Will I Miss Out on Significant Life Events?

Hi Charlene! I love how honest you are about your journey with IPF. My grandmother lost her life to IPF in 1997. My mother is currently battling IPF and waiting for a double lung transplant. The thought of my mom missing out on significant life events is scary and frustrating.I so desperately want her to experience not only her own milestones, but mine as well.

please notify me if there is a response to my last post ;)

My mother has IPF and when she was diagnosed last March, she went to work that Friday and that Monday, March 13, 2016 she was in the hospital and has been on disability since. With finding out about this lung disease the way we did, it scares me that she will never see her her granddaughters graduate high school and/or college. She will not be here to congratulate them on their big days, but I have told my 14 and 7 yr olds that they are to make as many memories as they can with her, and it's for them not her. Hit milestones so that later in life they can say, I remember when granny said....did....laughed....smiled or said good job, I'm proud of you. Seeing the person that you love try to be as normal as possible, but you see them struggle with something that we take for granted daily and that's just to breath is so hard to except, process and deal with. I am and will be her spoon until she has no more to give. We are coming up on one year of her new life with IPF. I pray for all who is affected by the IPF disease. This disease has been an eye opener for me and my family, but with prayer and our faith in God we will be ok. God Bless❤

Oh I am so sorry that you are so young! My husband was diagnosed in March 2016- last year. Despite all my efforts, each month is more limiting. He says no to a lot of outings and activities because of breathing. Getting dressed drops him to 70 and he is on oxygen 24/7! He says( despite his positive outlook) that it's discouraging. I know all diseases are awful but I truly believe not being able to breathe is the worst- thanks for listening

Hello Charlene. My mom was diagnosed at 75 with IPF and is no longer with us. Before she was diagnosed I had never even heard of the disease. In her memory, I continue to receive the emails and try to raise awareness in my own little corner of the world. I read your column today and I think it was beautifully written. I truly hope that you are able to live and breathe for many years to come and meet every milestone you mentioned. I know that even as I write, there are people who are searching for treatments and cures. My best thoughts and wishes for you. And congratulations on accomplishing your goal of obtaining your degree!

I truly understand how this feels, I am 45 and have grandkids & nieces & nephews that I would love to see graduate & also my stepdaughter. This can become very overwhelming.. God. Bless us all

I am wondering if anyone with IPF took the drug Phen Fen back in the 90's? I have IPF and just heard from a friend there might be a connection as it not only caused Heart Valve problems but also lung tissue problems. I did take Phen Fen. When it was removed due to the serious problems it caused I was notified and recieved a free Echo Cardiogram, but nothing at that time regarding its effect on lungs.

I would love to travel but having PF puts a halt to that train of thought. I was diagnosed in march 2016 with IPF. The dr I had at the time just put me on Esbriet, which really didn't do anything other than mess my body up. My new dr, has ran tests, bronchoscope, thoractomy, blood work, etc. Found out that he says I have Chronic Hypersensitivity pneumonitis (an allergy). This caused all the scarring in my lungs. Just waiting to see what I am allergic to.
Since January, I am on oxygen 24/7. I have a nasty scar on back, lost my job. Applying for disability. But yeah I would love travel but I have to figure out much oxygen tanks, how far and how long. Just going to the grocery store is on limited time and air.

Hello Charlene. I have IPF. I was not diagnosed until I was 51 years old (I'm 52 now,it's only been five months). But my husband has CF (cystic fibrosis). You're born with it, back when he was born you were not expected to live past five years of age, if you did you probably wouldn't make it to your teenage years and if you did you weren't going to hit the adult years. Well, this June he will be 57 years old. Not bad. With CF the lung scarring is on the inside of the lungs, with IPF the scarring is on the outside of the lungs. Very similar with the same difficulties and double lung transplants could become a reality for either of us. Yes, the way you are feeling is normal, especially with a chronic illness and one that is pulmonary. Once you hit those milestones, you have new one to wonder about. Will I see my grandkids, will I see them all grow up and even see their kids. Well, we have grandkids and our youngest is turning 3 this year. We plan to see her grow up and did maybe even see her become a mommy. The prognosis they give us, just numbers, don't represent anything in our life. There may be people in your life who are too scared to face this with you. That is not a reflection on you. It is because they sre not strong enough to deal with it. But that prognosis is just a number that should not plan your life. Dream, explore and experience. Live life to the fullest because you deserve yourself that. I wish you all the luck sweetheart. And there will be someone that you meet and he will be just as strong as you. And he will understand the treatments but he will love you so much that he will find the strength he needs in your love. Value him, and appreciate each other. Now I can say I know exactly how my husband feels. So we're taking as new journey together. There is as reason for it, I don't know what that is, but I trust in the Lord that he has this. Live your life. We're masks if your meet to. But live your life.

