You went to your primary care doctor who referred you to a pulmonary doctor, as he or she could hear crackling in your lungs. The next step taken most likely was for the doctor to do bloodwork and a High Definition CT scan, and the results are in…. and you have been diagnosed with Idiopathic Pulmonary or Pulmonary Fibrosis. Now what? The first thing I will tell you is: “Don’t focus, obsess, spend your entire day and most of the night on those year numbers you have been either given or seen on-line and you’re scared to death. Stop, Stop, Stop! Take a breath and let’s focus on what you can learn and do. Stay as positive as you can.
Most likely your doctor didn’t give you the news gently or with finesse, or you may just be finding out that you have had the disease for several years but was never told! Why! We can only surmise that the doctor didn’t want to tell you because there is no cure. Or, the doctor told you and this is how it went: The tests we did show you have Idiopathic or Pulmonary Fibrosis; there’s no cure; you’ll end up having to go on oxygen; your prognosis is that generally, you have 3-5 years to live. Wow! I bet you feel like you got hit in the gut, knocked off your feet, and can’t seem to get those feet under you to find your way out of the office as quickly as possible. If your doctor is a good one, he or she will tell you about some medications that are out there that don’t cure the disease; but, have been shown to slow the progression. Again, if they are good, they will tell you to get into pulmonary rehab which will help you to gain strength in both your body and expand your lungs to keep them supple and viable for as long as possible. They will tell you to eat a healthy diet consisting of foods that keep your body in an alkaline state to avoid further inflammation in your lungs, or any other part of your body. I was on vacation with friends when I got a voicemail message from my doctor who said, “Mrs. O’Bryan, we have gotten the results of your CT scan, and we need to talk; it’s not an emergency, but I’ll call you later.” I waited a day and a half, and finally called the office and said, “I need to talk to the doctor, he’s ruining my vacation!” A bit later, I got a call back; here’s how that went: “If it looks like a duck, walks like a duck and quacks like a duck, it’s a duck. You have Pulmonary Fibrosis.” Yep the rest of my vacation was a load of fun.
After your diagnosis, on the way home, you’re trying to process what you just heard. If you have a loved one or a friend who went with you, you are both trying to process the news. When you got home, you probably sat and tried to digest the entire thing, then immediately checked with “Dr. Google” to see what the heck it is you have, and try to find out more about it. Now, Dr. Google has his place in getting you information you need; however, remember this: He isn’t a real doctor!!! If he consults with other doctors, and it’s documented, that’s one thing; but the first thing you see when you go in to his office through the portal of your computer is: Prognosis after diagnosis is 3-5 years to live there are those numbers again.
Let’s stop right now and talk about the numbers you see. First thing I want you to do is strip down naked and check out your body from the top of your head to the tip of your toes; check with a mirror and check your backside. If that’s too scary right now, or you don’t have the strength, wait until you next bath or shower and do it; however, the sooner the better! 😊 Do you see anywhere on your body and expiration date? I can guarantee you that you don’t! If you’re a Christian, you know that there is only one person who knows when you are going to die and that’s God. God with a capitol “G.” There are those who think they are God with a big “G” but they are actually not gods at all. Their thinking is that MD after their name means “Minor Deity,” and they know when you are going to die given previous statistical information; what may have happened in the past to previous patients, but they don’t! I was told right out of the gate, “the bad thing about this disease is that it can move very quickly.” And in some, it can, and does; but it doesn’t necessarily mean for you that it will. When I was diagnosed in 2016 after a lung biopsy which showed definitely the diagnosis, my doctor had already heard the crackling in my lungs in October of 2012. From March of 2016, I obsessed with those numbers; and according to them, I was going to be dead by the end of the year! It’s 2020 and I’m still here. 😊 Let me mention now, that there are good doctors along with the not so good ones. There are those that have the patient’s best interest at heart, and want to make their life the best they can have.
