Living with Pulmonary Fibrosis (sometimes): Finding strength

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

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.

@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.

@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.

@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.

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,

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!