Living with Pulmonary Fibrosis (sometimes): Finding strength

Posted by HARRY SMITH @francko, Dec 7, 2017

Sometimes you look around at all the things that you have been blessed with. Sometimes you lower your head when no one is there and you cry i think that this perfectly normal reactions for what we are going thru and if you are a real man you will be able to cry.. i keep trying to accept the outcome and i have to say some days are better then others i keep praying to the big guy above to please give me the strength to go on,but i know after joining this group it does me good to have someone to talk to (SOME TIMES) P.S. Please open your heart and post back and tell us some of your feelings FRANCKO

@ppeschke

I was recently diagnosed with interstitial lung disease after 2 hospital stays with pneumonia only 1 month apart and an initial diagnosis of heart failure and COPD. I am only 49 years old and my health is failing quickly. I have a lot of difficulty just breathing and getting through day to day.

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I was originally diagnosed with Congestive Heart Failure and COPD but over the last 10 years have been going to specialists for all of the issues I have now. It wasn’t until I had pneumonia the 2nd time that they finally started digging for answers. I have 2 of the best cardiologists and pulmonologist available to me and I love I’m a city where we have an amazing hospital with a top both heart hospital.

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i was diagnosed with IPF in 2009. I have had a slow progression but lately it seems to be going down hill faster. I know what the outcome is going to be but i have done all i can to slow it down. There has been a lot of research on IPF in the last year with some promising results. I spend as much time with my family as i can. I have a 16 month grandson that i love and spend a couple days a week with him, he and I are good friends and i love him dearly. I am thankful for the time i spend with him and look forward to the time i spend with him. I try not to dwell on what i will miss as he grows up and concentrate on what i get to experience with him. My advice to others is to try what you can to extend the time you have. Be careful to avoid advice that is unproven and work with your doctors. Explore research studies that deal with our disease. you can find studies at clinical trails.gov is the official gov database of studies and you can look up for free.I thank my wife of over 40 years for all the things she does to help me. she is a retired RN and sees to it that i take my medications as i am suppose to. I could not go thru this without her help and love.

Liked by Lisa Lucier

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Franco,
Have you ruled out a Lung Transplant at this time?
I think it is worth a visit to the transplants center nearest to you.
I have had Pulmonary Fibrosis since 2013. I was having a deep dry cough for a while, I made a time to see my primary care and she listened and said it would be best for me to see a specialist in the Chest Med and the fellow sent me for the first CT scan of the Chest. When the Chest Med Doc studying to become a pulmonologist. All he and the attending were concerned about were several small nodules in the outer area of my lungs.
Their biopsy was inconclusive. They rescheduled me for a new CT scan and it had not changed, the fellow pointed out the same spots then scheduled me for a second biopsy and it too was inconclusive After that biopsy he scheduled me for another CT scan and after they looked at the biopsy taken this time the results where negative (benign) but they wanted to take another biopsy, this one a semi open chest. I was not going to have a return trip to get my Chest even more involved than the last ( it was s crio biopsy. So I did something on a spur of the moment act, whitch was to go to records and request all of my VA medical records.
It took about 10 weeks to arrive and I began to read from the beginning. What I was seeing was everything I had ever had checked out. I read nothing unusual until I was at early 2014. I read the Radiologist report and it read that I had some fibrosis in my lungs. I, at the time thought that there was nothing to the early diagnosis except maybe some kind of unhappy.what followed was more of the same thing, except the were getting progressively worse. With the 3rd CT scan taken in early March of 2027. I looked up what that was.there were 2 words that I looked up were fibrosis and Pulminary. They were not good. I found out there was not a cure. Except a Lung Transplant. But even more of a troubling problem for me was why hadn’t even told me anything about having that very bad disease that was going to kill me. Unless I could still have a Lung Transplant.
Next step is to meat with the VA Chest Med clinic and seeing what they can do about the delayed (by over 3 years from the first CTscan) treatment can still be done and what they can do to help me after the surgery and with this much weakness. I doubt I will ever be back and able to do what I did before my P F. We will see what options I have left.
Wow did I ever give you and anyone else the scoop.
Alan Cady
PS. I have the recording of the representative of the Chest Med telling me that the head of the pulmonary clinic was sorry thy dropped the ball. That tells me that they are good people and want to help. I meet them in 2weekd.

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I feel for you …. if you had known you could have got on the donor list for lungs since they are always in short supply. There years on the list you might have had new ones by now. But keep following your disease and medical records , test, etc. You are your best advocate. I know they medical community cares but they have there hands full to and things can slip through the cracks. For me I think I may be sliding into end stage copd with emphysema but I have a 12 year old I want to see graduate from HS (hope college) so in the interim I keep trying move as much as possible, keep looking for “real” stem cell studies that I might get into (although I have a few other thinks going on which would probably rule me out). The problem is Big Pharma i do believe …it is much more profitable to treat rather than cure. Even though universities do some research big pharma also makes contributions to keep them a little sidetracked.
I wish you the best of luck and a Merry Christmas and Great New year!!! Breathe easy.