Be strong Lady and have FAITH in God. In 2013 is was diagnosed with IPF. Before that it was PH, Crest and Raynauds syndrome. And after having all of these, Dr's say the main cause of all of these is Scholeraderma. Never heard of any of them. I am always reading up on new meds or new cures. I have heard some foods that FDA is currently testing. And I send new articles to my Dr. Just in case he misses it. I love my life just as did before but at a different pace. I have strong Faith that they will find some kind of cure or something to prolong this disease. You hang in there and do what you can do. Try to connect with the Lung &Heart Institute near. They are doing stem cell treatments and it is helping people. Good luck and you are in my prayers.

Hi Charlene. Where abouts in Canada are you living? Are you originally from here? I'm in the Greater Toronto Area and a board member on the Canadian Pulmonary Fibrosis Foundation.

Although most of our PF Community are far older than you, life milestones and events are also something that older PF/IPF patients consider and worry about. The birth of the grandchild or even like me another great grandchild. Or a daughter's marriage. Some are still young enough that they are still raising their family and worry about seeing them to adulthood and married, etc.

Anyway we can do a remote graduation ceremony for you? By we, I mean the PF Community world-wide. Last year we lost a good friend on the Inspire forum who celebrated her big birthday at a winery with friends. At either the actual same time or the comparable time locally, we raised a glass of wine in celebration of her life and birthday. I know it's not the same but you must, we must, find alternative ways to celebrate these moments while and when we can.

Cheers to you. Downers are fine. You are no more perfect than any of us. Attending your own pity party if okay as long as we don't overstay our welcome ;-).

Barbara (Catlady51)

Charlene Im currently 39yrs old (40) within the next 6months. I was diagnosed with IPF in 2009 I 36. My life was busy, mom to an 8yr old, newly graduate with a B.A.and working a full-time job. I had never been a sickly person so when I developed a cough my primary dr. thought it was an asthma flare but I had never had to use any rescue inhalers nor did I think I actually had asthma. But I what she prescribed I felt a bit better but once the 2wk course of steroids would be up I was right back in the e.r. or in her office with the same symptoms. It wasn't until I was in the e.r. again that a janitor asked me if I had seen a pulmonologist. I hadn't but something else happened when he said that; I suddenly remembered the progressive decline of my mother who had died from IPF in 2003. I cried because I knew how difficult a life she had. I took to the web to refresh myself on the sign and symptoms and I knew from that point on my life would be different. The day I saw the pulmonologist she knew that there was something very wrong, my medical history would indicate that nothing should be so worrisome except that my mother died from IPF. I wasn't a smoker, drug user or anything out of the ordinary. I attempted to do the PFT's but had to stop because my stats we so low they put me on O2 immediately, I started using no less than 4lts. continuously from that point on. I knew what this meant...I would die much sooner than I had planned for my life. I figured since I was starting with 4l continuously than my IPF was much worse than my mothers'. I couldn't return to work because I worked with individuals with special needs and there was no way I could be of service to them if I didn't even know when my last breath would be. I became consumed with finding out as many details about what I was going to face and how in the world would I be able to take care of my son, household and my relationship. I went for my lung biopsy for definitive answers but after the procedure, my lungs collapsed and wouldn't inflate so I was put on a ventilator for 3 months. When I woke up everyone was happy I thought I was just out for a little. I knew things were a bit more than that when I couldn't move my legs or right arm. I was alive but what type of life did I really have at this point, I was paralyzed and couldn't speak because of the vent still being in. My boyfriend/fiance and family was called to come to see me. They explained as best they could to calm my fears and what all happened to me, nothing really sank in at first. I was so drugged and in pain, for days I drifted in and out. I worked hard the following months to get home. I had to relearn how to do everything for myself. I was determined to get my life back or what was left. I had to shut down the part of me that was very independent so that I could follow what they were teaching me on how to be safe with my equipment and just walking/ lifting/or pivoting in general. I thought that would be the ruffest but it wasn't, within that year I caught pneumonia and bronchitis again in which I would spend the next 2yrs in the hospital fighting once again for my life. I was depressed, angry and hopeless. I had multiple surgeries to help stabilize my breathing, becoming paralyzed again due to some experimental medications they tried. I couldn't see living life like this. I fought with everyone to an extent even my baby boy. It was beyond hard trying to parent from a bed with a ton of o2 blowing up your nose while still feeling like you're being smothered. I thought no one could possibly know this slow death I was going through. I was pumped with a lot of steroids, couldntI gained a lot of weight. I was worked up twice for a double lung transplant but was turned down because of my weight. I was still getting pneumonia's and bronchitis's while under isolation. Long story cut short they couldn't find the source until I was choking on everything I swallowed. One of my many traches caused a hole in my esophagus that eroded to my trachea. I was npo many months. They cut my esophagus above and below the hole. I was placed on a feeding tube, my o2 uses dropped back to 4lts(highest amount 75 liters walking(((yes 3 big green tanks tied together on an iv pole)))), I lost 150+lbs and at that point believed that I would take my chances without a double lung transplant. During that time I thought many times all the things I would likely miss if I didn't give myself permission to live. It was no longer my plan but my will to live and a mentality that while Im still alive I will celebrate. I will make it do whatever I want to do. No one every said life had to go as planned but only that you make it the best while you have it. I now say that god, the angel, and ancestors laugh at my plans so I just don't make them I live. I will tell you that I had my breakdown about a week ago, because I was so worried that I will be entering my 40's this year and as I get closer to 46(the age my mom died) I naturally would fear that I will die before of near 46, I mourned for a life that I didn't have yet, I grieved over the possibility of not seeing my son graduate high school in 2yrs. I cried because I still didn't think I deserved this disease. After a week and a half I told myself THATS ENOUGH, You ARE STILL HERE, SO SHUT UP AND LIVE. And that's what I did and talked it out with my therapist. I know I will have to have that pep talk again because that's just the ego not wanting to give up control but I been through some much and learned so much, and taught so much that Im at peace overall. I learned to live for me in the now. I "put my affairs in order" and know Im simply living. I try not to be careless with my days, thoughts and words. I live life for me, not for someone else's holiday or event but what makes my loved ones and me happy. Those are the memories I want to be known for, not stressing away the time I still have. Stay focused on what's directly in front of you. Keep positive.

