• Hi Everyone –

    Live in Columbus, OH area.  I am 66 years young.  I receive care at The Ohio State University Hospital.  I am not in a local support group.  I know they have some available at OSU and probably around the area.  I still do not yet have an actual diagnosis.  The doctors feel it is either IPF or NSIP. I am scheduled for a VATS biops…[Read more]

  • Charlene –

    I have an ILD.  Scheduled for a VATS biopsy to learn which one.  I like having another person present when I go to various doctors.  If my family cannot go, I have various friends who have offered to go with me and be another “set of ears”.  Lots of friends have told me to call them if I need anything.  Only indication I have is a dry…[Read more]

  • John –

    I totally understand you feeling the way you do.  I don’t yet have a definite diagnosis.  I have been doctoring since Sept 2018.  I have been through all the tests except for a VATS surgical lung biopsy – which is scheduled for May 10.  I definitely have a Interstitial Lung Disease (ILD) but they are not sure which one yet.  The doct…[Read more]

  • Marianne posted a new activity comment 1 week, 6 days ago

    Denny – Thanks for your reply. I go to Ohio State University who is one of the 3 approved places in Ohio for lung and pulmonary. I really like my pulmonary doctor and my surgeon. I started out at another area hospital but switched to OSU because they have more expertise in this area. Marianne

  • Marianne posted a new activity comment 2 weeks, 1 day ago

    Thanks much. Just set a follow up appointment with my pulmonary doctor for 2 weeks after surgery. I can usually tolerate pain pretty well so I am hopeful I will only have some discomfort. I have only been in hospital 4 times in my entire life and 2 of those were when I had my children. The other 2 times did not involve surgery just tests. I…[Read more]

  • Charlene –

    I went to Hawaii years ago when I was in my mid 20’s.  Maui is also beautiful.  Had a great time there.  I am sure it is changed much but the islands are beautiful.   Have a great vacation or holiday.   Would love to visit again sometime.  Not in the cards right now.

    Marianne

  • Marianne posted an update 2 weeks, 2 days ago

    Mark and anyone else who has had a VATS lung biopsy. How long did you have to wait to drive a car? My doctor told me I would be off work 2-3 weeks. I will not be allowed to lift anything over 5 lbs for 4 to 6 weeks. Mark – you said you had no pain at all from the surgery? Thanks for any answers. Marianne

    • I didn’t drive for about a week. I correlated my surgery with winter break as I was an educator. I was out of work for 3 weeks but only one week where I had to use my time. I had some discomfort but no pain. I am kind of unusual in that aspect as I have been told that I tolerate pain very well. I’m sure I had restrictions on lifting but I don…[Read more]

      • Thanks much. Just set a follow up appointment with my pulmonary doctor for 2 weeks after surgery. I can usually tolerate pain pretty well so I am hopeful I will only have some discomfort. I have only been in hospital 4 times in my entire life and 2 of those were when I had my children. The other 2 times did not involve surgery just tests. I…[Read more]

  • Marianne posted a new activity comment 2 weeks, 5 days ago

    Mark – Met with the surgeon today. I really liked her. She was also highly recommended by a nurse friend who personally knows her. Biopsy is scheduled for May 10 at The James at OSU.

  • Marianne posted a new activity comment 2 weeks, 6 days ago

    Mark – Talked to my pulmonologist yesterday. No infection, no cancer cells but have nodules on cartilage rings of trachea. Cardio thoracic surgeon will biopsy those when they do the lung biopsy. Meeting with surgeon tomorrow. Marianne

  • Marianne posted a new activity comment 3 weeks, 1 day ago

    Hi Mark. It’s a small world. Did not realize you were in Ohio. Are your doctors at the Cleveland Clinic? Weather here is gorgeous today. Hope you are getting warmer temperatures and sunny skies too. My nephew and his wife live in the Cleveland area. Both are medical doctors but do not practice at the Cleveland Clinic. Marianne

    • Hello Marianne, yes I go to the clinic for post transplant appointments. I see Dr. Budev who is the medical director of the lung transplant program. I love her. She’s an excellent doctor and has a wonderful bedside manner. I do live in the city of Cleveland on the west side near Fairview Park. My neighborhood is called westpark. Weather was nice h…[Read more]

      • Mark – Talked to my pulmonologist yesterday. No infection, no cancer cells but have nodules on cartilage rings of trachea. Cardio thoracic surgeon will biopsy those when they do the lung biopsy. Meeting with surgeon tomorrow. Marianne

      • Hello Marianne, that’s great news: no cancer. Stay positive regarding the biopsy. I pray there are no complications and you have a successful surgery. If you are not comfortable with your surgeon, you can always ask to meet with someone else. This is your body. You know what’s best for you and you need to feel comfortable with the surgeon. Mark

      • Mark – Met with the surgeon today. I really liked her. She was also highly recommended by a nurse friend who personally knows her. Biopsy is scheduled for May 10 at The James at OSU.

