What It Means When I Say I Had a ‘Bad Clinic Day’

Charlene Marshall avatar

by Charlene Marshall |

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Outpatient pulmonology appointments are common for people with idiopathic pulmonary fibrosis (IPF). The frequency of these appointments varies, depending on how the disease progresses, but spending a day at the hospital for various tests is familiar to many of us.

Since my IPF diagnosis in 2016, the number of these appointments I’ve had has increased over the years.

Friends and family members often reach out after I’ve had a full day of pulmonary clinics to ask how they went. Usually, I’m exhausted and reply with a one-word text like, “Good,” “OK,” or “Bad.” Inevitably, I’ll be asked what constitutes a bad clinic day.

Dreaded delays

Staff members at my transplant center do their best to try to keep things running on time, yet it rarely happens. I avoid complaining because I never feel rushed during my appointments with the pulmonologist. I believe my doctor values quality conversations about my care over worrying about how long my appointment is. I appreciate that, and others probably do, too, which likely causes delays.

I try to keep this in mind during long clinic days, but appointments that run late often affect my entire day. Because the transplant center isn’t close to where I live, I usually book multiple appointments on the same day to maximize my time at the hospital. This means that when one appointment runs late, it has a domino effect and delays others. Unexpectedly long days are just one cause of a bad clinic day.

Poor test results

Back in October 2017, I wrote a column about being happy with a stable outcome from my test results. Because IPF is a progressive, life-threatening lung disease, it is rare for patients to receive good results from the pulmonary function test (PFT). Sometimes one value of a patient’s PFT might be slightly improved while others have declined. So, I consider it a good day when my lung function test values are stable.

On the flip side, declining PFT values are one of the top reasons I might say I’ve had a bad clinic day.

Too many needles

Another thing rare disease patients have in common is the amount of bloodwork that is done. Until recently, this was always painful for me because my veins would roll away or collapse from overuse. This resulted in multiple needle pricks to access my veins, leaving both the nurse and me frustrated and upset.

A while back, I had a port-a-cath placed in my chest to help make the process easier. Excess needle pricks were another reason to classify my clinic day as bad.

Medications

Although I should know to expect it, I always feel anxious discussing medication doses during my appointments. It feels like I just get used to a medication regimen and then it needs to change, due to side effects or other reasons.

When dosages need to be adjusted, it throws my body into disarray, especially if they are increased. If the medication being adjusted is a steroid, it usually causes appetite changes, making me want to eat everything in sight or avoid eating anything at all.

I’ll also feel increasingly angry or irritated, as “‘roid rage” is real. And I might develop puffy cheeks and “moon face,” which isn’t pleasant.

Adjusting medications is something I’ve come to expect during most of my appointments. When those adjustments lead to physical changes in my body or unpleasant side effects, I always feel frustrated. It is another example of one of my bad clinic days.

Delayed appointments, test results indicating disease progression, multiple attempts at taking blood, and medication adjustments all leave me feeling weary after clinics. Managing a chronic illness is a full-time job!

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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, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Comments

Holly W Patient avatar

Holly W Patient

I just wanted to send love and a hug your way. I understand your feelings and have great hope for a future that will include much fewer of these bad clinic day.s

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Charlene Marshall avatar

Charlene Marshall

Thank you so much Holly! Sending hugs right back to you. When we can travel again, northern California is on my list so I can't wait to meet up with you in-person hopefully someday soon! Much love, Charlene.

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Karen avatar

Karen

My heart goes out to you on your bad clinic days. Everyone has them at one time or another, but the need for understanding, support and a few good hugs never lessens. I wish you many good clinic days in the future. Take care, dear girl.

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Charlene Marshall avatar

Charlene Marshall

Hi Karen,

Thanks so much for reading my columns and reaching out via the comments. As always, it is wonderful to hear from you! I appreciate the support and understanding; and the virtual hugs too. Wishing all of us easier days with this cruel disease. Take good care, Charlene.

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Suzanne avatar

Suzanne

I feel your pain! While I too appreciate the length of time my pulmonologist (and others) can give to me during my three month visits, invariably there are those days when everything seems to take longer than it should. I am lucky in that I’m pretty close to most destinations where I get care but it still becomes a long day to squeeze everything in.

