Where do you live, receive care, and are you in a local support group?

[Ron]

Hello William,

I will try to answer your query and a few others in subsequent posts to yours.

I am 80 years old, a widower, and live in Boise, Idaho. I moved here from Colorado in January 2020. Am a veteran and never used VA health services. On Medicare Advantage insurance. Diagnosed IPF in 2007. Followed up for 3 years until 2010 with CT scans. No progress of fibrosis so discontinued followups. My only symptom was SOB which very slowly improved until December 2017. Flew from Colorado Springs to Boise for Christmas with family members and contracted pneumonia. CT scan showed “some” progress of IPF scarring and PFT had deteriorated some.

Suzanne R Brennan (post number 20278) mentioned being treated at National Jewish. I lobbied hard with my insurer to at least be evaluated at NJ and was turned down. Instead, I was referred to the Kaiser Pulmonology Center which happens to be across the street from NJ. Had a very knowledgeable doctor who was trained at NJ and stays in touch with colleagues there and at monthly conferences. I feel comfortable I was getting top-level medical care.

Tried both Esbriet and Ofev and suffered the more common side effects. I had no problems with Esbriet for 6 months until I spent 15 minutes in strong sun. I got the sunburn, and after a couple of months or so of healing I was willing to go back on Esbriet but my pulmonologist in Denver said no. I had lots of stomach problems and diarrhea with Ofev.

I was hospitalized three times with pneumonia and sepsis between December 2017 and December 2019.
In December 2019 I was placed under sedation for three days during which time my adult kids were brought in from around the country to prepare for the worse. I fooled them by waking up on the fourth day.

This hospital did a swallow test and determined I was aspirating food and drink into my lungs. I had been aspiring quite a bit in the months leading up to this and other hospitalizations but didn’t connect the dots. Unfortunately, the hospital doing the swallow test didn’t educate me at all or prescribe post-hospitalization home therapy.

I moved from Colorado to live with family in Boise upon release from the hospital. I again contracted pneumonia in January. This hospital in Boise also performed a swallow test, and they told me how my aspirations were likely why I kept getting pneumonia. The doctor arranged for a speech therapist who specializes in swallowing issues to treat me at home. Now I have learned how to swallow with less tendency to have aspirations and have been hospital-free for 15 months running!

I do have a mild case of GERD and use an elevated adjustable bed. The GERD varies over time and it is time again to treat it with one of the …azole OTC drugs.

I signed up for my VA Health benefits and have been assigned a primary care doctor at the Boise VA Medical Center. I haven’t seen him yet due to Covid but he did move one of my expensive heart drugs into the VA drug program at 1/10th my former cost. I will probably stick with my new civilian pulmonologist as I am happy with him.

One last thing, I have been using the green tea extract Teavigo 150mg X2 daily since March 2020. Had a PFT in March 2020 and again in February 2021. There was some minor improvement. I certainly feel better but that could be because of the lower altitude in Boise (~2700 ft elev vs 7000 ft elev.)

[Paul B ~ Lakeland]

I’m 69, live in Lakeland FL. Was diagnosed with IPF 4 months ago. Taking OFEV 150. No nausea, mild GI irregularity. Enjoying life one day at a time. Going to Univ of FL pulmonary dept next week just for confirmation of all tests and bloodwork. My pulmonologist also in Lakeland. No support groups here, but will do zoom group next month. If anyone lives close to Lakeland, please let me know.
Thanks!

[Michelle Johnson]

Tustin California I go to UCI Douglas hospital and the doctors there are really great they take really good care of me thanks Michelle I’m not in a Support group

[J L LaBrack]

Hi–
Compiling data sounds like a good idea! The pros don’t seem very motivated to expedite new treatments–or better yet, a cure! I’m sure there are some really good pulmonologists out there, but I’ve yet to find one–even Mass General Brigham was no help. Every medical school has someone who graduates last in their class every year, and there’s a medical school somewhere in the world that’s rated last in pulmonology. That leaves us to become our own advocate in most cases. They’re more interested in COPD, asthma, emphysema, etc. than in IPF. I’m a 79-year-old male, diagnosed in May 2018 (which puts me in my 5th year). I’ve lived in southern New Hampshire all my life. I’ve opted out of Ofev and Esbriet because of terrible side effects and dubious stats about increased longevity, as well as the $100,000 per year cost. Still not on oxygen but suspect that’s coming in the not-too-distant future, although I’m still averaging 95% oximeter readings when resting (does go down to 88-89% if I go upstairs too fast. My local pulmonologist has put me on a once per year appointment to measure the rate of decline–nothing else. All in all, I’m guessing I’m luckier than many in beating the odds so far. Each day is a blessing!
/JL