      • Hello Marianne, I’m happy you are comfortable with your surgeon. I think it goes a long way on your outlook and recovery. As I said before, the surgery for me wasn’t that bad. I didn’t experience pain and had a short two night stay. I will be thinking of you on May 10. Stay in contact. Please ask anything you would like to know about my experience. Mark

  • Marianne posted a new activity comment 3 weeks, 1 day ago

    Hi Mark – Not yet. Hoping I hear from the doctor this week. Have an appointment set for Friday morning with a cardio thoracic surgeon at OSU hospital in Columbus, OH to talk about a biopsy. I am hoping I have some answers before that appointment. I will let you know when I hear from pulmonologist. Thanks for asking. Hope you are having a good day.

    • Hello Marianne, thank you I am having a good day. You know i am right up the road. I live in Cleveland.
      I got my fingers crossed that turns out how you want it.
      mark

      • Hi Mark. It’s a small world. Did not realize you were in Ohio. Are your doctors at the Cleveland Clinic? Weather here is gorgeous today. Hope you are getting warmer temperatures and sunny skies too. My nephew and his wife live in the Cleveland area. Both are medical doctors but do not practice at the Cleveland Clinic. Marianne

        • Hello Marianne, yes I go to the clinic for post transplant appointments. I see Dr. Budev who is the medical director of the lung transplant program. I love her. She’s an excellent doctor and has a wonderful bedside manner. I do live in the city of Cleveland on the west side near Fairview Park. My neighborhood is called westpark. Weather was nice h…[Read more]

          • Mark – Talked to my pulmonologist yesterday. No infection, no cancer cells but have nodules on cartilage rings of trachea. Cardio thoracic surgeon will biopsy those when they do the lung biopsy. Meeting with surgeon tomorrow. Marianne

          • Hello Marianne, that’s great news: no cancer. Stay positive regarding the biopsy. I pray there are no complications and you have a successful surgery. If you are not comfortable with your surgeon, you can always ask to meet with someone else. This is your body. You know what’s best for you and you need to feel comfortable with the surgeon. Mark

          • Mark – Met with the surgeon today. I really liked her. She was also highly recommended by a nurse friend who personally knows her. Biopsy is scheduled for May 10 at The James at OSU.

          • Hello Marianne, I’m happy you are comfortable with your surgeon. I think it goes a long way on your outlook and recovery. As I said before, the surgery for me wasn’t that bad. I didn’t experience pain and had a short two night stay. I will be thinking of you on May 10. Stay in contact. Please ask anything you would like to know about my experience. Mark

  • Marianne posted a new activity comment 3 weeks, 4 days ago

    Had the brocholeveolar lavage test on Thursday. Still waiting on results. They are wanting to rule out an infection. They still want to do a biopsy to identify which ILD disease. I was with a different pulmonary doctor at a different hospital last fall. Basically both pulmonologists are agreeing that we are either dealing with IPF or NSIP.…[Read more]

    • Hello Marianne, have you had any results?

      • Hi Mark – Not yet. Hoping I hear from the doctor this week. Have an appointment set for Friday morning with a cardio thoracic surgeon at OSU hospital in Columbus, OH to talk about a biopsy. I am hoping I have some answers before that appointment. I will let you know when I hear from pulmonologist. Thanks for asking. Hope you are having a good day.

        • Hello Marianne, thank you I am having a good day. You know i am right up the road. I live in Cleveland.
          I got my fingers crossed that turns out how you want it.
          mark

          • Hi Mark. It’s a small world. Did not realize you were in Ohio. Are your doctors at the Cleveland Clinic? Weather here is gorgeous today. Hope you are getting warmer temperatures and sunny skies too. My nephew and his wife live in the Cleveland area. Both are medical doctors but do not practice at the Cleveland Clinic. Marianne

            • Hello Marianne, yes I go to the clinic for post transplant appointments. I see Dr. Budev who is the medical director of the lung transplant program. I love her. She’s an excellent doctor and has a wonderful bedside manner. I do live in the city of Cleveland on the west side near Fairview Park. My neighborhood is called westpark. Weather was nice h…[Read more]

              • Mark – Talked to my pulmonologist yesterday. No infection, no cancer cells but have nodules on cartilage rings of trachea. Cardio thoracic surgeon will biopsy those when they do the lung biopsy. Meeting with surgeon tomorrow. Marianne

              • Hello Marianne, that’s great news: no cancer. Stay positive regarding the biopsy. I pray there are no complications and you have a successful surgery. If you are not comfortable with your surgeon, you can always ask to meet with someone else. This is your body. You know what’s best for you and you need to feel comfortable with the surgeon. Mark

              • Mark – Met with the surgeon today. I really liked her. She was also highly recommended by a nurse friend who personally knows her. Biopsy is scheduled for May 10 at The James at OSU.

