I just received the results of my CT scan through my patient portal email. I haven’t seen my doctor yet who ordered the scan. I have had a terrible cough for years and take a lot of prescription meds for asthma. I had pulmonary embolisms in January 2015; and had a follow up scan in July 2015. At that time, my embolisms had been absorbed. There was no mention of scarring on the report from that scan. Of course, I am freaked out by what I have read on the medical web sites. My fibrosis was listed as “mild.” I was happy to find this group.
@browneyes60, Hello and Welcome to Mayo Clinic Connect! We are happy to have you here and glad you found us too!
In my opinion, I think that's the one drag to the patient portal- reading information and not having the ability to talk with your medical professional immediately. If you are going to continue to read on medical web sites- just make sure it's a reputable source. Otherwise this may be a good time to keep yourself busy and keep your mind busy at least until you can speak with your provider and get details about your scan. Normally what happens is the scan is done then the Radiologist reads the scan, writes a report and then it's released for review. Be content knowing that your provider will call you as soon as he or she reviews your scans and report. (I know waiting is the worst)
If you don't mind, keep us informed of what your provider says. We look forward to supporting and helping you along the way. Post any questions and or thoughts you have. The wonderful thing about this community is....what ever you post here turns around to a learning experience for other future members.
That's tough when you don't get the information you need to make decision on your health. The patient portals seem to be helpful. I would be interested, if you feel comfortable saying, what your decision making process is about getting a lung transplant. It is a big decision.
I was diagnosed moderate last October at Mayo referred me to lung transplant center I’ve decided not to do that mentally I don’t think I can take the wait to see if I get an organ match on time and the wondering after if I’ll reject it I’m 54 I have had a hard life or I feel tired of fighting so I’ve decided against a transplant it’s been a year and a half since respiratory failure and the PF diagnosis with organizing pneumonia my lungs have gotten a bit more scarring and I feel crappy most of the time fighting lung infections I’m just living day by day to the fullest and looking into esbriet as a possible drug to try
I was diagnosed moderate last October at Mayo referred me to lung transplant center I’ve decided not to do that mentally I don’t think I can take the wait to see if I get an organ match on time and the wondering after if I’ll reject it I’m 54 I have had a hard life or I feel tired of fighting so I’ve decided against a transplant it’s been a year and a half since respiratory failure and the PF diagnosis with organizing pneumonia my lungs have gotten a bit more scarring and I feel crappy most of the time fighting lung infections I’m just living day by day to the fullest and looking into esbriet as a possible drug to try
I like your attitude of living day by day to the fullest. That's my intent also to make that choice of being there each day. Thank you for sharing some of your thoughts of your difficult decision about getting a lung transplant. I hope you can try the esbriet and it helps you feel better.
I was diagnosed moderate last October at Mayo referred me to lung transplant center I’ve decided not to do that mentally I don’t think I can take the wait to see if I get an organ match on time and the wondering after if I’ll reject it I’m 54 I have had a hard life or I feel tired of fighting so I’ve decided against a transplant it’s been a year and a half since respiratory failure and the PF diagnosis with organizing pneumonia my lungs have gotten a bit more scarring and I feel crappy most of the time fighting lung infections I’m just living day by day to the fullest and looking into esbriet as a possible drug to try
These comments are from back in 2016! Is there anyone out there that has recent treatments for IPF? What do you know about stem cell therapy as a relief of from this deteriorating health condition? Earl from Ohio
These comments are from back in 2016! Is there anyone out there that has recent treatments for IPF? What do you know about stem cell therapy as a relief of from this deteriorating health condition? Earl from Ohio
Harry I am new to this as well. I have had IPF for 15 months and have been taking OFEV. I just had a CT scan and it shows no advancement of the disease. I exercise regularly and am trying to reduce my weight as I am at 250 lbs. I am on oxygen when needed. The exercise is a key to maintaining as much endurance as you can. This includes weight training too. If I can answer any questions let me know and good luck.
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@browneyes60, Hello and Welcome to Mayo Clinic Connect! We are happy to have you here and glad you found us too!
In my opinion, I think that's the one drag to the patient portal- reading information and not having the ability to talk with your medical professional immediately. If you are going to continue to read on medical web sites- just make sure it's a reputable source. Otherwise this may be a good time to keep yourself busy and keep your mind busy at least until you can speak with your provider and get details about your scan. Normally what happens is the scan is done then the Radiologist reads the scan, writes a report and then it's released for review. Be content knowing that your provider will call you as soon as he or she reviews your scans and report. (I know waiting is the worst)
If you don't mind, keep us informed of what your provider says. We look forward to supporting and helping you along the way. Post any questions and or thoughts you have. The wonderful thing about this community is....what ever you post here turns around to a learning experience for other future members.
That's tough when you don't get the information you need to make decision on your health. The patient portals seem to be helpful. I would be interested, if you feel comfortable saying, what your decision making process is about getting a lung transplant. It is a big decision.
I was diagnosed moderate last October at Mayo referred me to lung transplant center I’ve decided not to do that mentally I don’t think I can take the wait to see if I get an organ match on time and the wondering after if I’ll reject it I’m 54 I have had a hard life or I feel tired of fighting so I’ve decided against a transplant it’s been a year and a half since respiratory failure and the PF diagnosis with organizing pneumonia my lungs have gotten a bit more scarring and I feel crappy most of the time fighting lung infections I’m just living day by day to the fullest and looking into esbriet as a possible drug to try
I like your attitude of living day by day to the fullest. That's my intent also to make that choice of being there each day. Thank you for sharing some of your thoughts of your difficult decision about getting a lung transplant. I hope you can try the esbriet and it helps you feel better.
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1 ReactionThank you I wish you well also
These comments are from back in 2016! Is there anyone out there that has recent treatments for IPF? What do you know about stem cell therapy as a relief of from this deteriorating health condition? Earl from Ohio
On the contrary, @robinson. Recent comments to this discussion were made just a week ago. It is an active thread. Allow me to introduce you to a few members. Please meet @oliver22 @rayhastings @agullotti @kturchin @penlee @alancady @1000016352 @1jonwilcox @tula and @11241935
You might also be interested in these discussions:
– Stem cells for Pulmonary Fibrosis: https://connect.mayoclinic.org/discussion/stem-cells-for-pulmonary-fibrosis/
– IPF and Pulmonary Rehab: https://connect.mayoclinic.org/discussion/ipf-and-pulmonary-rehab/
Robinson, we look forward to getting to know you. When were you diagnosed with IPF? How are you doing at the moment?
I WOULD LIKE TO TALK TO PEOPLE THAT HAVE PULMONARY FIBROSIS
Hi Harry (@francko),
Welcome back to Connect. I moved your message to this existing discussion group where people are talking about plumonary fibrosis. Please meet a few of the members like @oliver22 @rayhastings @robinson @kturchin @penlee @alancady and @tula
Harry, we look forward to getting to know more about you. Have you recently been diagnosed with PF or have you been living with it for a while?
Harry I am new to this as well. I have had IPF for 15 months and have been taking OFEV. I just had a CT scan and it shows no advancement of the disease. I exercise regularly and am trying to reduce my weight as I am at 250 lbs. I am on oxygen when needed. The exercise is a key to maintaining as much endurance as you can. This includes weight training too. If I can answer any questions let me know and good luck.
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