Is My Disease Worsening?

[Dennis Broetzman]

Good morning Charlene, I was diagnosed with IPF last July. My breathing  capacity has decreased about 8 % per a barometric test last January. Going for another test end of July. I feel like my breathing hasn’t gotten worse, probably because of the Ofev I am On . We  sat around a camp fire this past weekend and yes the same as you the smoke really bothered my lungs.( I am struggling with the diarrea side effects though from the Ofev.)

[Charlene Marshall]

Thanks for sharing your experience Dennis and wishing you goodluck on your upcoming breathing test. I have one at the end of July too! Campfire smoke bothers me a lot as well, and I always have to sit downwind of it if I join my cousins around the fire at the cottage. Glad to hear you think Ofev is helping you though! Have you tried the sublingual imodium for the diarrea?  I found regular imodium wasn’t helpful for me at all but the sublingual tablets (dissolve under your tongue) made a world of difference for me. My Mom is a pharmacist and recommended it. Maybe worth a try?

 

Charlene.

[Norman Beattie]

I have the same problem with second hand smoke of any kind cigarette, bbq, etc. Makes me come up short for breathing. Diagnosed in 2016 as well noticing a decline lately. Pulmonary test shows 16% less capacity from 6 months ago. Also on OFEV and diarrhea is difficult to live with.
Thanks for this blog Charlene.

Norm Beattie

[John Penn]

I was diagnosed in November of 2017.   My most recent CT scan indicated little to no changes since the initial diagnosis.   What I have noticed over the past year is a worsening cough, particularly in the morning, and when taking a steamy shower.   Mornings cough spells can last sometimes an hour or more.    Once I get over them I am ok thought the coughing itself will take its toll on my energy.   So it is confusing when thinking about is my disease worsening or not.   I am still fairly active though not at the same level prior to being diagnosed.   I walk 1-2 miles 4-5 times a week though I need to keep my pace to moderate.   I know everyone here wonders about the progression of this disease we all have.    I love reading others journey through this.

[Virginia Currie]

there are good and bad days mostly bad days at work and home.  Ofev delays the progression of the fibrosis but my shortness of breath is unbearable.  I work as a night cardiac nurse.  I have to do my share.  I have to help my patients as well my co nurses’ patients but walking around the unit wears me out.  I started coughing hard until secretions come out from mouth and nose.  I would hide in a vacant room so my peers and patients would not hear me.  I’m working because my insurance pays for Ofev. I wish I could share in this forum that Ofev helps my dyspnea but it doesn’t.  My O2 saturation drops to 84%-87% but rises up once I rest.  I bought a scooter so I will save my energy from parking lot to the nursing unit and back to my car at the end of shift. This is a death sentence for me.  I hate this disease.

[Charlene Marshall]

@vmcurrie62

Hi Virginia,

Thank you for being so vulnerable and brave with sharing how this disease is impacting you. I hate it too, and I’m so sorry you’re dealing with it!
Earlier today someone told me that it was refreshing to simply hear someone say they hate IPF and it was equally therapeutic for me to say. Please don’t ever feel like you have to apologize on this site, we want to be here for you and only wish we could do more. I suppose the one thing we all have in common is just how much we “get it” and how hard it is to have IPF.
Please reach out anytime if you need support, I’m thinking of you.
Charlene.

[Amy]

Sounds like my mom. I’m sorry to hear your struggle, but it seems as though you are going to need oxygen at least when you are exerting yourself. It was a difficult transition for her,however she knows she needs to use oxygen most of the time now.

