Tips to Help Doctors Give Us the Help We Need
Just like you, I’ve had my share of good experiences with doctors, and frustrating ones, too. I wish I could share some tips with doctors to help me cope with this awful disease. I’ve asked fellow patients I know online for their input, and they had a lot to share about this very important topic. I bet you do, too. I’ve written the following tips in the form of a letter to our doctors.
Expressing gratitude
I appreciate all that you do. You have sacrificed years of your life to help patients by attending college and medical school, completing your residency, and perhaps undertaking additional training. You most likely have student loans you will be paying off for 10 to 20 years.
You have a difficult job dealing with life and death and many stressors as you meet with patients, deal with insurance companies, run an office, and handle employees and financial concerns. You truly care about your patients, and we are so grateful for all you have been through to become a doctor.
I know we can’t know what it is like to be a doctor, and you can’t know what it is like to have pulmonary fibrosis.
What it’s like to be a PF patient
While everyone is different, we have some common experiences. One day our lives were fine and were going according to plan. We experienced some shortness of breath and other symptoms and looked for help. We didn’t think it was serious, and we hoped for a quick fix.
For some of us, diagnosis happened quickly. But most of us were misdiagnosed over months and even years, losing critical time to try therapies to slow our disease.
Some of us were told clearly about the seriousness of our diagnosis in caring and compassionate ways. Many of us were not told we had a terminal illness and found out on the internet. Others were told abruptly with little compassion. We were in shock and probably unable to ask you questions.
We left your office in shambles. We couldn’t believe the news. We began grieving the loss of our dreams for our future, and the ways our diagnosis would affect our loved ones. We faced having to tell family and friends, attend medical appointments, deal with financial burdens, and learn how to administer oxygen. Even with the support of family and friends, we often feel alone in what lies ahead.
Connect with other people and share tips on how to manage PF in our forums!
Tips to help us
Treat us as people and not just as a condition. It’s not just our lungs and bodies that are affected. Our emotions, relationships, and ability to cope are stressed, too. It helps when you ask us how we are doing, what questions we have, and what we need.
Listen to us. It helps us so much when you listen to our concerns and take them seriously.
Educate us. We are devastated and desperate to get information about our disease, treatment options, and what to expect as our disease progresses. Please have copies of the “Pulmonary Fibrosis Information Guide” on hand for us to take home. Provide a handout with referrals to counselors, information about oxygen, and links to reputable help online such as the Pulmonary Fibrosis Foundation, the American Lung Association, and Pulmonary Fibrosis News. This information will help to reduce our anxiety and help us cope.
Explain in regular language what is going on in our lungs and bodies. Show us our CT scans and X-rays or draw diagrams to help us to understand more fully what is going on. Explain the symptoms that we might experience as the disease progresses and suggest ways to manage them.
Talk to us about hard things such as acknowledging the severity of symptoms and our impending death. Don’t sweep it under the rug because you’re uncomfortable or tell us it’s too soon to talk about it. Addressing these difficult topics will help us cope with what’s ahead.
Encourage us to do all we can to be as healthy as possible. Give us a referral to pulmonary rehabilitation and explain why exercising can extend our lives. Explain the medications you’d like us to try and their potential side effects.
Please be patient with our struggles and feelings of distress. Your kindness and compassion mean the world to us. Remember that it takes a great deal of strength for us to manage our disease and stay hopeful on a daily basis.
I’d love to hear from you
What did you think of these tips to our doctors? What else would you add? What tip was most important to you?
Please leave a comment below and share with those who could benefit via email or on social media.
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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
P.T. Ummer Koya
Really good to read even though nothing can be done. But there is little relief when knowing that there are some people who are trying to share their sentiments with others who are too suffering the same decease.
Kim Fredrickson
Hello P.T.
Thanks for your encouragement. It does help to know we're not alone.
Christine Walters
I would like to know what to expect as the disease progresses. Also what stage am I in right now.
Kim Fredrickson
Hi Christine,
Yes, this is very important. We all want to know and Doctors often have trouble sharing this difficult information. Thanks for sharing.
Helen Boyer
I have a problem with the doctor's staff. When I call to leave a message and request a call back from the nurse, most of the time, I never get a response. This is so frustrating. I don't know whether the nurse just don't want to talk to me, am I too much trouble, do I ask too many questions, do I think I am special or what? I feel like my concerns are valid and need answers. Also when I make an appointment with the doctor for a few months in advance, I will frequently get a call cancelling that and making a new one with the NP. I don't know whether to persist or just wait until next visit. The doctor is always very kind when I do get to see him but I wonder if he even knows what is going on with his staff. This disease is so difficult to deal with anyway and with an office nurse who doesn't care and offers very little help, it is even worse. The last time I called was a month ago and I never heard back.
Kim Fredrickson
Hello Helen,
You are so right. The doctor can be very good, but have a difficult staff to work with. So sorry this keeps happening to you. I will include this in the book I'm working on.
Sharon Merchant
I would contact the Dr. by letter, e-mail , patient portal and tell him or her the problem you are having with the staff. Documentation is necessary of time and question of each unanswered communication made to the staff. Remember you are hiring the Dr. and you can get your records and find
one more understanding of your needs.
Kim Fredrickson
Dear Sharon,
EXCELLENT advice! Thanks!
