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    • #25873
      Jay
      Participant

      Hi,

       

      I’m glad I found this forum. I have had shortness of breathe for years but it has worsened over the past 6 months. I spoke to a pulmonologist for the first time 6 months ago. He spoke to me and ordered a regular chest X-ray. He stated it was normal and I had nothing to worry about. 3 weeks I noticed I could barely walk up the stairs without feeling out of breathe. Bending over is a challenge. Getting up to use the restroom is even draining. This is very scary for me. I went to the ER 7 days ago and they ordered another chest X-ray which they said showed bronchitis. They prescribed antibiotics and prednisone. I finished the antibiotics and I’m still taking prednisone. I don’t really feel any relief. I also have a puffer. I went to a consultant yesterday and the doctor ordered a CT with contrast . I have my appointment tomorrow. He told me he is concerned about infiltrative lung disease or a blood clot. I didn’t know what infiltrative lung disease was until I came home last night and googled it. The outlook is bad. I immediately broke down into tears. I feel so lost and broken. I’m not sure what to do at this point. Am I just waiting to die. I did the 6 minute test and my OX was above 95%. It was primarily 98-99%.

    • #25876
      gil
      Participant

      Hi Jay,

      When I found out what IPF was, I too felt pretty bad but today I feel more optimistic and value each day.

      “I did the 6 minute test and my OX 5was above 95%. It was primarily 98-99%”

      That is pretty good. Mine  use to be that high now it is closer to 95%.

      Good luck,

      gil

    • #25877
      Trish
      Participant

      @jayrom0807

      Hi Jay,

      Good luck with your scan today.  I understand the extreme anxiety when discovering about ILD.  I am no expert and could be wrong in my reassurances but keep in mind that Pulmonary Fibrosis is rare.  Also, you sound young and it primarily strikes those around age 70.  There are always exceptions, but the odds are in your favor.  Also, the fact that you can exercise ok is a good sign.  There are other things, some benign, that can cause shortness of breath (anxiety being one of them).  So hold tight, get the scan and results and go from there.

      I am in the same boat as you today as I have a 1:00 telephone appointment with my pulmonologist to review my latest CT scan results and I am out of my mind with anxiety.  So I understand.

      Sending best wishes.

    • #25878
      Bob
      Participant

      Hi Jay,
      Sorry to hear about your condition. This could be caused by several conditions and lung disease is one of them but there are others such as cardiac problems.
      You need to find a really good physician for a full investigation.
      Let us know how you get on.

      Bob

    • #25896
      Sam Gilmore
      Participant

      I know how you feel when I had no energy to even get out of bed no quality life. I was first diagnosed with IPF 4 years ago I am 74 years old . My first doctor was not very encouraging my wife and I left his office feeling hopeless and afraid I felt like a was given a death sentence. After a few months I decided to find another doctor specializes in  IPF.  He took more test and put me on Prednisone regimen. I am now taking 10mg and feel good most of the time.  Energy is high. I do use oxygen as needed at #2. This does not have to ruin your life just take care of your self eat health and no we wont beat this IPF but we can live with it. Take care and I wish you the best. The unknown can be frightful but don’t let it control you.

    • #25897
      Pete Besio
      Participant

      Hi Jay,

      I empathize with you, as I bet many members of the forums do.  The Google provides much information, but a lot of it needs filtering.  When I was diagnosed with IPF, I Googled it.  Life expectancy of 3-5 years was what I found.  YIKES.  I am about 6 months into my diagnosis and have spent significant time learning about IPF.  I have come to understand that the 3-5 year life expectancy is very dated information, PHEW.  Knowledge has really helped me deal with IPF, and I have commited myself to doing everything I can to delay its effect on my day to day life.  Good luck on your journey, these forums are an outstanding source of information.  And when you get the blues, it is a great place to come for inspiration to move forward.
      Pete

    • #25900
      Jay
      Participant

      Hi,

      The primary care physician sent me a message that the scan looked normal. My pulmonologist wants me to forward him the report which I will do once I have it. He said primary care doctors miss stuff all the time. My question is are primary care physicians wrong often when it comes to reading and interrupting these scans ? Is pulmonary fibrosis obvious in a CT scan or does a biopsy have to be performed.

