and he is going to schedule me for another CT scan to learn what has changed. Other than feeling tired I don’t demonstrate any of the known symptoms associated with IPF. I’m 74 years old, a male, have 95% oxigen level, do not take oxigen, and if I can go another 10 to 12 years like I feel now, I’ll be a happy camper!
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Glad to hear you’re doing well. I had 11 good years but then it went south quickly. I did finally start start ofev but it is really too late. If I stabilize now I’m not sure I will like it. Oxygen always, breathless not fun. I too am 74 been healthy most of my life. Been lucky. Take the pill if it will keep you where you are.
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