              • Hello Marianne, I’m happy you are comfortable with your surgeon. I think it goes a long way on your outlook and recovery. As I said before, the surgery for me wasn’t that bad. I didn’t experience pain and had a short two night stay. I will be thinking of you on May 10. Stay in contact. Please ask anything you would like to know about my experience. Mark

  • Marianne posted a new activity comment 4 weeks ago

    Denny – Thanks for your reply. The pulmonologist and radiologist have narrowed it down to two. The panel of pulmonologists, radiologists and pathologists at The Ohio State University Lung Clinic have decided to do a bronchoaleveolar lavage test tomorrow. I don’t fit a typical pattern. All my tests put me at probable. Pulmonologist says I am…[Read more]

    • Had the brocholeveolar lavage test on Thursday. Still waiting on results. They are wanting to rule out an infection. They still want to do a biopsy to identify which ILD disease. I was with a different pulmonary doctor at a different hospital last fall. Basically both pulmonologists are agreeing that we are either dealing with IPF or NSIP.…[Read more]

      • Hello Marianne, have you had any results?

        • Hi Mark – Not yet. Hoping I hear from the doctor this week. Have an appointment set for Friday morning with a cardio thoracic surgeon at OSU hospital in Columbus, OH to talk about a biopsy. I am hoping I have some answers before that appointment. I will let you know when I hear from pulmonologist. Thanks for asking. Hope you are having a good day.

          • Hello Marianne, thank you I am having a good day. You know i am right up the road. I live in Cleveland.
            I got my fingers crossed that turns out how you want it.
            mark

            • Hi Mark. It’s a small world. Did not realize you were in Ohio. Are your doctors at the Cleveland Clinic? Weather here is gorgeous today. Hope you are getting warmer temperatures and sunny skies too. My nephew and his wife live in the Cleveland area. Both are medical doctors but do not practice at the Cleveland Clinic. Marianne

              • Hello Marianne, yes I go to the clinic for post transplant appointments. I see Dr. Budev who is the medical director of the lung transplant program. I love her. She’s an excellent doctor and has a wonderful bedside manner. I do live in the city of Cleveland on the west side near Fairview Park. My neighborhood is called westpark. Weather was nice h…[Read more]

                • Mark – Talked to my pulmonologist yesterday. No infection, no cancer cells but have nodules on cartilage rings of trachea. Cardio thoracic surgeon will biopsy those when they do the lung biopsy. Meeting with surgeon tomorrow. Marianne

                • Hello Marianne, that’s great news: no cancer. Stay positive regarding the biopsy. I pray there are no complications and you have a successful surgery. If you are not comfortable with your surgeon, you can always ask to meet with someone else. This is your body. You know what’s best for you and you need to feel comfortable with the surgeon. Mark

                • Mark – Met with the surgeon today. I really liked her. She was also highly recommended by a nurse friend who personally knows her. Biopsy is scheduled for May 10 at The James at OSU.

                • Hello Marianne, I’m happy you are comfortable with your surgeon. I think it goes a long way on your outlook and recovery. As I said before, the surgery for me wasn’t that bad. I didn’t experience pain and had a short two night stay. I will be thinking of you on May 10. Stay in contact. Please ask anything you would like to know about my experience. Mark

    • Marianne, I went ro the Cleveland Clinic who are rated number 1 in the country on pulmonology (60 of them). I saw Brian Southern who does research 4 days a week.

      • Denny – Thanks for your reply. I go to Ohio State University who is one of the 3 approved places in Ohio for lung and pulmonary. I really like my pulmonary doctor and my surgeon. I started out at another area hospital but switched to OSU because they have more expertise in this area. Marianne

  • Marianne posted a new activity comment 1 month ago

    Hi Mark – Thanks. Just got a call earlier today from my pulmonary doctor. The team at OSU Hospital has decided to do a bronchoalveolar lavage before proceeding with a lung biopsy. So that is the next step before a VATS biopsy. I believe they are trying to rule out some type of lung infection. This is the only test left before a VATS biopsy.…[Read more]

