[nina-merendino]

I had my cataracts removed with no problems. I have now issues with my retina with appointment tomorrow. I have ankylosis spondylitis which can cause problem with retina. I am now noticing a weird change in eye site. Get a second opinion!

[nina-merendino]

No

[nina-merendino]

I was diagnosed 4 years ago due to Md thinking I had pneumonia . One doctor gave me 5 years. It’s not true cuz I have no symptoms.!!! Changed doctors and still no symptoms. Open up to self healing! Meditate daily. I am having more blowing tests but after changing pulmonologist he said there is no way I can tell how long! Don’t believe the crap and enjoy your life! If these tests come back ok I am going to say “ see you when I start a cough or sob!!!!! Nina????

[nina-merendino]

I was diagnosed with interstitial lung disease in 2018 and they did a endoscopy and found out that I had acid reflux as well. I have I have been put on oprazalam and doing fine. I have had acid reflux many times over my 69 years. Don’t think it caused the fibrosis.

[nina-merendino]

I just bought one on Amazon. Going to start using it. No need for prescription!

[nina-merendino]

Me too! I have changed to third pulmonologist cuz the first two said I had max of 5 years and I felt like a s specimen! No lung transplants for me. I am 69 and really am not afraid of dying!

[nina-merendino]

Thank you all!

[nina-merendino]

Thank all of you for sharing! My primary care doctor thought I had pneumonia and I had chest X-ray. But no pneumonia but ordered a Cat Scan which indicated pulmonary fibrosis. I have had pulmonary blowing tests of course. But when I found out I refinanced my house to put in a swim spa. Best thing I have ever done! Had lung biopsy thru my trachea and just ground glass and opacities. Have acid reflux. I have ankylosis spondylitis which the doctor thinks may be the cause of the fibrosis. I can’t walk a half a block without incredible pain but in the spa I do everything I can’t do out of water. My latest tests came back normal except for diffusion? So I am not on any meds yet except for tons for AS! I just try to not think about dying soon but I guess it’s better that I know.. I am 69 and feel like I am living in a 100 year old body! I should be a mermaid!

[nina-merendino]

Being a mental health therapist myself in private practice now for 15 years and 42 years as a psych nurse and a licensed mental health counselor I feel that anyone whatever age with a chronic illness or debilitating illness needs to live as they say in the moment. When I was first diagnosed in 2018 with interstitial lung disease or what they said was IPF, of course I was very upset because I had no symptoms at all. The first the first pulmonologist said that I had to have a lung biopsy on the operating table, then I had to quit smoking and that was about it. I went and saw the thoracic surgeon and he said you don’t have lung cancer but we think you should have a VAT. I’m sure you all know what that is. However my father was a famous thoracic it open heart surgeon and I did not want to get an operating table because there’s always a chance you can die. So I refused and then I decided to go to the University of Washington to the Interstial Lung Clinic and had even more trouble. Of course I had the breathing test and all the other nonsense as well as Broncoscopy with taking long tissue out and also that device that measures acid in your stomach that you wear for 24 hours. It seem like my doctor wanted me to have pulmonary fibrosis. I am not kidding. I also have fibromyalgia and anchylosis spondylitis which causes me pain all the time, I don’t sleep well, but when I found out in 2018 that both of my lungs were fibroid that they had ground glass and opacities , which I never would’ve known if I if my doctor hasn’t thought I had pneumonia. There are days that I wish she’d never gone that chest x-ray and other days when I guess I am glad. However they took a great toll on me in terms of thinking about dying just about every day. I live alone used to be incredibly active, dancer still and seeing my clients but I decided after I asked my dogs RTW how long I had left to live, and he said he’ll probably last until 2026 then I decided it’s time for another doctor. Who could possibly know the year you’re going to die ? Did you thousand 18 when I found out that I had interstitial lung disease decided to refinance my house and put in Swim Spa. It was the best thing I have ever done for myself in my life. I work out aerobically in the pool without pain every day, Swim, and ever since I bought the Swim Spa and had a new pulmonologist at Swedish hospital, who told me he has no idea how long I have to live because there’s so much research being done etc., that he just said Nina live your life! And this was after having the pulmonary breathing test again and actually I’m normal . I think a great deal has to do with the fact that I am breathing and swimming all the time at least every day for at least 30 minutes. He also thinks that even though I was a smoker for 40 years so this is not caused by my smoking but from the anchylosis spondylitis which is a rheumatoid disease. So now I’m waiting to get on another biologic which I don’t look forward to to see if that will slow down or stop the fibrosis in my lungs. So my new Doctor Who was trained by the University of Washington doctor said I don’t have pulmonary fibrosis or IPF but I’d interstitial lung disease whatever that means. So in terms of having his chronic may be fatal disease I’ve totally changed my outlook on life . I am less aware of how my lungs feel or worrying about my lungs I just do the best that I can every day and that’s it. I work out in the garden I just do everything I possibly can and I think that’s how all we should live especially those with chronic illnesses and I have three. I don’t feel sorry for myself I’m gonna be 69 in a couple of weeks and I’m grateful for the life I’ve had even though it wasn’t the life I’ve necessarily dreamed of. I guess because I have listen to so many horror stories of adults and their childhood and how it’s a fact that I’m on grateful that I escaped so many possible things have happened to other people. So I guess I just tell my clients you do have chronic illnesses to just keep on going and if they can’t go then rest but don’t berate yourself if you can’t there are days when I am extremely tired and I need to take a couple of naps other days when I feel like I don’t have that disease and I can actually walk through Walmart . So I guess I’m just telling all of you to be grateful you never know when research will bring a cure for those that have gone through long transplants you’re braver than I am because I just never would do it. I think my two sons who are 39 and 32 are feeling much better because I am feeling much better about my life . If you have children you don’t want to worry them and because I have the wrong lives and they shouldn’t have to worry about their mother they already lost their father. So that’s it, Nina