I appreciate your writing. I was diagnosed last January 2016 with IPF in both lungs… Moderate at the time. Although I am a few years older than you I can relate Totally. Before being diagnosed, I just went through a divorce and moved back to my home state to help take care of my elderly parents. I don't even think about how to explain having a terminal illness to someone if I was in a relationship because I don't even plan on being in a relationship. I don't think it's fair to the other person… so I would say that is one of my sad things that I'm going to miss out on. I truly believed after my divorce that life was looking good again. Well, as we all know.... Life can change on a dime and mine did. I don't view your writing as a bummer… It is realistic and I appreciate it.

I am going to miss and I do miss the closeness of a partner and having someone to go through this with. I am fiercely independent and I can do it on my own, for now… But the thought of never having another love is sad. I pray for us all.

I only have one child, a son, who bought a two floor penthouse in Puerto Vallarta, Mexico the month I was diagnosed two years ago. I live in Florida. I would love to go there but am terribly afraid to go. Fears of how I would feel on the big flight day, catching something in a poor country, oxygen, wheelchairs in airports, what if I get sick there, or worse die, etc. BTW, I’m 76 years old. I do know what it looks like because of the technology today, but if I were healthy, I would have been there already!
I know I’m older, but I do read all your articles. Keep putting them out there for us. We have many things in common with this disease. I’m just so sorry that you have to face it at your young age. Heaven will help us with a better life forever!

I appreciate your candid writings. Ironically, I just wrote on my Facebook page that I was going to start living like I am dying referencing the Tim McGraw song but that I wasn't going to be skydiving. One of my daughters got married this year and she had to plan a destination wedding in Vancouver to accommodate me. She lives in Chicago and I am grateful to how many made the trip. I was not doing well at the time and so while I was there, it was difficult not to enjoy it like my other daughter's wedding 5 years ago. That daughter just had a baby, and now I am again faced with the joy of having a new grandchild but not being the grandma I would want to be, helpful and healthy. My other daughter is also now pregnant and a visit to Chicago will not be possible, the visit to Vancouver already requires the supplemental oxygen and other details to organize, just to say hello. But yes, at least I get to experience this and while it is compromised I am hopeful to receive a lung transplant and be back in action. Being slowed down has really given me an appreciation for how many things we daily take for granted. Your words are real and comforting, it's to know others have the same difficulties. My glass is still half full!