      His Message:

      Hello Jay,  I reviewed the results of your CT scan and I have good news that it shows no signs of any pulmonary embolism, no sign of any lung masses, and no sign of any inflammation. For now you can finish the prednisone, and use the inhaler as needed

       

       

    • #25902
      Mark Koziol
      Keymaster

      Hello Jay, I truly hope your primary care physician is correct. Also, the scans are are also read by a radiologist. Fingers are crossed. Take care, Mark

    • #25931

      @jayrom0807

      Hi Jay,

      I think you’re right in forwarding the full report to a pulmonologist. Not that your primary physician doesn’t know what he/she is doing, but oftentimes they aren’t super families with interstitial lung disease (ILDs) or PF in particular, so the pulmonologist will be able to interpret the scans better for you. My GP wasn’t wrong in requesting I go for a HRCT but even he admitted he was grateful to have a pulmonologist review it. I’m glad you’re doing that, please let us know how it goes. I’ll be thinking of you!

      Charlene.

    • #25943
      Jay
      Participant

      Hi,

      The pulmonologist just wanted the final report. He didn’t look over the scans but I did send him a few photos of the scans. He scheduled me for a breathing test. I’m still concerned because I’ve seen zero improvement in my shortness of breathe. I’m still feeling very run down. My throat always hurts and sometimes it feels like it’s closing up on me. I’m not sure if any of you have felt this way. I feel like no matter what I do I can’t seem to catch a full breathe. It also hurts to laugh and sneeze at the top of my chest.

    • #25952

      Hi Jay,

      I’m glad you sent him a few photos of the scans. If you asked him to, would he review them along with the final report? Your breathing test will hopefully reveal some information, as I know how scary (and awful!) it is to feel short of breath. Did this come on suddenly? If so, is there any chance it could be an acute issue, like a stubborn viral or bacterial infection or something? I’m sure they have investigated this, but I’ve not heard of a sore throat accompanying breathlessness due to IPF/PF. That said, I am not a doctor and certainly am not qualified to give any formal advice on that. Make sure they keep an eye on your 02 saturations when you do the breathing test, and can you ask for an HRCT (or was this what you had, with contrast?) for more information? Keep us posted, I will be thinking of you!
      Charlene.

    • #25959
      Maka Rebagliati
      Participant

      This is the first time I write something but I have been reading the news for a long time.
      My husband was diagnosed with IPF by chance several years ago, they did an x-ray for something else and they discovered he had IPF.  He was taking Esbriet which worked very well until this year, now he is taking Ofev and he is on supplemental oxygen 24/7 since August. However as soon as he moves from one room to the next he goes out of breath and he coughs violently. The last time he saw the pulmonologist (I was not allowed in because of covid) he got a prescription for a cough syrup which really does not help. He has now been referred to the Interstitial Lung Disease clinic at Toronto General Hospital, to get the initial appointment will take several months, as most medical  appointments in Ontario, Canada. I am very scared because I do not know at what stage of the disease he is. What can happen when he starts coughing so much? Sometimes he vomits from so much coughing and he already eats very little. Anybody is going through the same? Thanks
      Maka Rebagliati

    • #25960
      Jay
      Participant

      Hi,

      Yes they did a high resolution scan with and without contrast. I was hoping it was a virus or something that would show up on a scan but according to the radiologist there is nothing there. There are about 80-100 photos in the report. When I went to the ER 12 days prior to the CT they said that they found mild bronchitis on the chest X-Ray .They gave me steroids and antibiotics. I took them. I’m not sure what to do. I’m 26 but I feel 70. I feel so run down and out of breathe. No offense to anyone here.

    • #25965
      Joy Hoffmann
      Participant

      I find staying positive and calm helps so much.
      I will have my first breathing test since being diagnosed in March and have been on OLEV since that time with no side effects.
      My tests are at the end of Nov  and I am very nervous about it.I am a young  82 year old so pretty much have lived a wonderful long and healthy life. At this point all I can say is keep busy , eat  healthy and try to stay positive. Hope is on the way , it is said , possibly in 2023.

       

    • #25967
      Jackie Kalina
      Participant

      HiJay, I am anxious to hear if you got your questions answered. In your case, I think NO news is good news. I went in because of chest pain and within 48 hours after an ex-ray and CT scan, they told me my diagnosis, which was IPF. You are so young. Upon reading about lung diseases and also watching Utube, I found there are over 200 types of lung diseases. Don’t give up hope. I went to my personal doctor’s recommended pulmonologist and was not happy with him at all. Did some research and found a new doctor that specialized in IPF. What a difference, just in attitude. Keep searching for the most knowledgeable doctor. Contact the closest university hospital. I looked up UClA, and for me, it was too far to travel. I found a doctor who had been there for years as their director in lung disease. He is in my area. He’s now my doctor and got me started on meds right away. Good luck to you. I think you should stay positive.