    • Marianne, if your pulmonologist is into research he should know by the scarring pattern if it is interstitial pneumonitis. I have usual interstitial pneumonitis which has scarring around the outside and bottom. The panel of pulmonologists agreed unanimously that that is what it was and not to have a biopsy. But I do not know the difference between…[Read more]

      • Denny – Thanks for your reply. The pulmonologist and radiologist have narrowed it down to two. The panel of pulmonologists, radiologists and pathologists at The Ohio State University Lung Clinic have decided to do a bronchoaleveolar lavage test tomorrow. I don’t fit a typical pattern. All my tests put me at probable. Pulmonologist says I am…[Read more]

        • Had the brocholeveolar lavage test on Thursday. Still waiting on results. They are wanting to rule out an infection. They still want to do a biopsy to identify which ILD disease. I was with a different pulmonary doctor at a different hospital last fall. Basically both pulmonologists are agreeing that we are either dealing with IPF or NSIP.…[Read more]

          • Hello Marianne, have you had any results?

            • Hi Mark – Not yet. Hoping I hear from the doctor this week. Have an appointment set for Friday morning with a cardio thoracic surgeon at OSU hospital in Columbus, OH to talk about a biopsy. I am hoping I have some answers before that appointment. I will let you know when I hear from pulmonologist. Thanks for asking. Hope you are having a good day.

              • Hello Marianne, thank you I am having a good day. You know i am right up the road. I live in Cleveland.
                I got my fingers crossed that turns out how you want it.
                mark

                • Hi Mark. It’s a small world. Did not realize you were in Ohio. Are your doctors at the Cleveland Clinic? Weather here is gorgeous today. Hope you are getting warmer temperatures and sunny skies too. My nephew and his wife live in the Cleveland area. Both are medical doctors but do not practice at the Cleveland Clinic. Marianne

                  • Hello Marianne, yes I go to the clinic for post transplant appointments. I see Dr. Budev who is the medical director of the lung transplant program. I love her. She’s an excellent doctor and has a wonderful bedside manner. I do live in the city of Cleveland on the west side near Fairview Park. My neighborhood is called westpark. Weather was nice h…[Read more]

                    • Mark – Talked to my pulmonologist yesterday. No infection, no cancer cells but have nodules on cartilage rings of trachea. Cardio thoracic surgeon will biopsy those when they do the lung biopsy. Meeting with surgeon tomorrow. Marianne

                    • Hello Marianne, that’s great news: no cancer. Stay positive regarding the biopsy. I pray there are no complications and you have a successful surgery. If you are not comfortable with your surgeon, you can always ask to meet with someone else. This is your body. You know what’s best for you and you need to feel comfortable with the surgeon. Mark

                    • Mark – Met with the surgeon today. I really liked her. She was also highly recommended by a nurse friend who personally knows her. Biopsy is scheduled for May 10 at The James at OSU.

                    • Hello Marianne, I’m happy you are comfortable with your surgeon. I think it goes a long way on your outlook and recovery. As I said before, the surgery for me wasn’t that bad. I didn’t experience pain and had a short two night stay. I will be thinking of you on May 10. Stay in contact. Please ask anything you would like to know about my experience. Mark

        • Marianne, I went ro the Cleveland Clinic who are rated number 1 in the country on pulmonology (60 of them). I saw Brian Southern who does research 4 days a week.

          • Denny – Thanks for your reply. I go to Ohio State University who is one of the 3 approved places in Ohio for lung and pulmonary. I really like my pulmonary doctor and my surgeon. I started out at another area hospital but switched to OSU because they have more expertise in this area. Marianne

  • Has anyone tried acupuncture to help with the cough? That was recently suggested to me by my massage therapist. He did not know if it would work but thought it was worth a try. My chronic cough seems to come and go. Much worse as the day goes on. Quality of sleep at night is affected by the cough. Some nights are not bad, others not so fun.…[Read more]

  • Marianne posted a new activity comment 1 month ago

    Thanks much Mark. Doctors have not yet sure which ILD I have. They are thinking either IPF or NSIP. They want me to have a lung biopsy to see if it will tell them a specific ILD. I have been doctoring for 7 months now. Still feeling good except for the chronic cough. I have mixed feelings about the VATS biopsy. Talking to a cardio thoracic…[Read more]

    • Hello Marianne, if it makes any difference how i decided; I went with my heart. I trusted my pulmonologist and my thoracic surgeon. My Surgeon was rated highly by u.s. news and world report and he had a terrific bedside manner. I’m a guy who likes to bust chops and have fun. All his interactions were of the same, even in the operating room b…[Read more]

  • Marianne became a registered member 1 month ago

    • Hello Marianne, I would like to welcome you to your pulmonary fibrosis forum. I think you will find it a safe place to ask questions and receive information.

