[Tony Hernandez]

I was diagnosed in May of 2017 and a year later The VA prescribed OFEV, which I have used consistently.  I tire a bit negotiating slopes and long stairs.   I can do my lawn without too much difficulty.  I see my Pulmonary doctor (at the VA) at least twice a year.  I undergo studies of Lung Function yearly.  Other diagnosis:  heart valve deterioration and some cartoid blockage. And of course, arthritis of knees and hip.  But I live with all of these without too much complaining.  Oh, and I use a CPAP machine with O2.   I sleep just as well with  the device as not.

My doctors evaluate my condition(s) as stable.   But there is a possibility for a stent to go in for the valve malfunction, next year.  I am 78 years old and I live in the tropics, farm country.

So, to answer the question of the subject:  my IPF has progressed slowly as far as symtoms but very stable for years.   This is Year Six for me.   I feel  strong and unperturbed at this time.  I do cough a bit.  And I admit that I do little exercise, other than in doing my chores around the house.

Stay well.

 

[Tony Hernandez]

I am very glad for those whoo have had success in filing for SSDI.  I was turned down on my claims with the VA on two occasions.  My claims were not on the list of conditions – for Agent Orange connection.  The last claim was handled by a cousin who was in the Army for Iraq, and Afghanistan and he deals with homecoming veterans and their cases =as a civilian counsellor.  He submitted my claims and documents on CD to a department handling Claims back in Florida where he resides.  The outcome was that if I resided in Florida for at least six months, they would get me approved.   I do not intend to leave my home in the Caribbean.

But this SSDI is news to me and I will research the requirements.  I must say that I am 78 years old and I get benefits from a private industry pension and Social Security and I also have private medical insurance plus some Veterans benefits.  So, I probably do not qualify for SSDI.  I was diagnosed with IPF in May of 2017 and I have been on OPEV four years now. Other than some tiring on slopes and stairs with drops of blood oxygen percentages (low 80s) and increases of Pulse (120s), I have a normal routine.

 

Thank you for your input.

 

[Tony Hernandez]

Greetings.   My IPF diagnosis was five years ago and the OFEV treatment started about four years ago.  I am under care, medical visits CTScans, other studies with the Veterans Affairs.  My father had lost much of his hair at 20 and his father was quite bald, too.  Mother’s side keeps it.  I always had a slight receding hairline.   Perhaps during the past four or six months, the thinning is more serious.   I have always found lots of loose hair on my hair brush, but never shows on my pillow.  Shampooing is 5 out of 7 days because of oiliness and itching and now because the darn CPAP really messes my hair at night.

I just discovered the forum attention to hair thinning and possible side effects from use of OFEV.  I guess I should read the written material that comes in the Rx  box.  I have been very successful at combing-over and kept my Frankie Avalon look about me for many years but in 2023 that tactic is failing.

I will bring up the subject with my Pulmonologist at the next appointment date… and google “biotin” for sure.

[Tony Hernandez]

Hi, Mark: I was diagnosed about five years ago and medicated with OFEV, 150Mg 2x daily. Diarhea in the hours before noon. No other side effects. I experience slight breathing difficulty negotiating slopes and long stairs. Home maintenance chores are still doable. Drive 100-mile round trip to VA Hospital for doctor’s appointments and CTScans and other studies. Also have a heart murmur (over 20 years and possibly life-long) that Cardiologists monitor because of faulty heart valve. Six months ago put on Metoprolol for heart beat control. Now in 70s. My Blood Labs are usually excellent.

I was born in 1945. Always active: skater, skiier, scuba, handball. Grew up in Midwtown Manhattan and played in the streets during childhood. Vietnam vet. My sister has also been diagnosed with mild symptoms. I read a UK study where a large concentration (per capita) of IPF is found on the north coast of Puerto Rico, where I was born and now again reside in my adulthood. There is an existing DNA lab for a couple scores of Markers for Pulmonary Fibrosis. It is not available in my locality but I have advised my two daughters who reside in the States of this fact so that they can take precautions.