Tom L
I could have written the same exact thing, less an appointment with the NP. I called and emailed, beginning on 07/02, again on 07/13 and 07/20. I, finally, received a call from a nurse today, offering empty platitudes and excuses. When I went to a COE (120 miles away), shortly after diagnosis, I was told to continue what my local pulmonologist advises. We have 5 pulmonary doctors in our small town, all in the same office. I want to change doctors, but nowhere to go. :(
Kim Fredrickson
Dear Tom,
How frustrating! So sorry your options are limited in your small town.
Jonathon Till
I have had a similar experience to Helen which also included screw up's on medication. The Doctor was very good but as a result of further problems I switched my PF doctor to the one that presented at our pulmonary rehabilitation course. It seems that the majority of Pulmonary Specialists deal primarily with things like COPD, and most have very little experience dealing with an IPF patient. In my case the new specialist was very keen to run a batch of tests to see if I had Sleep Apnea which leads me to my suggestions....
When diagnosed with IPF I had breathing tests, CTscan leading on to a high resolution CT scan, followed by a biopsy. OK that confirms the disease, and one quickly learns that it is terminal and has no cure. We are given hope with research going on and of course the new drugs such as OFEV which can help to slow the disease.
So given these parameters I figure the most important thing for me as a patient is to understand the progression of the disease. Seems simple but how many folks have been set up with ongoing high resolution CT scans and breathing tests that can easily chart the progress of the disease?? I am now working with a new specialist, and will insist on having a regime in place to monitor these things and to provide a measurable indicator of the status of my disease.
Over the last two years my symptoms have got worse........but it's not shortness of breath, it's more about lack of stamina. I get tired very quickly and just run out of energy.
Kim Fredrickson
Hi Jonathon,
Thanks so much for your comment. I appreciate you sharing your PF journey. I think we all want to know more about how our disease is progressing. I hope your new specialist is a help to you. I had the same thing happen to me. I became less active over time and my body became deconditioned and I got more tired. My column for next week will share how I was able to make progress and get some of my stamina back. Blessings to you.
Rosemary lee
First the good news I've been fortunate in that my lung Dr does respond within 24-36 hours to my EHR MyChart message center. He's very compassionate , sensitive & a great listener .
The bad- I'm a retired nurse only 61- always been advocate for my patients, I'm assertive and believe care should be a partnered joint relationship . My lung Dr tends to be a bit overly paternalistic sugar coating info so as not to depress me or say anything that would make me give up hope . To heck with that - I want it straight up no BS I have plans to make.
Maybe others can identify . Hugs & prayers to all. Currently awaiting my insurance surhorization to be co side red candidate or not for non idiopathic ILD double lung transplant at U Maryland.
Manuel Parra
How long did you have PF before being evaluated for a lung transplant.
Kim Fredrickson
Hello Manuel,
Thanks for asking. I had PF for 4 years before being evaluated. I was bad enough to be evaluated for 2 years before this, but I had to wait because my PF was caused by chemo I received for breast cancer. They want me to wait until I reach the 5 year cancer free mark (Jan 19) to list me, but were willing to start the testing at the 4 year mark.
Rosemary lee
6 years pos diagnosis and I brought it up not my Dr.?
Apparently there is little outcomevresearch & data surrounding patients w auto immune dis asks getting double lung transplants.
My dis as severe SOB w oxygen has repaidly progressed pas 11 months and even more so past 3 moths.
Kim Fredrickson
Hi Rosemary,
Thanks for sharing your experiences. I totally agree with you! We want accurate info shared with compassion so we can make plans, prepare and enjoy life! Best wishes to you on the lung transplant possibility!
Rosemary lee
Hi Kim
Hugs thoughts and ?? To you too.
Love ro
Tony Hernandez
Hello Kim: I often surf the net for information on IPF. I am glad I found your story and chats. I read many of the email comments and I found them to be so well writen. It seems those with IPF are also well read and can communicate in a written language. Highly unusual on the Internet.
I was diagnosed in 2017 and came under medical care by VA doctors in 2018 when I was prescribed OFEV, 150mg. I can live with the gastro side effects. These clear up by noon time, somehow. I am a Vietnam Veteran. My deployment was in 1967-68. Just last week during my Pulmonologist visit in SJ, PR, the doctor saw me before noon and commented that his five previous patients that morning were all PF sufferers. Even with that kind of incidence, the Veterans Affairs will not classify PF as a cause of the use of defoliants throughout SE Asia. My claim was twice denied. I do not mean to use this forum for any cause. Perhaps those writing in should identify if there is any possible connection of their IPF condition to their military service.
I must say that I feel okay, other than breathing difficulty when negotiating many stairs or even mild slopes. I use a CPAP machine and supplemental Oxygen at night. Thank you for your fine work.
Samuel Kirton
Tony,
I realize you just saw your pulmonologist. Recent changes to the PACT Act and Agent Orange may warrant you considering whether you should file a new claim. This link takes you to a page on the PACT Act and Agent Orange. https://www.va.gov/resources/the-pact-act-and-your-va-benefits/?utm_source=google&utm_medium=paid_search&utm_campaign=ar_pact_fy23_veterans&gclid=EAIaIQobChMIqZafmIn9_QIVRfTjBx1dagSoEAAYASAAEgI6B_D_BwE
Christie Patient
Hi Tony, I'd like to add to Sam's comment, that there are others dealing with IPF which may be related to military service, and agent orange. You will find a few similar stories if you join our forums, which you can find at the very top of this page.