When your results aren’t what you hope, that is tough as well. Recently I’ve had increased coughing and I’m unsure what is causing that. I added Tessalon Perles to my medication regime about five weeks ago but that’s not helping much. Next step will be a “short course” of prednisone, which I may start as early as next week. I haven’t had to take it yet myself but watched several times when my Mom took it. The sleeplessness and ravenous appetite I observed in her scares me a little. Her disease was COPD, so different from the IPF I have but often steroids are prescribed for both. I did see that it helped her a lot so that’s what I’m kind of holding onto as I face this next step in the course of my disease journey.

Thank you for writing what we probably all feel from time to time. It helps!

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Charlene Marshall avatar

Charlene Marshall

Hi Suzanne,

Thank you so much for reading my columns and reaching out via the comments. It's so nice to hear from you!

Sorry to hear you can relate to this column, long or bad clinic days can be so tough, especially when there is some angst or anxiety already built into our appointments, which is often the case for me. I'm sorry to hear of the increased cough and the need for prednisone to hopefully help it. If it helps at all, I have had very positive experiences with Prednisone, especially if it is a low dose over a period of time. Please keep me posted and I hope it helps you too. Take good care and thanks again for your kind words! Charlene.

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Clive Lugmayer avatar

Clive Lugmayer

keep smiling. Whenever I start having rough days that never seem to end, I make myself laugh, usually at my own expense.... I'd say something to my doctor like, Mom said I would have days like this.... she didn't say they would come in bunches like bananas.... my doctor would chuckle, knowing that I was trying to cheer myself up a bit. today is one more that I'm above ground, a good thing I'd say.

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Charlene Marshall avatar

Charlene Marshall

Hi Clive,

Thank you so much for reading my column and reaching out via the comments, I appreciate your positive words and suggestions on how to cope with difficult days. Laughter can be so powerful! Thank you for sharing, I do appreciate it :)
Char.

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Madonna Kennedy avatar

Madonna Kennedy

hi ladies, I am new to this page and so glad to find this forum.I am 69 and newly diagnosed IPF . I have taken prednisone on the recommendation of three different physicians...they each wanted to see “what would happen” and antibiotics and anti inflammatories and immune suppressants...well none was a silver bullet.but with all of the meds we started on a low dose and raised it and then when there was no improvement tapered it off to zero. It may be just me but I didn’t feel roid- rage or want to eat the horses and chase the riders in hunger...years earlier i took steroids for other ailments and did feel “ antsy or pushy” but the encouraging news is that you may have little or no ill effects ...and hopefully ..a lot of good effects!!

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Madonna Kennedy avatar

Madonna Kennedy

I am recently diagnosed with IPF. I am 69.It began getting out of hand and got me to take notice a year ago...then came the covid shutdowns while hospitals took care of the deluge of lung problems. my progress went on hold. during 2020 my symptoms worsened until i am now on oxygen 24/7...I blissfully had no knowledge of pulmonary fibrosis or how one gets “it” or “recovers” from it’s clutches.My family is fabulous but even more mystified than I am...but now i find a whole tribe of us right here sharing ideas and strength and understanding. my therapists are very nice and knowledgeable but only from the inside can we really know how it feels to be dry-drowning. I am so happy to be a part of a group that I didn’t know existed, would not have ever wanted to be a member of but that I find myself welcome and accepted. here’s to a long friendship ...💖

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Charlene Marshall avatar

Charlene Marshall

Hi Madonna,

Thank you so much for reading my column and reaching out via the comments; it is nice to hear from you and welcome! I'm sorry you're now dealing with IPF too and that you're on oxygen 24/7. This disease sure can be cruel, can't it? I was blissfully unaware of lung diseases before my diagnosis too, and now I encourage everyone not to take advantage of their healthy lungs and protect themselves accordingly. I'm glad you found us too - there is so much value that can come from sharing our experiences with one another, from a group of patients who truly "get it". Others try, even caregivers, but they ultimately can't understand. I'd highly encourage you to also join the PF forums:https://pulmonaryfibrosisnews.com/forums/ ... it is another group of wonderful people who will help you as best they can throughout the journey. Take good care and keep in touch - you are most welcome here. 💖 Char.

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