Tagged: Advice, diagnosis, new diagnosis, tools
- This topic has 8 replies, 6 voices, and was last updated 7 months ago by Christie Patient.
August 11, 2022 at 1:05 am #32857
Calling all veteran PF-ers! Let’s work together to build a resource for the newly diagnosed members of our forum community. Please answer any/all of the questions below to help create a one-stop shop for people who are just starting on their PF journey. Thanks for your help!
1. What are some must-have items that help you manage life with PF, and maintain your lung health?
2. What is your number one piece of advice for someone who is newly diagnosed with an ILD? Or, what is one thing you wish you knew when you were first diagnosed?
3. What is the best online support group or forum (other than this one) that you have found?
4. Do you know of any grants or financial assistance programs for those who need help paying for medications?
Some examples to get us started:
1. Buy a pulse-oximeter and check your saturations often
2. Stay active! Even if you need to modify your activities, regular exercise helps your heart and lungs stay stronger for longer. Get into pulmonary rehab, too.
3. Ask your doctor about local groups. Our ILD team at UCSF has a monthly patient support group meeting, and a Facebook group to stay in touch throughout the month.
4. The Keep Swimming Foundation provides grants for non-medical expenses for qualifying families when someone is receiving long-term inpatient care.
August 11, 2022 at 9:34 pm #32891Steve DragooParticipant
1.) I had to let my doctor know about the PF News and Forums, hopefully, she is referring patients to you because hands down PF News/Forums are the best sources for encouragement, enlightenment, cutting edge, relatable stories, shared similarities, recipes, fresh ideas, and real-time insights on medical trials with promise for the future
2.) Facebook has a number of PF groups and whenever I see a new person posting, I refer them here.
3.) After I had a deadly acute exacerbation 2 years ago (I was helpless for weeks and did not eat for a month), nothing is easy anymore but I realized that any consistent exercise is valuable, along with a very healthy diet (mostly), and a handful of daily supplements. Any exercise is valuable but the key is to do a tiny amount many times per day – that seems to save a lot of atrophy.
4.) I want to add our spiritual walk is critical regardless of what your beliefs are as there are still some simple and valuable things you can do to help yourself:
a. We are not victims – the world is full of incredible oddities and I have yet to see any “Fairness Certificate” on my birth certificate.
b. Get right with yourself and discipline (educate) yourself on your internal self-talk we all have it. Understand the 6 stages of grieving and where you might be in them.
c. Seek professional mental help if you need to.
d. Work on your spiritual walk and know we are all on a one-way journey but it does not need to mean the end.
5.) Do what you can to find a mental and physical balance every day – for me, that means trying to be outwardly focused and a blessing to those around me.
August 18, 2022 at 1:04 pm #32914Paul B ~ LakelandParticipant
I am 70 years old. When I was first diagnosed 18 months ago, I knew nothing of PF.
This site has provided a ton of important information – use it.
Get a second opinion – I found a special team of doctors that provide excellent care. They are a pulmonologist, a rheumatologist, another a gastroenterologist.
I started Ofev as soon as possible, and believe the benefits far outweigh the side effects.
My cough was bad for the first 6 months, but got better with time.
Try to live one day at a time – Some with PF live much longer than the averages you may read about on the web.
I can still do everything I used to do, but slower now.
Hope this helps!
Paul B ~ Lakeland, FL
August 22, 2022 at 8:41 pm #32930
Thank you for sharing @steve-dragoo and @pbugz12 !! I love to see common themes appear, as well as unique perspectives on coping. Hoping we got some more responses to help others who are just starting their PF journey. I appreciate you starting us out.
August 23, 2022 at 3:35 pm #32937Donald GeorgeParticipant
Imagine your lungs as a healthy honeycomb and sing as often as you can. It has been a big help to me as I’m going on my ninth year since diagnosed with IPF. I do use the Imogene oxygen machine also as a booster only.
August 23, 2022 at 3:50 pm #32938StewartParticipant
Here’s what I did in the first few months after I was diagnosed with IPF. I reported about it to the two doctors I was working with about half a year later–last March. (Now, five months later still, I’m continuing the program, breathing fine, and even gained weight now over 150 pounds.) I’m 83.
Dear Drs. Golden and Andereck…
I’m pleased to see my fibrosis appears to be pretty stable currently. It may be luck, or it may be partly due to what I’ve been doing at home. Since it’s a variety of things, who knows which parts are effective or ineffective? I gather you’re both interested to know what I’ve been doing, so here’s the roster—the various items underlined.