    • #25979

      Hi Jay,

      Thank you for writing and providing that update and I’m so sorry you’ve gone through this ring-around! I was 28 when I was diagnosed, and the process of getting a diagnosis took 13 months for me, because the doctors were convinced it couldn’t be IPF (due to my age) despite presenting like it. Keep going with your gut if you feel something isn’t right. When is your appointment with the pulmonologist? I’ll be thinking of you and please feel free to connect with us any time, I know having symptoms but being told nothing is showing up on scans can be so frustrating. Have you done a 6 minute walk test using an 02 oximeter?

    • #25980

      @joye

      Thank you so much for sharing with us how you cope with this disease, excellent strategies and I have no doubt that others will benefit from your experience. Here’s hoping a change to the current state of the world is coming soon to give us more hope! Take good care, Charlene. 🙂

    • #26012
      Joy Barney
      Participant

      Hi Jay,

      I know this is a very scary time.  The unknown is so horrible.  Like most others have said, diagnosis takes a long time.  I was spinning for 8 months until I found a rheumatologist (turns out my PF is caused my an autoimmune disease) who began to drive my care.  He insisted on all the detailed tests again and additional ones like a cardiac catheterization and full assessment at UC San Francisco (5 hour drive from my house).  Having a doctor as an advocate also gets you in to an appointment sooner.  Keep looking to make sure some who cares is “driving your care” and not letting you slip through the cracks.  This site really helped me understand the variety of conditions, treatment and resources out there for people like us!

    • #26023
      David Ota
      Participant

      @jayrom0807

      Jay

      I read your post and I really feel for you.  The unknown is a massively scary place.  I was diagnosed with IPF (Idiopathic Pulmonary Fibrosis) which is short hand for “I don’t know why your lung are turning into scar tissue.  At that time there was no treatment and the diagnosis was an estimated 3-5 years mean time to failure.  I was, in essence ‘waiting to die’.  Very upsetting.  After the tears and going through numerous tests and what ever stages of grief I could muster the energy for, I decided ‘waiting to die’ was a poor plan.  After all the doctor visits, and a solid diagnosis, I decided that I need to do something, just for my own sanity.  I talked to my pulmonologist and went to clinicaltrials.gov and found a stage 3 trial near me.  That was 9+ years and a lung transplant ago.  I’m still working, driving, hiding from Covid-19, same as the rest of the population.  I’ve watch both my kids graduate high school and college.

      I believe being scared of the unknown is natural, as well as being depressed with such a crappy diagnosis is a sane response.  I know ‘waiting to die’ is not how I handled it.  On a larger stage, everyone born is waiting to die.  The fun I’ve had between the ‘born’ and the ‘dead’ part is what keeps me doing what I do.  I know in my heart, this will all end some day.  If I believed the ‘3-5 years’ MTF 9 years ago, I would have missed out on a lot of good times.  My lung transplant has about a 5-10 year life span, and I’m into year 4 with chronic rejection.  I’m still ‘waiting to die’, but I’m still having fun.  No one knows how much time they have left, but I know ‘waiting to die’ in no fun, and ‘going to Aruba’ is fun.  So I’ve been to Aruba 5 times in the last 9 years while I’ve been waiting.  That’s just how I see thing, I understand there are many different ways to handle stress, fear, and the unknown.  I tell my kids, remember to have fun, it’s important.

      • This reply was modified 3 weeks, 5 days ago by Mark Koziol.
      • This reply was modified 3 weeks, 5 days ago by Charlene Marshall. Reason: tagging
    • #26056

      Hi Maka,

      Thanks for writing to us, and I’m so sorry for the delay in getting back to you. I’m glad you’ve been with us for awhile!

      So sorry to hear the struggles your husband is facing due to his IPF diagnosis. This disease is so cruel! I’m trying to think of other suggestions that might help reduce the violent cough, as we talk about that a lot on the forums. My best suggestion is to go to the PF forums homepage (https://pulmonaryfibrosisnews.com/forums/) and type in “cough” or “cough suppressant” in the search bar at the top right-hand side of the page. This will reveal conversations we’ve had about this topic, and you might find some helpful stuff in there. I know cough syrups have been discussed, like you’re already trying, or lozenge’s and some other natural remedies. I hope some information in there is helpful for you!  Do you also monitor his oxygen saturations when he coughs so violently? It might be worth it to start tracking them/writing them down to bring them to the doctor when you go, just an idea. Seeing the numbers sometimes helps convey what you’re telling them.

      Hang in there and write anytime!
      Charlene.

       

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