[nina-merendino]

I would frankly ignore it! I was found to have pulmonary fibrosis Amin 2018 and still have no symptoms but my lungs are fibroid and have all the stuff. I changed doctors 3 times and my new Md is fabulous. My breathing scores have improved and are normal as of Wednesday! He old me to live my life! Am not on any of those meds. Find another opinion! I am. Nurse and for 4 years my life has been miserable! I feel fine so just go for it and I would not start those meds! There is new stuff coming out everyday. Enjoy your trip!! Nina

[nina-merendino]

I can’t believe that there is not a pulmonologist following your husband. I don’t live in England what is the US but I was diagnosed in 2018 and still don’t have any symptoms like shortness of breath or cough or loss of weight. They initially did an x-ray thinking I had pneumonia but found that there was other things in my lungs and that’s when I did a CAT scan which showed Phibro fibrosis in both lower lungs as well as honeycombing and I think Decarla opacities. I had multiple test there after which included Broncoscopy with a biopsy of my lung also a test to see if I had Gerd GER de which I do when I put down a metal detector down through your nose into your stomach for 24 hours. I am very lucky so far because my oxygen levels are still normal but my chest is slowly getting worse. Frankly I wouldn’t even though I have this disease if it weren’t for the guys decide to do the x-ray of my chest. So they don’t know if I have IPF or UIP but now since I change pulmonologist he is saying that he really doesn’t make a difference now with terms of antibiotic medication. It’s very interesting to me that they say that oh you have 3 to 5 years one in fact into thousand 18 my chest was full of the stuff so I didn’t come all at once it must’ve been going on for years. I have a Ankylosis spondylitis say sake probably is contributing to this. All I can say is your day your husband needs to see a doctor and you should also have what we call in the states palliative care. Here it is free where you take him in and check on you etc. I also help you with making decisions of what’s best. I also suggested your husband get on antidepressant if he has never been on one before because when one is depressed one can’t think clearly people don’t enjoy the normal things they used to their sleep is disturbed so I would suggest that he see a nurse practitioner or psychiatrist. It may make a big difference in his appetite and in general health. I guess I can’t imagine my phone I’ll just saying I’m not gonna see you anymore. That’s crazy

[nina-merendino]

I have had a lung biopsy through my traechea where they took samples. Doctor still cant decide if I have IPF or UIP. I have no symtoms yet like cough or shortness of breath. I have ankylosis spondilitis, and fibromialgy. I had the test that goes through your nose and diagnoses GERD which I have. He still wants me to have a VAT? lung biopsy but frankly I don’t see doing yet with no symtoms. I swim and do water aerobic 30 minutes a day. My O2 is normal. So what do you ALL THINK?