As soon as I was diagnosed with Idiopathic Pulmonary Fibrosis, I was grateful to have something to focus on and I set two major goals: 1) stop losing weight and ideally gain some back; 2) get my lungs more fit.
Two books were helpful. One came from a recommendation by an IPF patient on the Pulmonary Fibrosis News Forums. She said that the book Ultimate Pulmonary Wellness by Dr. Noah Greenspan had encouraged her to exercise her lungs, and that it helped. I bought the book and found it full of useful lore. The second book came with learning that IPF is largely a disease of the aging, which I am. So I got the current leading book on stalling or even reversely the various effects of aging: Lifespan by David Sinclair at Harvard. He recommends trying a daily dose of NMN and Reservatrol; I mix the powder (half a gram each) into kefir at breakfast.
Dr. Golden, since you mentioned reflux as a possible cause of IPF inflammation, I got a wedge pillow to keep my head higher at night (and I sleep on my left side, which is said by some to help keep stomach contents where they belong). Also at your suggestion, I commenced taking a green tea extract capsule (670 milligrams) every day—between meals when supposedly it is more bioavailable. You also encouraged me to keep exercising.
That I did—in part to exercise my lungs, but even more to see if I could build up muscle mass. Wariness of Omicron covid kept me from the CrossFit gym, so I got a set of dumbells and a bench, adding to them as I got stronger. I now work out pretty intensely every other day for an hour or more. For guidance I tried several fitness apps and settled on an excellent one: Fitbod. To keep track of runs and walks I use Strava.
To track my weight I got an app-connected scale, the iHealth Nexus scale. The iHealth app keeps beautiful track of my weight—which I measure several times a day to get a detailed sense of what drives it up and down. (The app also connects to my pulse oximeter. It’s fascinating to watch my blood oxygen respond to exercise—down a bit, then way up.)
Last November I found my weight sinking to new lows (136.2 pounds) when I traveled. (That’s largely driven by my ongoing dental issues that make me a slow, picky, unsocial eater whose appetite wanes fast.) Dr. Andereck prescribed the antidepressant Remeron (Mirtazapine) to improve my appetite, which it really did. I take just the half-dose, 15 mg. To supplement my mealtime food, I drink several protein drinks (especially after exercise)—Ensure Plus, Ensure Max Protein, and Muscle Milk.
Between the exercise and better eating, my weight stopped going down and has been steadily going up for four months. I’m currently averaging above 144 pounds—8 pounds above my low—and feeling great. [Later as high as 152 pounds–16 pounds above the low.]
A couple of other items have helped. One is the Oura Ring I learned about from David Sinclair’s book. It measures sleep in detail and reads out values on sleep, readiness, and activity in the iPhone app. It is surprisingly revealing and does adjust my behavior toward better sleep and exercise discipline. Ryan got one too; we compare notes in the morning. [Note: the Oura ring now measures nighttime blood oxygen level–mine is currently 98%.]
When my Pulmonary Function Test was approaching, I decided to “study-to-the test” and bought an Airofit spirometer. It turns out to be something athletes use to enhance their performance by increasing their lung capacity and their strength and control of breathing. It is a nifty device that I suspect could be useful to anyone with lung issues. I train with it for a few minutes every morning. In just a couple of weeks my lung capacity (its version) has gone up steadily (from 3.5 to 4.3 liters) [later to 6.5 liters], and so has my inhalation strength.
So, my relevant meds are:
Green tea extract
Prilosec (for reflux)
Protein drinks (Ensure, Muscle Milk)
Dumbbells and bench
iHealth pulse oximeter
Airofit training spirometer
August 23, 2022 at 5:36 pm #32940George ManolakisParticipant
My biggest regret was not starting either Esbriet or Ofev when I was first diagnosed. I read so much about side effects that I told myself the side effects outweigh the benefits. Boy was I wrong.
5 years after diagnosis I started taking Esbriet with zero side effects so I would strongly recommend starting drugs ASAP and ,if side effects occur, deal with that. I am in my 6th year at 87.
I learned so much from this forums and am deeply grateful for those maintaining this site.
Somehow I found the Heartwell Foundation as a group that helps with partial payment of medications. They give grants for one year at a time for qualifying diseases. Since I am in my first year, I do not know the process of renewal in future years.
Hopes this helps someone.
August 23, 2022 at 8:09 pm #32943
Great advice @gmanol. I think a lot of people hesitate to start because of all the discussions about side effects. I definitely am on the try it and “deal with it if/when you get there” train myself. I’m glad the meds are working well for you now!
Definitely appreciate the financial advice too. Lots of folks here are looking for ways to help afford OFEV and Esbriet.
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