Liked by Lisa Lucier

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@bb729

I feel for you …. if you had known you could have got on the donor list for lungs since they are always in short supply. There years on the list you might have had new ones by now. But keep following your disease and medical records , test, etc. You are your best advocate. I know they medical community cares but they have there hands full to and things can slip through the cracks. For me I think I may be sliding into end stage copd with emphysema but I have a 12 year old I want to see graduate from HS (hope college) so in the interim I keep trying move as much as possible, keep looking for “real” stem cell studies that I might get into (although I have a few other thinks going on which would probably rule me out). The problem is Big Pharma i do believe …it is much more profitable to treat rather than cure. Even though universities do some research big pharma also makes contributions to keep them a little sidetracked.
I wish you the best of luck and a Merry Christmas and Great New year!!! Breathe easy.

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I would kike to thank for your nice reply. It is a shame but it is so true about Big Pharma some times i wonder if they have familes that may be treated like everyone else i believe in KARMA and what you plant today you shall reap tomorrow. I hope that any one or company is doing this to people that truly need help with this awful diease that they can sleep well

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I hope that everyone will have a better start to the end this year than last year. I do have people I know that are doing great after a single or double lung Transplant. That should give many of you a good feeling for the possibilities. Alan

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@bb729

I feel for you …. if you had known you could have got on the donor list for lungs since they are always in short supply. There years on the list you might have had new ones by now. But keep following your disease and medical records , test, etc. You are your best advocate. I know they medical community cares but they have there hands full to and things can slip through the cracks. For me I think I may be sliding into end stage copd with emphysema but I have a 12 year old I want to see graduate from HS (hope college) so in the interim I keep trying move as much as possible, keep looking for “real” stem cell studies that I might get into (although I have a few other thinks going on which would probably rule me out). The problem is Big Pharma i do believe …it is much more profitable to treat rather than cure. Even though universities do some research big pharma also makes contributions to keep them a little sidetracked.
I wish you the best of luck and a Merry Christmas and Great New year!!! Breathe easy.

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Sorry to chime in… I work for big pharma and have spent my career researching various diseases and possible treatments. I assure you there is no one hiding cures in place of treatments. We work hard every day trying to discover new biomarkers, designing safe drugs and testing them to make sure they work better than currently available treatments. It’s a long and way more complicated process than the general public realizes. Yes, we have families and my dad suffered from a severe brain injury for 12 years (I was 18yo and he died 4 years ago when I was 30). The first 8 years of my career, I researched drugs for dementia and memory loss. If there was ANYTHING I could have done or my colleagues would have done to help my dad, I certainly would not have hid it. And, I myself, suffer from bleb disease, have had 7 spontaneous pneumothoraces, VATS surgery on both lungs, 2 hip surgeries and now my mitral valve is degenerating. While I’m now in immunology and dermatology, I work alongside my colleagues researching fibrosis of the liver and lungs. They are also not hiding or preventing cures, but rather trying to better understand the mechanisms involved in fibrosis and ways of treating and/or reversing it. Feel free to ask questions if you have them. I hope I calmed your worries. We want to find cures and treatments just as badly as the patients who need those treatments and cures. I’m a patient right along with you so hopefully we all have efficacious treatments available to us soon.

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@bb729

I feel for you …. if you had known you could have got on the donor list for lungs since they are always in short supply. There years on the list you might have had new ones by now. But keep following your disease and medical records , test, etc. You are your best advocate. I know they medical community cares but they have there hands full to and things can slip through the cracks. For me I think I may be sliding into end stage copd with emphysema but I have a 12 year old I want to see graduate from HS (hope college) so in the interim I keep trying move as much as possible, keep looking for “real” stem cell studies that I might get into (although I have a few other thinks going on which would probably rule me out). The problem is Big Pharma i do believe …it is much more profitable to treat rather than cure. Even though universities do some research big pharma also makes contributions to keep them a little sidetracked.
I wish you the best of luck and a Merry Christmas and Great New year!!! Breathe easy.

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@lazyironman What a name! Anyway,I respond to your input, and am glad to see you popped in here. I have a serious mutation, or several mutations (probably AL, ACys, AGel, etc), of Amyloidosis. Over the past 60 years (I am 77 now) I have learned that there are people in every industry we can and must trust, and some we cannot and must not trust. If we are so blind as to not recognize our own responsibilities here, we probably deserve what we get. There is an old saying, “Fool me once, shame on you. Fool me twice, shame on me.” I have seen about 60 doctors, plus hundreds of nurses, techs, etc., over the years. Only 2 or 3 of them could even recognize the word, Amyloidosis. My biggest handicap is that I tend to trust almost everyone, and end up getting scammed, not by big pharma, but by doctors who seemed finally to only care about how much money they could make by giving a non-sensical dX or how much their egos would be damaged if they called Mayo or Boston or City of Hope for dX clues. If they are unwilling to learn about Amy from me, the educated patient, I try to not let the door hit me in the butt on the way out. Never have I had to struggle to get ALNYLAM or Bindings or the other Big Pharmas to talk to my doctor, but the reverse is nearly always true, especially between MD and Big Clinic.