[nina-merendino]

I just finished reading a lot I love PF patients Like myself and I’ve had similar experiences with different pulmonologists!I was diagnosed with all the fibrosis in 2018 after having a chest x-ray to see if I had pneumonia after I had two bouts. with bronchitis. The first one wanted me to have a long biopsy on the operating table which I did not want. I have no symptoms no cough no shortness of breath where they still want me to do it and I said no. Of course my CT scan shows honeycombing me both lungs fibroids they have discovered mold in my lungs from not changing my filter in my furnace and Ground glass as well as opacities. I decided to go to the University of Washington to the Director of the interstitial lung clinic, Who treated me like I was his new research specimen. I had a lung biopsy through my trachea, I had a wire put through my nose into my stomach to see if I had Gerd, which I do. He told me I had four or five years left to live and that was so depressing, like we are doing research and maybe will find a drug that cures this, and then again wanted me to do a biopsy on the operating table. Well my father was a thoracic surgeon and said whenever you get an operating table there’s a chance one could die. What I have done since 2018 is refinance my house and put in Swim Spa which is the best thing I’ve ever have done for myself. I work out aerobically every day for at least a half hour and also swim daily. Neither my CAT scan or my pulmonary testing has changed much. In fact my last pulmonary testing was better than my first pulmonary testing which was done in 2018. Now he wants me to come back in December and have another CT scan, another echocardiogram which showed my heart was fine and more pulmonary testing. He never once asked me what I did for a living I was feeling etc. so I decided I am changing to another pulmonologist. The Director of the University of Washington immediately pooh-poohed the use of WEI products.Whenever I have brought up any news that I have found on the site he also pooh-poohs that. So the week before I saw him two weeks ago I went to the new pulmonologist who said he couldn’t possibly tell me how long I had to live. I’ve got asked about the products from China or herbs but I am taking vitamin D now and I take the drug that was suggest that I can’t think of the name of it daily that has been shown to help. All I know right now is that I am very grateful to have found this site and I read it daily. When I would leave the Director of the interstitial lung clinic at the University of Washington I would cry most of the week. I even went to the store and got a pack of cigarettes LOL. So I am starting a new journey with a pulmonologist Who is very kind and compassionate and knowledgeable add took care of my sister-in-law until she died last year over 10 years with I believe COPD then pulmonary fibrosis and eventually pulmonary hypertension. Anyway I love all this news about what to try and I find it interesting that doctors nowadays push pharmaceuticals, they must have a lot of stock in them. Sincerely Nina He also said Wei Institute was a scam!

[nina-merendino]

I had bronchitis  in 2018 and doctor ordered X-ray looking for pneumonia. Instead my chest was abnormal and had cat scan which showed both Owen lungs fibroid and ground glass and opacities. Then I had pulmonary blowing tests and were a little less than normal. No one told me it was a fatal illness. Then they said come back in a year. Did tests again and cat scan showed more inflammation honeycombing and they wanted me to have a lung biopsy. I was shocked and said no after seeing the thoracic surgeon. Decided to go to UW interstitial lung clinic and requested to see the director. He is a pulmonologist and a professor. I had tests again and chest more inflammation but pulmonary tests better and normal. I stilll have no could or sob.. I refinanced my house to put in a swim spa and I had been doing aqua aerobics everyday since November of 2020. Since then he ordered lung biopsy via thru my throat into lungs which showed mold. Then he did the gerd test theu my esophagus and I have gerd. I have another scan this month and pulmonary tests snd he wants me to do lung biopsy thru VAT. I went for second opinion and this guy explained every result. I have rheumatoid arthritis so he thinks I should have the biopsy to see mote I guess IPF vs. UIP but believes this damage in my lungs is due to rheumatoid disease and so I am changing doctors for rheumatologist to get more aggressive. He thinks the swimming and exercise is playing a good role cuz last pulmonary blowing was better then the last and is normal. The doctor at the U said I had maybe 5 years but I must have started this years before 2018! It is surreal when I have no symptoms and just pain in my body from fibromyalgia and rheumatoid. Wish I never had that ex ray!!

