What I Want My New Pulmonologist to Know About Me
A strong relationship with a medical specialist can make a world of difference. As a young adult living with idiopathic pulmonary fibrosis (IPF), a debilitating and life-threatening lung disease, I have various specialists, but the one I value most is my pulmonologist.
Before my diagnosis in 2016, I bounced between multiple specialists. Although my symptoms and scans indicated IPF, it wasn’t likely that I had this rare lung disease, which typically affects older adults.
I remember the diagnosing physician telling me that he was unsure how IPF would progress in a young adult. He said I might need supplemental oxygen in six months or still not need it in five years. The former materialized for me because I got sick with a respiratory infection.
Following my diagnosis, it took some time to get set up with a consistent pulmonologist, but he was worth the wait. The first time I met with him, I felt heard. He validated how difficult it is to be short of breath and acknowledged the fatigue that comes with IPF. During subsequent appointments, I didn’t have to fight for anti-fibrotic medication, and he was always transparent about the progression of this disease, regardless of how scary it was. He knew who I was and what I needed as an IPF patient.
In October, I wrote that my pulmonologist was retiring, which left me with mixed emotions. Thankfully, his plan to retire didn’t materialize for several months, and he was very intentional and thoughtful about transferring his patients.
My first appointment with my new pulmonologist is coming up, and I feel anxious and uneasy. My new specialist doesn’t know me as a patient or a person and isn’t aware of what I still want for my life, despite living with IPF.
Following are a few things I want my new pulmonologist to know about me.
I am a strong advocate.
I was never a loud or demanding person, but that changed after my diagnosis, especially when it comes to medical needs. I will strongly advocate for patients living with chronic illnesses, particularly lung diseases.
I believe in second opinions and encourage other patients to ask questions or respectfully challenge anything that doesn’t feel right. We know our bodies best and should be considered the experts on living with IPF. If I have a concern about my medication regimen or disease management, I will speak up.
I will push my limits.
I’ve always been fiercely independent, and IPF won’t change that. When I was prescribed supplemental oxygen, my biggest fear was that my ability to travel would be taken away. That same year, I flew from my home in Canada to Australia and arranged to pick up oxygen canisters there for the duration of my trip. I’ve also flown to Hawaii, California, Texas, and both coasts of Canada since my IPF diagnosis.
I’ll always prioritize safety because I know there are risks in using supplemental oxygen; however, I don’t want it to be a barrier to doing the things I enjoy. With that said, I’ll find creative solutions to accomplish things I want to do while using oxygen, especially if it helps me maintain my independence.
I am a compliant patient.
In my years of living with IPF, many physicians and other healthcare professionals have applauded me for my compliance with medications and appointments. I want my new pulmonologist to know that they don’t have to worry about whether or not I’ll abide by their recommendations and that I’ll be prompt and attentive at all of my appointments.
I enjoy research and learning.
I live my life with curiosity. I always want to learn new things, understand others’ ideas, and consider alternative ways to do things. This means that I pay attention to potential treatments and promising IPF research and will bring these to the attention of my new pulmonologist. I also want them to know that I have a master’s degree, and while it isn’t a medical license, I hope my curiosity and passion for learning is appreciated.
What are some things you’d want a new pulmonologist or specialist to know about you as an IPF patient? Please share in the comments below.
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, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
Jerry Hinkey
Does anyone know companies that offer 5 or 10 liter oxygen concentrators to rent for a week or so. Like in alaska
Marilyn Cellucci
Dear Charlene,
I hope your new pulmonologist is as good as your old one.
Did you ever go for a second opinion? And if so , what did you think of that person? Could you have continued with that doctor?
I really like my pulmonologist, she is the head of the department where I go. I have been with her since 2009. I had started seeing her before the second opinion was used. I asked her about it once and she commented that it wasn't used at that time, but did not mention to me that perhaps I should see one since I was such a weird case. We have two other centers of excellence here in Philly. It would be interesting to get a second opinion just for academic purposes. Like you, I research everything. I was a hospital pharmacist.
Charlene Marshall
Hi Jerry,
You may want to check out this link for oxygen rentals: https://www.specialneedsatsea.com/reserve-equipment/oxygen-rental/ . I, neither BioNews can endorse this company but I wanted to share it with you in case it helps. The Pulmonary Fibrosis Association out of Texas may also be able to help.