[Christie Patient]

Hi Virginia @vmcurrie62, First of all, I want to echo what everyone else is saying–your feelings are valid and it’s ok to vent! Second, I just wanted to ask if you have spoken to the HR professionals at your job about your illness. They may be able to provide some accommodations for you to make things a bit more manageable, especially since your job is so physically demanding. My mom also worked in a hospital while she was sick with IPF. She was in the lab, so not really a patient-facing role, but was on her feet all day, bending, lifting, etc. For several months she was using portable oxygen at work, and her HR rep arranged for her to have time off mid-day to rest and attend pulmonary rehabilitation. Ultimately, they also helped educate and guide her through the process of retiring on disability. She was able to retire with her benefits intact for several years, as well as go on medicare, so her insurance needs were all met while she transitioned to medicare fulltime. It was the best choice, as she needed to prioritize rest and recovery at that point, though she did struggle with it emotionally. I’m sure it’s on your radar, but I just wanted to bring it up so that you know there are options to maintain coverage of OFEV, etc. beyond the workplace. Something to consider. Hugs,
Christie.

[Virginia Currie]

I’m sorry to share my dismay, I just need to vent my feelings in this forum.

[Gordon B Sandmire]

Good for you, venting is therapeutic and this is a good place to do it. We’re all going thru this so no apologies are needed.

[Randy]

Good afternoon everyone. Talking about is your disease worsening, I will have to say yes for me. I had my 6 month lung test last month and the figures weren’t good. My velocity was down to 33 from 43 last time. The volume is at 43 were it should be in the 70’s. My doctor said that if it gets down to the 25% mark, then he will put me on the point above hospis. As you can figure, this is scary, for now I am really planning out some last minute bucket list. My youngest son has been after me for us to got out to the state of Washington to see their house, were they live and some sights. My doc said if I don’t get any worse between now and Sept. I can go. So, we are planning on this as possibly my last trip. I hope not, but it could be.

Well, everyone, have a great summer and yak at you all again.

[Sharon MacMillan]

So I feel pretty much the same as I did when first diagnosed:  Tight chest, fatigue, morning cough, shortness of breath with exertion.  Then I was hospitalized with shortness of breath, but it was due to anxiety.  The medical staff didn’t know the cause of anxiety.  It can be from the disease itself, or two other reasons.  I was surprised to find that I had hyperventilated.  Since that hospital trip, I started Lexapro because it also helps the breathing as well as the anxiety and OFEV. I seem much more controlled in my breathing.  I am happy to share this incase anxiety is an issue for you.  Knowing we are fighting IPF is reason enough for anxiety.  We have been given many medical pieces of the puzzle to make our lives and lungs work the best we can.  Some of the pieces are hard to hear and require adjustment to prepare for the future. But if lexapro helps control anxiety and better breathing, we can add that to our list of helps.  So glad for this site where we can hear from others and share our own experiences.  Wishing everyone an encouraging day.

[Charlene Marshall]

Hi @sharonmacmillan

Thank you so much for sharing this information, I have no doubt that it will be extremely helpful for others! I really appreciate having this information myself too, so thank you.
Charlene.

[Amy]

Yes my mom just started lexapro. She is not an anxious person but has experienced episodes especially prior to showering. I push and encourage  her while helping her. I believe part of the cause is she was trying to do this task without her oxygen which she cannot tolerate being off of at this point.

[Norman Beattie]

Charlene’s forum allows us to really describe how we feel without feeling guilty since everyone understands. So Virginia vent away, Randy get out to Washington, and Sharon thank you for striving through extreme health measures to dole out care to those who need it.
i read most of the submissions and wish you all well on the up hill battle caused by IPF

Norm

[Charlene Marshall]

Well said Norm! I find this forum so helpful because its filled with people who truly “get it” and what its like to live with this terrible disease.

Please don’t anyone feel like you have to apologize for venting – we’re here for you!
Char.

[Phil Ryan]

I’ve had IPF for about 2 years now.  It seems to have progressed fairly rapidly in the last month, with my having to use higher doses of supplemental oxygen.  Also, in the last week I have not been able to sleep.  Just lying awake at night.  Has anyone else experienced sleeplessness?

 

[Charlene Marshall]

Hi Phil,

I often have trouble sleeping but its because my mind races vs. symptoms of this pesky illness. I actually take a melatonin – very low dose – every night to help me sleep and shut my brain down. Mindfulness helps me too; not for everyone but something that is effective for me. May be worth talking to your doctor about in case its somehow linked to the increased need for 02?
Char.