[nina-merendino]

I was diagnosed via Ct scan done in 2018 because an X-ray looking for pneumonia found fibrosis of both lungs. I was in shock and then referred to pulmonologist who said I had to stop smoking and needed a lung biopsy on the operating table and I said “ no thanks. I have no symptoms of sob or cough. Then I went to UW interstitial lung clinic to the head guy and he told me I had to have lung biopsy thru my trachea and be tested for acid reflux. I did both and do have acid reflux. He asked me if I wanted to get on lung transplant list and I said “No!” He told me I had at most 5 years to live so I told my sons hurried to get my estate and will done and then after another appointment with this doctor, I decided he was rude, gave no hope so I changed to another pulmonologist who said he couldn’t possibly tell me how long I would live!!! So with him I had more breathing tests and they were better than the first ones. I had decided I was not going to let these doctors ruin my life. I stopped smoking, but in a swim spa to work out in due to pain from another disease, and still a year later today, just finished another round of breathing tests. They are even better today! Almost normal. I see him in a few minutes but what I have learned is that 1. Read Mind over Medicine. Exercise. I have been using sucked supplements like Hatkari I think, vitamin E, and a drug on Amazon that starts with a T like Tevigo or something. I listen to regenerative music every night in bed on UTube and think positive!! No cough or sob yet. I have read many stories of living for years and years with this and others that for some horrible reason die very quickly. I just heard a story from my testers today that one of their clients was given Olef ? And now has total reversal of the disease. So find a good doctor and think positive!! For a year all I did was think about my breathing but no more. When and if I get a cough or sob I will go back but not after today! Best of luck! Nina

[nina-merendino]

I am on no meds for PF but on plenty for my ankylosis spondylitis! I am not on oxygen and am not short of breath but I will tell you I have gained 40 lbs since being diagnosed with this. I sm in constant pain in my back and now neck as my bones fuse. I finally have talked my Psych nurse pracctioner and she has started me on Metforin. I will keep you informed of the results. I hate being obese and at 55 was surfing so lie ain’t quite the same. I live by myself and I feel I look so awful that it is hard to want to go out…. No one has ever mentioned my problem with weight until my doctor at he UW wrote that I was obese. So I changd pulmonary docvctors! You have to advocate for yourself these days.

[nina-merendino]

I may have said this before but I was diagnosed in 2018. It is now 2023 and still no cough or SOB. I researched myself and take zinc and a chinese herb Teavigo on Amazon, red light therapy but don’t have the IV. I refinanced my house to put in a swim spa because I have another disease that currently is worse, called ankylosis spondylitis where my bones are growing together. I am in pain 24/7 so thats why i do aerobics and swim in my back yard. I missed my last half yearly tests but after this next one I don’t see the need to go unless i start to lose weight, am sob or cough! I wouldn’t know I even have this if it weren’t for the bronchitis. How many people are walking the planet with this and don’t know it.?? Get the book called mind over Medicine. I also due meditation every night with U tube and healing at a cellular level. Nina PS. Change doctors if they tell you 3-5 years!!! I am at 4 .

[nina-merendino]

I wish my father was alive today he lived 97 and was a fabulous and famous thoracic surgeon who did the first open-heart surgery on the West Coast. He traveled all over the world teaching people how to do heart surgery and at one point he and his team could’ve done it liver long and heart transplant all at once but he didn’t want to play God and so he was penalized for it. When my second pulmonologist told me that I need to eventually have a lung transplant he was shocked when I said I don’t wanna long transplant I’m not afraid of dying. He treated me like a special man he was the Director of the interstitial lung clean out with University of Washington . I feel like a specimen dad so I left his office and found another great pulmonologist at Swedish Hospital in Seattle. He did not agree with his mentor who was my prior pulmonologist that I had only five years left to live. He said he had an idea how long I would live that there was tons of research going on and other than the CT scan I have no symptoms no shortness of breath no cough and my blowing stuff is fine . So I wish I never knew about this diagnosis because I have an hour will and have decided to be buried at a certain place and I have two beautiful sons colossal father six years ago to another horrible I know and disease called anaplastic thyroid cancer which as a nurse I never have heard it either. What depresses me is that is my pain from the anchylosis spondylitis and my shoulder pain and my lungs don’t seem to bother me at all except for the fact that I think about him every day. I’m a psychotherapist and Hannah psychiatric nurse and I have been practicing for 42 years and I am the one that needs therapy I guess but I want to have a group work with somebody that has the same thing. It’s so nice to hear from people who have responded and I feel guilty for not even having the same trouble I guess. How crazy is that? I guess I’m the kind of person that just wants to go really fast and I don’t want to be on oxygen and tubes and all that stuff. We’re all gonna die some days is a matter of how and when. So anyway I hope everybody gets over this thing and they find a cure and a medication that works that’s all I can say thanks so much! I dictated this so there are many mistakes but it’s hard for me to move my fingers lol

[nina-merendino]

I will! Good for you!!