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secondary symptoms related to IPF
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Thank you. I’m really nervous but also need the appointment. Just been in deep prayer for healing and help. I’m hoping for the best ughhh. This season of my life is tougher than any ever. Have a good night I’ll swing back around hopefully with good news etc.
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So he did not want to do the HRCT, he says I am going to be ok. He has 29 years exp and says I have a hard time trusting doctors. That I need to trust him and that everything looks good. It was a good appointment but there was no additional work up. I emailed him after the fact to see if he would consider the HRCT for me. I hope he does. Until then I just have to keep positive that I am going to be ok.
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Hi Rich,
Thanks for connecting back with us and letting me know how you made out at the doctors. They don’t often offer the HRCT unless they feel it necessary, due to the exposure to radiation in the lungs (this is what I was told anyways) so I guess you could reframe it as a good thing: they don’t feel it necessary at this time. That said, I can still imagine the frustration you’re feeling…
He sounds like a thorough doctor and is taking into consideration your need to find answers, but also with the balance of trust. That can be hard for patients, when our “gut” reaction says something isn’t right. Hang in there, and please stay in touch.
Charlene.
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Yes so it’s out of my hands right now. When I brought it up he was like you read too much. He’s not only 29 years pulmonologist, but he’s like chief of staff at a banner hospital here and holds other titles. He called me out that I trust no one but myself, and he was right. It’s just hard when your gut is worrying right? But from all the doctors I have seen, they have hundreds of years experience vs my 30 weeks of online research. I’ve been just praying about this and reading the good book. Hopefully with my change in attitude I will start finding relief in my symptoms. I did send him an email about my overall situation and symptoms, to see if he would order the HRCT. I don’t want anymore radiation then my body needs, but the peace of mind would be incredible. However I have had 2 ct scans 3MM in state of the art machines and not even a scratch. I have to trust that if something was there it would have shown. I have also read they can still do the HRCT at a low dose of radiation. It’s just getting a doc to do it for me is tough. Which is good as they do not see the need. Have to read between those lines.
my spo2 was 98 so he was feeling fine about things. Before and after I am still able to walk and run the same distance. He said with pulmonary disease, people can barely walk across the room with out getting sick. I understand that for sure. But at 38 I’m still eith perhaps some strength that maybe his other patients don’t possess, and maybe they waited too long not knowing they had a problem. He did describe my situation as a bit manic, which was spot on. I’ve been going nuts over this in more ways than one. So there is still a sleep study we are doing as that’s where I do struggle and hopefully and gracefully it gives us a positive answer to work on sleep apnea of some sort. So I’m going to keep praying and just stay positive about all of this. It makes the day go by better that way. Plus sitting by a fire reading my bible helps too. Thanks Charlene for wishing me the best. Hope things are well for you today.
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Hi Rich,
It sounds like your doctor was very upfront and transparent with his thoughts and advice, and while that isn’t always a bad thing, I know it can be tough to hear. Perhaps there is some weight in his suggestion of trusting him/technology more to get some mental relief that maybe there isn’t something wrong with your lungs. That would be the best case scenario overall, wouldn’t it? However, if your gut continues to tell you different, keep an eye on it and monitor for worsening symptoms. It does sound like the thorough investigation or scans you’ve received would likely reveal something if there was something wrong. I hope there isn’t, and that you find some comfort in the results thus far, improving your days a bit. Worrying and anxiety can also be symptom-provoking too, something to keep in mind.
Indulge yourself in things that bring you joy for now and keep an eye on your symptoms. Here’s hoping your sleep study will go off well, and either not reveal anything or give you some of the answers you’re hoping for. Have a nice weekend.
Charlene.
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Hey Charlene,
so I found an online doctor who wrote me a prescription for a HRCT. Scheduled it for Monday and paying for it myself. I don’t have time to sit and wait to get more sick etc. grab bull by the horns this is my only life. Prayers please it’s fine and I get my relief. Or at least can move on knowing I am ok per the best imaging possible
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Hi Rich,
Thanks for getting in touch and letting me know about this. Did you have an okay weekend? I’m glad you are able to get the HRCT, although sorry you have to pay out of pocket for it. Hopefully this reveals answers for you, or assures you that the other tests were correct and you can have some peace of mind. Please keep me posted on how it goes, I’ll be thinking of you tomorrow (Monday)!
Charlene.
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Hey Charlene,
So my HRCT scan came back clean. So no signs of any abnormalities. Time for me to move on and deal with my anxiety. Thank you for your help and God bless you and everyone else here at PF.
Richard
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Hi Rich,
Thanks for connecting back with us and letting us know that your HRCT scan came back clear. While not providing any additional answers for you, I hope it gives you a bit of relief in some way. Goodluck in your journey ahead, it isn’t easy but if we can be of any help, do let us know. Thanks for sharing your story with us and best wishes to you!
Charlene.
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Hi Julie,
I have posted several times on this website about my experience with IPF. I have played hockey for 50 years and 2 years ago after shoulder surgery my breathing was declining fairly fast so I went through all of the tests (PFT and CT scan) and was diagnosed with IPF. My U of M pulmonologist wanted to do a biopsy but my Pulmonologist at Cleveland Clinic said NO to a biopsy because he knew the scarring pattern. I told him that I had GERD for years on and off so he sent me to a GI. My breathing was getting so bad that every time I went on the ice I could only skate for a few seconds and then waiting for my next turn on the ice I broke down thinking that this may be my last time on the ice. Doing research I ran across WEI Laboratories and tried their 3 products for IPF for two months and for GERD for two weeks. I was then tested for Gerd and there was NO TRACE! I tried the IPF herbs for 2 months and a maintenance dose a year later and I am almost back to normal breathing and my last 3 PFTs have improved each time, some numbers are up around 200% of what they should be. The herbs are expensive but I am quite sure that they worked for me. I am playing 4 or 5 games per week because it is my passion! There are doctor comments that say many have gotten a lot better and/or cured. I think that you should give the herbs a try…
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Hi Denny,
I so appreciate the time you take to share your story with us, as each time I read it, it brings me new hope to know you are doing so well. It’s always so comforting when people have tried herbs or non-traditional medicines/regimens with success! Enjoy your time on the ice!
Charlene.
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Hi Denny,
I read with great interest your January 10th post about the benefits you experienced with Wei Laboratories’ products. I went to their site and could not determine what 3 products you used for IPF or GERD. I was diagnosed with IPF last August and have been taking Ofev. I also started acupuncture this year. I am very motivated to do everything I can to help hold off the progression of IPF scarring.
Can you please post again, identifying the specific Wei Laboratories’ products that you’ve used? When I look at their web site (https://weilab.com) under the Pulmonary Fibrosis & ILD condition, they identify 6 products they employ in that program. Also, I can not find anything relating to GERD.
Thanks and have fun on the ice!
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Hi George,
I’ll try to tag @denny-eliassen for you so he can respond to your questions when he has a few moments 🙂
There is another post on the forums, with direct information about someone at Wei Labs that can help you with particular questions about IPF and their products. I think her name is Kelly, let me find the post for you …
Oh, sorry, her name is Gabby per Denny’s post here. You can call her and apparently she is very helpful. I also see the herbs/blends that Denny ordered in the link above for you to check out in the meantime if you want George. Hope this information is helpful!
Cheers,
Charlene.
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