Take care,
Charlene.
conni borwick
i read your article about your pulmonologist and heard your issues clearly. I have had only one who is pretty far away that I thought heard me. my current one that used for years altho I did get 2nd and 3rd opinions completely abandoned me twice! in december i went in hospital for an exaserbation for a week. Never heard a word even when i called they dont go to the hospital i was admitted to<but never offered and help or even interest. I got better went their for a pft test thank you very much and left.
i like her as a person and felt maybe it was my fault because like you i always went in with a positive attitude and conversation. In April i had a heart attack,had a 5 way by pass surgeryand she is admtted to that hospital. i realize that heart takes precedence over all and everyone is subservient to the heart doc. But really they offered me no help,nothing,i had to call multiple times to get anything, the direct quote i got from Kimberly the nurse was "keep doing what your doing" but none ever asked me what i was doing. Thank god for PT and OT,they have been my life savers. i have an appt. in sept. with the only doctor in her practice that knows PF and after that i am leaving that practice. trouble is i have HP and all they all seem to know about is copd and sleep apnea!!
my sadness is deep and i really feel abandoned the only one in this whole mess has been my primary doctor who is an angel for sure.
Brian Patterson
Hi Charlene, I very much enjoy your posts. Thank you for the work you do in publishing them!
Do you (or anyone else reading this) know of a central source for tips from IPFers about what has worked for them to ease the challenges in their journey? I have read lots, but I have not seen a compendium of recommended practices. One example is taking Zinc to minimize lung scarring; another is pineapple juice, ginger and honey to suppress the IPF cough. There are others.
George Poulsen
84 and been at this for a while, and still on concentrator but soon may have to change to full plug in at home. It may be important to remember that we are all using different available family or social support and are at different stages with different long term family or other needs that pull at our conscience, different ages, different stages, different desired futures, different progression points in the disease, and most are likely dealing with a different form of the disease (already categorized nicely or like most are an unknown source), from others and different weight, height and etc and being diagnosed by an entirely inadequate information system other than a calculated ability to walk so far, inhale so much and exhale so much including with or without sufficient oxygen and saturation and to use only one or two FDA approved drugs which are likely recommended based on the limitations of risks and liability for not going outside the Government approved guidelines. All this with little concern to get to know the patient and his/her needs and desires for quality of life or other values rather than quality of remaining life and cost and sufficient market exposure to make a buck. After that its easy.... but wait we still haven't developed a short cut to get to a cure yet, have we? Maybe to be on the market 5 years after the next FDA approved third stage test, right? Lastly to realize that the success or lack of can only be determined after the last breath. Not ranting, but believe some docs need more attention to client patient needs and desire than to classrooms and or the next patient. I know they are overbooked, and maybe under-educated in a specialty area and now many are joining the latest craze of Private Equity buy ups of Pulmonology groups and inadequate phone pyramids thru the home office to docs who are flying elsewhere during the week, etc and have money matters and retirement on their minds. There are a lot of scared individuals who cannot control their future right now and can only hope for cures and answers where there appear to be few. Seems like all efforts are to simply collect more statistical data for the next meeting 6 months later for more stats. Is this helping us or their next book or white paper? I read about them regularly right here on this site. Where is the progress? I feel there is a tidal wave of R&D "cures" on their way to the front of the room, but we're not seeing enough posting of the status where people can see it and where it might just do some good to those who may need just a bit more hope? I realized recently that none of the Doctors I have met with understand that Inogen only makes concentrators and only up to 6L, and that others who recommend a 640L tank don't seem to understand that at 10 lpm you get maybe an hour unless using a Maximizer? This is only my opinion not a discussion topic.
Zo Michael
Hello Everyone,
I guess you would call me a "sculker" ?? Is that a word?? I have been a loyal reader of many post in the past couple years, Sam, Charlene, George and more folks. I have read every one with great interest.
I myself was diagnosed in 2017. First calling it Hypersensitivity Pneumonitis caused possibly by mold or my farming community which I have lived in my entire life.
It appears my charmed and healthy life, working hard at my own business for 38 years, playing wildly with 5 grandkids,
hiking, walking, bike riding came to a progressive end, first with Ovarian cancer 2013 (all cured)...I know?? When does that happen? PRAYER then Followed by a Myocardial infraction and pariacarditis in 2014 on the 4th of July. (Might have been from mowing the grass in 95 degree heat with a 20 inch push mower with no self propulsion.)
So in 2015, at my heart checkup with a new replacement cardiologist, I was told I needed to see a pulmonologist because my heart was good, but they pulled me off the treadmill within a minute or so because my oxygen had dropped to 83.
So here we are 2024...75 years old,(feel like 35 in my heart and head)
Same pulmonologist ( very passive, respectful to me) dutifully scheduling LFT and CT once a year. Way back in beginning he suggested getting on a lung transplant list. I thought that sounded preposterous!!
The severity of this killer disease crept up on me.
I am living my life now as I would never have believed.
This is no doubt a VERY TOUGH way to carry on, but Charlene, thanks for all your interesting stories, George thank you for proving your mind...never sounds 84!!
You give me hope!! And especially Sam, sounds like you inspire all. Thank you for starting this informative forum and so sorry to hear about your brother, thank the good Lord he has you.
I wish everyone here all the very best and thank you for posting.
Z