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@bb729

I feel for you …. if you had known you could have got on the donor list for lungs since they are always in short supply. There years on the list you might have had new ones by now. But keep following your disease and medical records , test, etc. You are your best advocate. I know they medical community cares but they have there hands full to and things can slip through the cracks. For me I think I may be sliding into end stage copd with emphysema but I have a 12 year old I want to see graduate from HS (hope college) so in the interim I keep trying move as much as possible, keep looking for “real” stem cell studies that I might get into (although I have a few other thinks going on which would probably rule me out). The problem is Big Pharma i do believe …it is much more profitable to treat rather than cure. Even though universities do some research big pharma also makes contributions to keep them a little sidetracked.
I wish you the best of luck and a Merry Christmas and Great New year!!! Breathe easy.

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@oldkarl I agree with you 100% about doctors, nurses, etc. I’m excited for my first visit to Mayo next week and hope I’m not disappointed. I’ve heard their approach is very different than other hospital systems and it has to be otherwise I will get nowhere as I have here in Chicago. Only people with rare medical issues/diagnoses, can understand the frustration of our medical system. Similarly to you, I’ve wasted a lot of time and money on doctors that are clueless. I don’t think I’ve had any intentionally scam me, but I’ve had my fair share tell me they have no idea how to help me.

Sorry to hear about your Amyloidosis. I’m familiar with amyloid and it’s role in cognitive decline but not with it’s systemic affects – sounds like a challenging condition. I’m only 34, so I haven’t been dealing with the medical community as long as you, but I’ve realized as well, that we are often more educated on our conditions than the doctors we see. As the saying goes, they are trained to look for horses, not zebras so anyone that doesn’t fit into a nice diagnostic box is left to be their own diagnostician.

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@bb729

I feel for you …. if you had known you could have got on the donor list for lungs since they are always in short supply. There years on the list you might have had new ones by now. But keep following your disease and medical records , test, etc. You are your best advocate. I know they medical community cares but they have there hands full to and things can slip through the cracks. For me I think I may be sliding into end stage copd with emphysema but I have a 12 year old I want to see graduate from HS (hope college) so in the interim I keep trying move as much as possible, keep looking for “real” stem cell studies that I might get into (although I have a few other thinks going on which would probably rule me out). The problem is Big Pharma i do believe …it is much more profitable to treat rather than cure. Even though universities do some research big pharma also makes contributions to keep them a little sidetracked.
I wish you the best of luck and a Merry Christmas and Great New year!!! Breathe easy.

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@lazyironman You have it right, my friend. I think the major problems I have had with Mayo are because I went to Arizona rather than Minn. They did not quite have their expansion act together, including money, diagnosis, rare diseases, etc. They should get better.

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Frankco: Your emotions are nothing to be ashamed of, we all feel helpless at sometime or another. I was at the brink of life and could not breathe after lung cancer and lung surgery. My husband had to stand by my side and say, breath, breathe, breathe, for 5 hours. Moments like this are extremely difficult for all
who witness us in such distress. It is difficult to see our loved ones in distress. Furthermore, who knows how anyone will handle such emotional events in
life? I commend you for your faith and reaching out to the big guy, it has certainly helped me. Bravo to you. My lung disease became my blessing. Crazy to say, but true. In part it was the Paced Breathing Program now referred to as SMART by Dr Amit Sood at Mayo Clinic. This program was given to me when I was at the brink of life, it helped 'me' focus on my Mind, Spirit and Body…and perhaps most important it told me how to relax my nervous system. Now, how
many people can explain that process?
Mindfulness for me has become a way to breathe through the difficult times weather physically or mentally and realize I am blessed to wake up each day and enjoy the little things, and the rewards of being grateful and sending silent blessings when no one even knows what I am doing. We are not alone, you are not alone. so take any kind of breath and know that you do have people thinking and praying for you and with you. Bless you. Thank you for having the courage to share your feelings. Now that takes a brave man! You deserve a cyber hug,

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@rayhastings

The first thing you need to do is to see a pulmonary specialist. you need to get an accurate diagnosis. You may need to start using additional oxygen. let us know how you are doing.

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Bravo for consulting Mayo Clinic. Bravo to you for quitting smoking! Sounds like you doing everything you can with a positive attitude. Doctors all say Attitude is 50% of the battle. In the man time look up "Stress Free Living" by Dr Amit Sood…it helped me breathe better!

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