Remember this as well, being diagnosed with an incurable disease takes time to process. It’s a grieving process. You have to go through the stages of grief: Denial, anger, bargaining, depression, and acceptance. The process is normal, so don’t think you are the only one going through this. In addition, going through the stages you will need to work through them at your own pace. We are all going to die at some point none of us know when. The last two, depression and acceptance, are the hardest for me because of having to deal with the disease on a daily basis; there’s no getting away from it. You will need to find your way through the process much like you did when you lost a loved one. You have lost the life you knew; but you will need to refocus on a new way of life as you deal with your disease. It’s a journey you will take, we all take, you just have to find your way through with whatever tools you find along the way. For me, I’m a Christian and I rely on my faith; and friends who share my faith. At the end of this blog, you will find some resources that will help you through the process.
I believe, as do others, the information on the web is not consistent with what is going on at this point in time. The two medications that are currently available have slowed the progression for some. There are multiple other medications that are in the pipeline right now, meaning they are in the end stages of phase three clinical trials, and will either be, or will be within a short period of time, made available to patients. There is a plethora of research being done now all over the world. If you are a silver lining person, the one thing that Covid-19 has done for we who have IPF, is that the consequence of the virus is scaring and difficulty breathing long after the patient is over the virus. Do you know what that means? Lots and lots of money is going to be going in to research regarding the scarring of lungs. I’m not a Pollyanna thinking that the cure for lung scarring is right around the corner and will be there for us, no I can’t do that; however, because the disease runs sometimes in families, it will hopefully be out there for our children and grandchildren and others who develop the disease.
The purpose of this blog is to tell you things you can do to live your best life!
- Don’t obsess over the numbers, they don’t apply to everyone.
- Find a good pulmonary doctor; one that specializes in IPF/PF.
- Find some support web sites. There are several out there that are most helpful. These sites are usually for patients and caregivers. Caregivers, are often-times the ones who seek out the information because the patient just can’t do it on their own; or, they are in denial. Denial is an okay address for a while, but can’t live there forever. These sites have patients who are living with the disease who can give insight into their experiences, things they have learned over their years with the disease, as well as recommendations on various issues that work for them. The dreaded IPF cough, kinking oxygen hoses, etc. But most of all, I want you to remember this: They will give you VALIDATION! What do I mean by that you ask? What I mean is the patients on these sites have walked the walk. No one, I mean no one, not even your spouse, your family or your friends can possibly know what it’s like to have IPF/PF. Are there other diseases that are awful, yes indeed! But not being able to breath is the most fundamental action your body does on a daily, hour to hour, minute to minute basis to keep you alive.
- Yes, you’ve been dealt a lousy hand, but you must not let the disease define you. I’m not saying it’s easy, it’s not! It’s a daily process sometimes as I said, minute by minute. And the Covid-19 we are experiencing at this point in time makes it worse. I admit I have cloistered myself because I have four grandsons all under the age of seven and I want to be around to see them grow and to let them know their Nana. If I didn’t have them to live for, I would go out and about and not worry, because as a Christian, “I know where I’m going.” I tell myself this all the time. No matter what happens, I’ll be okay. That doesn’t mean I don’t get anxious and depressed, but I dig my way out. I have to. You have to.
- I would highly recommend you seek out help from a therapist or counselor; although they don’t know what you’re going through; they can listen, and teach you coping skills. If you can’t afford a counselor, please, please, please seek out asap a support web. Sometimes, you just need someone or somewhere to vent to people who know what you are going through. Your family won’t understand. And you probably don’t want your family and friends to know what you are going through because they are scared too and they won’t understand, and they’ll let you down. Some patients I heard of indicated their families have walked away from them, or they are in denial and won’t leave the denial address because it’s easier for them to stay at that address!
Learn to meditate, do breathing techniques, read a devotional, read your Bible if you are a Christian. Listen to positive inspirational people. Listen to music.
- Get together on zoom, or facetime, or a phone call, and talk to your family. I’m writing a book called “The Story of Me.” If I am not able to see my grandsons for a while, or if I leave this world and go to my permanent home, they will know me through my story.
- Try to give yourself a purpose for your life. Everyone has to have a purpose in order to live a fulfilling life. Find a way to give to others in a way that makes you feel like you are doing something. The things we go through make us who we are. Going through IPF/PF makes us unique; that uniqueness can help others. One man honored his wife, with his family’s help, by holding a blood drive in his wife’s name.
Support web sites for support and information: