The Unexpected Positives of PF

I saw a pulmonary Dr. for the first time two weeks ago. I am 71 years old. The choice was mine to go, I figured it was time. I have been diagnosed with COPD for many years - When I saw the dr. we went over my lung xray - there is scar tissue in the bottom part of my lungs. He said it looks old. Then I go to my foot dr because I need surgery on my foot, very minor. She sends me to my primary dr. who has to do an EKG. She tells me my EKG is not normal - sends me for an echo cardiogram. Results - I have PF !! Omg - I don't even know what it really is. Pulmonary dr. sent me for a scan of lungs and I dont go back for 4 weeks. I have no idea what I am dealing with . I found this website and I am not sure if it helps or scares me...I need a direction to go in. Any help is appreciated. Thank you.

I was just recently ( 1 year ago) diagnosed with IPF and I do appreciate your perspective and comments.I will be 69 next month, but went for test and blew pretty good so my doctor said it was in the beginning stages. Recently, (2 weeks ago) I got pnemonia and was prescribed antibiotics. After the chest x-ray the doctorinformed me once again of my IPF and prescribed puffers for now and said I will need a catscan. I live in Thunder Bay, Ontario. We have no Resperologist in our city so I would have to go to Winnipeg or Toronto if I need to see one. I have noticed for some time now that my breathing is getting much more labored. I wil attend to the things you suggested. My wife and I have 7 children and 19 grandchildren. We are taking life one day at a time leaning on our faith, each other and loving family and friends. Still, being honest, there's still an element of fear. Thank you for your blog.

I can relate to your story. I am holding steady with my IPF. Going on almost three years since I knew something was wrong. Two years since I was diagnosed. I've gone from bad to better with the help of Esbriet, one of the drugs to slow the progression of this disease. I have my days, don't get me wrong. But overall I keep plowing ahead. Because I am doing a bit better with the help of oxygen and meds, I don't dwell on the outcome. If I got worse, as I know that is the progression of this disease, would I want a lung transplant? I'm not sure I would. I am 63 years old. I'm not sure I want to go through all of the pain, suffering, cost, let alone what it would cost my family. But! I may feel differently if the situation were to present itself. I'm my heart I could not have asked for a better life. I know I am loved, I've a wonderful husband, and a wonderful husband who died way too soon, wonderful children and dear friends who care about me. Who could ask for anything more? I've gotten to taste this sweet life and experience everything I've ever wanted to do. My only hope is that my loved ones know how much I love them. I pray for a cure, especially for those who are way too young that have to live this dreaded disease. For them I pray a cure comes today ❤️

I see me in so much of your well written article.
I too have arrived at acceptance and now appreciate the gift I've been given. I have the gift of time.
I'm not in pain. I use oxygen overnight and periodically during the day. I've had a chance to organize and let people I care about, know just how important they have been and continue to be, in my life.

I am another person diagnosed with PF. For several years I have been treated by a cardiologist and have had stents for blockages. Many EKG's stress tests and for the last few years I have complained of dizziness and passing out. Last month I told him that I thought it was a lung problem. He sent me for a chest x-ray and it came back that there were abnormalities. I then was sent to a pulmonary doctor who did oxygen level tests. He sent me for a catscan and when it came back he showed me the results and also some other older images in the hospital records showing the progression. For some reason this did not overly alarm me when he told me I would have 3 to 5 years. I am 85 so have lived a good life. The only positive thing is that I know what is ahead and know that I have time to get my affairs in order, rather than not know and leave chaos.

Hello Kim,
When my husband was diagnosed with IPF we both went through stages of grief beginning with denial then anger, regret, etc. He had a transplant in Sept.--6 months ago. Although we are both grateful for a second chance-we're both in our 60's; I feel like I've lost the man I married-I haven't reached the acceptance part in of all this and I know my husband hasn't either. It is hard to celebrate life when he constantly worries about rejection. I just want my husband back.

I agree with everything in your article. As I've often remarked, a terminal diagnosis has a wonderful way of getting your attention!

One caveat for folks about "The Grief Process." The model, with its stages of grieving, is a a great one. But the more we've worked with it, the more we've seen that folks sometimes do the stagess out of order, or perhaps only partially resolve a stage and go back to it.

Most importantly, when we grieve an illness like PF, it isn't the same as grieving someone's death. When I lost my mother, I was able to "work through the stages" to acceptance, and that has stayed with me through the years since her death. But when we grieve our illness, we can reach acceptance - only to grieve again when we experience a significant loss of function.

I am 4 years, 8 months since my initial diagnosis. I'm in a good place with it - acceptance is a good word. I use some oxygen and I have some limitations. I've found ways to make a rich and varied life within the boundaries of those limitations - and believe me, I've stretched those boundaries to the limits.

But when I encourage others, I keep in mind that I don't know how I will respond when I have a significant decline. I THINK I'm ready... I THINK I'll be OK. But I know that just as I had to grieve for the "ME" that I lost with my diagnosis - the "ME" that climbed mountains and traveled rough and fast - I know I may grieve again, perhaps several times.

I worked for 35 years as a school counselor and had this lesson hammered home. I worked with kids grieving the loss of the child they were when they experienced puberty. They also often grieved the loss of their self as a young adult when they were approaching high school graduation and the first couple of years of college. Now, as an older person, I observe my peers enterring old age. For some, it is just a normal progression. Others grieve it as a loss.

So... Acceptance is great - it just can't be treated as a permanent state!

Hi all I'm a 38 year old diagnosed 3 years ago with pf.
To say that my world came crashing down around me is an under statment.
My wife and I got the biggest shock of our lives.
It took me ages to get it into my head how to cope with pf. I had to learn to cope to get up exercise keep the weight off just so as if I ever get a transplant I will be fit enough for recovery.
So now we have our own support group up and running and trying to help others with the help and information on your page. Your story's is inspiring.
All I can say is were possible keep moving and never let it drag you down.
My greatest inspiration is my wife and children to wake up every morning and see them helped me through.

Thank you

I truly appreciate your inspiring and positive attitude and it gives me hope that there truly is support and encouragement out there "somewhere." I was diagnosed in July 2017 of IPF after having been misdiagosed with other diseases. I found my doctors had been treating symptoms that only aggravated my real problems. In a independent attempt to help myself I went off every prescribed medication I was taking (starting out slow) in December 2016 and then full fledged off everything by March 2017. I was so miserable for several months that I almost returned to my prescription routine. I am glad I held out because by summer and prior to my diagnosis I was digging in the garden, climbing around on the roof making repairs, painting, cleaning, walking and taking out the garbage and mowing the grass. Prior to this I could not even take out the garbage without having to hit the sofa to regain momentum and ability to breathe. I live in Central Illinois and my doctor told me there was no cure. Being beyond curious I starting surfing for information because I did not understand I got the disease and had not even heard of it. I am still a bit skeptical but had a rude awakening a couple of weeks ago when an attending physician promptly informed me that my lungs sounded like velcro. I did not sleep for many days after his statement but decided that I would trust how I felt which is pretty good for a 69 year old female. I do take lots of enzymes that seem to be helping me and I have seen studies of which are experimenting on other kinds of treatment. I know that grief is a process but I am at a certain level of acceptance about this disease. Acceptance does not mean one has to like it only that I have come to terms with reality. I liked your article because it isn't preachy, does not tell me what "I need to do" and it's honest. I sort of surf the PF comments but have been more annoyed by what I have read than supported. Thank you.

Thank you for this post. It has help me better understand what I've been going through since receiving a double lung transplant almost one year ago (Mar 12, 2017). My recovery has been filled with a lot of pain, anguish, anxiety, panic attacks, nausea, vommitting, you name it and I've gone through it. I was diagnosed with PF Nov. 2013 and started on full time oxygen July, 2014. I was 56 when diagnosed. I'm now 60 and looking forward to returning home (Mobile, AL) after spending almost 4 years in Houston. I have a wonderful support system with my family and what I believe is one of the best transplant teams in the world. Even though my recovery has been hard, my deep faith and belief in God sustains me and encourages me to continue the fight. Just to give you a brief review of my journey, I was in the hospital for a total of 153 days in 2017. During that time, I was switched back and forth between the hospital and rehab twice. After that, I had to return to the hospital 3 times before end of year for various complications. In 2018, I've been in the hospital 3 separate occasions spending 4 weeks the first time, 2 weeks and lastly 1 week. I've been on a feeding tube prior to transplant and continue on the feeding as of today. I was allowed to eat during the holidays but it didn't agree with my digestive system. I hunger and crave food all the time but dare not eat because of the consequences. My doctors assure me that things will get better.
I think often about dying from this disease but I don't dwell on it. I'm okay with death. My business is in order and I have the love and support from my family, friends and church. God never promised that life would be easy but he did promise that he would be with me always, even until the end. I pray God's blessings on every PF/IPF patient out there.

Thank you for sharing with our PF community. I'm always looking for your articles. I think of you and have prayed for you other times when you have shared your struggles. I remember reading you were getting evaluated for transplant and I prayed hard tasty time. I've been battling since 2011.It started slow, I remember when I started using oxygen it was at level 2 and 3 at exertion but now I'm at 8 liters 24/7. I was denied a transplant twice, in Seattle and in Houston. I didn't lose hope and went for a third opinion at Baylor St Luke's Hospital in Houston and they accepted me in their transplant program. I feel positive knowing God has the control.
Also,where can I find your book?
Again, thank you for everything you share with us. I'll keep you in my prayers
Maribel