      • Thanks much Mark. Doctors have not yet sure which ILD I have. They are thinking either IPF or NSIP. They want me to have a lung biopsy to see if it will tell them a specific ILD. I have been doctoring for 7 months now. Still feeling good except for the chronic cough. I have mixed feelings about the VATS biopsy. Talking to a cardio thoracic…[Read more]

        • Hello Marianne, if it makes any difference how i decided; I went with my heart. I trusted my pulmonologist and my thoracic surgeon. My Surgeon was rated highly by u.s. news and world report and he had a terrific bedside manner. I’m a guy who likes to bust chops and have fun. All his interactions were of the same, even in the operating room b…[Read more]

    • Hi Mark – Thanks. Just got a call earlier today from my pulmonary doctor. The team at OSU Hospital has decided to do a bronchoalveolar lavage before proceeding with a lung biopsy. So that is the next step before a VATS biopsy. I believe they are trying to rule out some type of lung infection. This is the only test left before a VATS biopsy.…[Read more]

      • Marianne, if your pulmonologist is into research he should know by the scarring pattern if it is interstitial pneumonitis. I have usual interstitial pneumonitis which has scarring around the outside and bottom. The panel of pulmonologists agreed unanimously that that is what it was and not to have a biopsy. But I do not know the difference between…[Read more]

        • Denny – Thanks for your reply. The pulmonologist and radiologist have narrowed it down to two. The panel of pulmonologists, radiologists and pathologists at The Ohio State University Lung Clinic have decided to do a bronchoaleveolar lavage test tomorrow. I don’t fit a typical pattern. All my tests put me at probable. Pulmonologist says I am…[Read more]

          • Had the brocholeveolar lavage test on Thursday. Still waiting on results. They are wanting to rule out an infection. They still want to do a biopsy to identify which ILD disease. I was with a different pulmonary doctor at a different hospital last fall. Basically both pulmonologists are agreeing that we are either dealing with IPF or NSIP.…[Read more]

            • Hello Marianne, have you had any results?

              • Hi Mark – Not yet. Hoping I hear from the doctor this week. Have an appointment set for Friday morning with a cardio thoracic surgeon at OSU hospital in Columbus, OH to talk about a biopsy. I am hoping I have some answers before that appointment. I will let you know when I hear from pulmonologist. Thanks for asking. Hope you are having a good day.

                • Hello Marianne, thank you I am having a good day. You know i am right up the road. I live in Cleveland.
                  I got my fingers crossed that turns out how you want it.
                  mark

                  • Hi Mark. It’s a small world. Did not realize you were in Ohio. Are your doctors at the Cleveland Clinic? Weather here is gorgeous today. Hope you are getting warmer temperatures and sunny skies too. My nephew and his wife live in the Cleveland area. Both are medical doctors but do not practice at the Cleveland Clinic. Marianne

                    • Hello Marianne, yes I go to the clinic for post transplant appointments. I see Dr. Budev who is the medical director of the lung transplant program. I love her. She’s an excellent doctor and has a wonderful bedside manner. I do live in the city of Cleveland on the west side near Fairview Park. My neighborhood is called westpark. Weather was nice h…[Read more]

                      • Mark – Talked to my pulmonologist yesterday. No infection, no cancer cells but have nodules on cartilage rings of trachea. Cardio thoracic surgeon will biopsy those when they do the lung biopsy. Meeting with surgeon tomorrow. Marianne

                      • Hello Marianne, that’s great news: no cancer. Stay positive regarding the biopsy. I pray there are no complications and you have a successful surgery. If you are not comfortable with your surgeon, you can always ask to meet with someone else. This is your body. You know what’s best for you and you need to feel comfortable with the surgeon. Mark

                      • Mark – Met with the surgeon today. I really liked her. She was also highly recommended by a nurse friend who personally knows her. Biopsy is scheduled for May 10 at The James at OSU.

                      • Hello Marianne, I’m happy you are comfortable with your surgeon. I think it goes a long way on your outlook and recovery. As I said before, the surgery for me wasn’t that bad. I didn’t experience pain and had a short two night stay. I will be thinking of you on May 10. Stay in contact. Please ask anything you would like to know about my experience. Mark

          • Marianne, I went ro the Cleveland Clinic who are rated number 1 in the country on pulmonology (60 of them). I saw Brian Southern who does research 4 days a week.

            • Denny – Thanks for your reply. I go to Ohio State University who is one of the 3 approved places in Ohio for lung and pulmonary. I really like my pulmonary doctor and my surgeon. I started out at another area hospital but switched to OSU because they have more expertise in this area. Marianne

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