[Mike Ktori]

Hello, I’m Mike and I live, with my partner of sixty years, on the Queensland coast approximately a one hour drive north of Brisbane. I have recently been diagnosed with Combined Pulmonary Fibrosis and Emphysema. Having been a non smoker since 1979 so find it difficult to see that as a cause. We have a private hospital within a twenty minute drive and a local GP. Our local pharmacy delivers if we need and we reside in a residential retirement community where we have meals delivered daily. I do not have a local support group. I am a retired photo’ technician (microfilm systems) and still spend time making pictures. I am on 24/7 Oxygen therapy with home equipment supplied by the medical system. I had to fund my own portable and I understand that our private cover will contribute towards part of that expense.

[Richard Halderman]

I’m a 70 year old mele diagnosed in 2015 I live in Yakima Wa. and recieve treatment in Seattle Wa. about a 3 hr. drive. As far as I know there are no social support groups local. IPF is not bad as yet, I have limitations on activities but it what it is.

[Janet]

Hi, and thanks to William for starting this thread. We live in Cypress, TX, which is a Houston, TX, suburb, and it takes about an hour to get down to the med center area, where I get medical care. I was diagnosed with IPF in January 2022, when we lived in Austin, TX, and have had escalating symptoms since 2018. Started taking Ofev Oct, 31, often followed by Imodium for the side effects. I have been part of a PF Warriors support and a Houston-based group, both online. I have been feeling rough, but my O2 saturation is still in the 90s, so no oxygen yet. Some days I can still get in a short walk, but it really strains my breathing. I’ve lost around 30 pounds over the past two years and most of what I eat tastes like cardboard, but I’m trying to keep eating because my docs keep telling me to. My husband is taking on more and more and doing a great job, but I worry about his burning out. We are going to a family reunion over Thanksgiving for three days, and I’m worried about how I’ll do.
Oh, shoot, all I have done is complain! I’m sorry. Positivity: I’m sleeping better than I was and Greek yogurt takes pretty good.

[Phil Ryan]

I’m 76 and have had both IPF and pulmonary fibrosis for over 2 years. I live in San Francisco and have an excellent medical team. I do not belong to any support group, but I do participate in group therapy twice a week at a local hospital, with significant positive results. I believe that therapy is more important that any support group if it’s available.

Given our existing technology, I don’t see any reason that a support group has to be “local.” It’s easy enough to organize a Zoom meeting that could include members with like attributes or interests (i.e., over a certain age, male or female, those with certain underlying conditions, or just a mix). all it takes is someone to organize it…You?

[Christie Patient]

Hi Phil, if you are a patient at UCSF, they do have a great monthly support group for ILD patients and one for caregivers as well. We also have a facebook group to supplement that if you’re on social media. 🙂 Sounds like you’re taking good care of your mental health, but if you want to connect with other patients…

[Scott Johnson]

I was finally diagnosed with interstitial pulmonary fibrosis 20 months ago. I live in Southgate, MI, which is downriver Detroit. I go to a pulmonologist in Dearborn affiliated with Beaumont Hospital and another in Ann Arbor affiliated with Univ of Mich hospital. Finally got on Esbriet thanks to the mfgr covering the cost. No support group, but there should be.

[Richard Pedemonte]

I live in Fairfax Calif, just north of San Francisco. I was diagnosed in January of this year and so far my symptoms have been fairly mild.  My oxygen is still in the normal range but I have a lot of shortness of breath. I am being treated at UCSF which has a network of clinics in my area. I just finished tapering off of prednisone which was hell for me. I started with  Esbriet  but it really tore me up so I stopped until I got done with the prednisone. Gonna try again..gradually this time.