Hi Kim I'm a 62yr old that was diagnosed with PF in January 2017. I really enjoy reading your post.I look forward to your future posts, thank you very much. For many years I was told that I had asthma, for about 15yrs I was constantly battling Pnuemonia. On January 18th 2017 I woke up my husband at 5am and told him I was having trouble breathing, he rushed me to our local hospital where I was admitted with Pnuemococal Pnuemonia after 2 days of many attempts with breathing treatments, IV antibiotics, and oxygen 24/7 I wasn't getting any better,on the third day around 6pm I had a exacerbation, my o2 sats dropped to 47. I was sent to ICU immediately where my family was called in and by 730pm they transported me to a bigger hospital 30min away. I was put on life support for two weeks. Once they took me off life support the Dr's came in the next day and told me I had PF. I had never heard of it and I was so scared. I was released 3 days later to come home. I was so weak I couldn't walk on my own.
I'm so thankful to GOD for being with me every step of the way. I know HE spared me go a reason. I have been through physical and orthopedic therapy to regain my strength. My husband (my soulmate) of soon to be 45yrs has been my rock and caregiver and without him I couldn't have gotten this far. I came home with oxygen from hospital and only had to use it when active. My Pulmonologist put me on Imuran, Prednisone, and Bactrim DS. 6 months ago my oxygen is on 24/7. I went to Vanderbilt University Hospital in Nashville Tn on February 1rst for the beginning of my evaluation for right lung transplant. He said my lung has shrunken significantly smaller than my left lung and I definitely need a lung transplant. I go back on March 29th for more testing. I'm very scared of what's to come after transplant if I get approved for one. I'm not afraid to die for I know where I'm going when my journey of life ends I'll be in HEAVEN. I'm struggling with the decision whether or not to have transplant. I don't want to suffer and put my precious family through that. I have 2 sons and 9 grandsons and 2 grandaughters. Any information would be greatly appreciated.

GOD bless you
Mary B

My mother-in-law passed from IPF in 2011, so when my husband was unexpectedly diagnosed last spring (April 2017) on the severe end of IPF we had no illusions of where this ends. At 53 he has actively chosen to go to the “live life to the fullest” stage. He moved with our children, now 8 and 14, last summer to our favorite spot on Earth. It’s a remote area with many lakes. Just fishing, ice fishing, watching TV, barbecuing, hanging out around the fire, or at the local bar. “I didn’t move up here to die, I moved up here to live [the life I have left]”.

I was diagnosed with PF bout a year ago. My pulmonologist wants me to have an open lung biopsy so heknows how to treat me. I dont understand, it has been positively dignosed with it. I dont want the surgery, why cant he treat me? Am I wrong?

Kim, I enjoy reading your columns and I know they are very insightful to patients! I, too, have to agree with one of the positives - the time to plan, to share information, appreciate each other more than ever in your relationship. My cousin recently lost her husband very unexpectedly and I can’t begin to imagine her pain. Granted there is NO way to prepare for the end (as I found out) - you can talk, plan, share but it’s still very difficult when the end comes. However, the shock is less for the expected than the unexpected.

I went to my doctor last Tuesday and had a chest x-ray later that day. I received a phone call this morning from my doctor to say I have lung fibrosis. Is this the same and as serious as pulminary fibrosis.

While Mr. Warrick seems to take solace in his IPF and rationalize the inevitability into some sense of peace, I wonder how -- assuming he hopefully has -- his caregiver views her/his fate? There's scarce mention in most cases of what the latter feel while they stand helplessly by, 24/7, watching their loved one endure the damned disease. It need not be said that they are the only ones who try their best to comfort, care and console in less brave moments. And at an advanced age, the patient and caregiver are quite alone with no friends or family. The oft-cited alternative of a "support group" usually results in a sense of commiseration and sad resignation while offering scant consolation.

J.T., you raise a good point about care givers, in my case, my wife of 55 years. She reflects my attitude. When I got bronchitis in January and was worried that this was the beginning of the end, we both were a bit down. But that passed and life is good and optimistic again. She keeps herself fit. We have a young IPF support group here, started by a friend with IPF and he insisted that the meetings would never be "oh woe is me" and indeed, they have always been upbeat. I suggest three things to read. First read all of Kim Fredrickson's columns. I learned more from her than from all other sources about living with IPF. To increase your knowledge and optimism, read the book "Ultimate Pulmonary Wellness" by Dr. Noah Greenspan. Here you will learn how to breathe and how to exercise. Following this author's advice, my breathing situation has improved so much, so quickly that friends can hear it in my voice and I can measure it with my oximeter and at the rehab workout. A speaker at our IPF meeting said that exercise is probably more important than drugs. Finally (not a pun) read "Accepting Death, Embracing Life" by Patricia Gulino Lansky. A speaker at our IPF Support Group meeting lost her husband to IPF last year and she said that this book was an enormous help to her. For perspective, I am 80, diagnosed late 2013, taking OFEV, on oxygen 24/7 at level 5.