I really appreciate the honesty and forthcoming of the forum members and I find the information most useful. I welcome all replies and especially from any US Military Veterans who are receiving VA attention for IPF.

[Tony Hernandez]

Hello Amigos:   I have been diagnosed approx. five years and prescribed Nintedanib (OFEV) four years at 150mg.  I experience the reported gastro irregularities daily, but much relieved by noon time, for some reason.

IPF affects me with some breathing mild difficulty when engaging sloping terrain or lots of stairs.  I do have other medical conditions:  aortic valve does not close completely, my arterial pressure is under control with small dosave Rx, my blood oxygen plummets to 83 during the six-minute walking test, and I utilize a CPAP machine at night.  Otherwise, I climb to the roof and clean with a high pressure water machine, do some electrical and carpentry chores, etc.  I was 78, just yesterday.

It is actually a worry for me that I am not in the advance stages I see reported by members of the forum.  I have a “Palliative” appointment at Veterans Affairs next month.  I don’t really get the real scoop on what I will be facing.   Other than making my Will & Testament, paying in advance for my cremation, giving away some of my books and electric tools, and installing hand rails in the baths, I can only imagine “my last days.”   I hope they do not stretch to “last months.”  I have many questions for the staff at that May meeting.

I dirve myself to VA appointments- 112 miles round trip- without difficulty.  I love to cuss out the knuckleheads on the road.  I still have a sharp sense of humor and can still entertain my family and friends with my stinging comments and jokes.

I have written my Memoirs: 189-pages, and printed to gift to friends and kin whom I cherish.

Perhaps some members can direct me to some online videos of more “terminal” cases.  I hate that term as you probably do also.  Never give up.

 

[Tony Hernandez]

It has been several months since I logged in. Usually do so in the OFEV category. Briefly, I was diagnosed in the spring of 2017 and a few months later the Veterans Affairs had taken my case and prescribed Ofev. My tests at the VA Hospital indicate my condition is stable. I do cough occasionally but often go for half a day without doing so. I am on a CPAP with night oxygen by machine. I have never used the portable Oxygen cylinders although I have them in my room. The VA deemed that my condition is not war zone related… in their wisdom.

I also have a heart valve irregularity. The VA will do further examinations later this month and make a determination to possibly perform a corrective surgery via insertion of an artificial valve via a blood vessel in the groin. I am definitely going to ponder on that intervention. I am 78 and still do all the maintenance of my property. There is mild tiredness in going up hills and slopes. In those instances my blood O2 percentage will go to the mid-80s and the pulse may rise to 115BPM. Normalcy returns in five minutes or so.

Sorry for detailing all of this, but my main theme is on the effects of Ofev. The Rx seems to have achieved the objective of stabilizing my condition, but the GIs resulting are serious. I am affected mostly before noon time. Had to give up coffee. My Family Doctor, upon hearing my repeated reports of this distress, commented that this constant diarrhea of six years would be causing damage to my stomach, and he prescribed a probiotic (Biotinex capsules) to help balance the flora (bacteria) of the stomach. The VA doctors on my case never raised that possibility. I have not had any loss of appetite or felt tired or weak since I started taking the Ofev in 2017.

[Tony Hernandez]

Gweneeth:   I hope you have had a comfortable day, this Easter Eve.  Or as good as you can expect.   I, too, am 78 (plus four days) and diagnosed with IPF these solid four years.  I get me treatments, or rather see doctors at the VA.  The hospital routinely schedules SCANS and tests.  I have used OFEV about 3.5 years, with the usual gastro side effects.  I, so far, am not struggling for breath.   I do get a bit winded going up slopes and long stairs.  So, I avoid them.  I wear a CPAP mask at night with auxiliary oxygen.  And there is a possibility of a heart valve replacement via catherer by end of the year.

Yes, I am at the interested stage of “what should I expect?”

Fortunately, I live with my sister; she is a couple of years younger…would you believe, also with mild IPF, but not on meds.  My former live-in gorgeous female partner tells me she will be there to render help when it comes to that.  We’ll see.  I have a Palliative appointment at the VA next month.  It will be my first.  I will prepare my list of questions for them in advance.

I am interested in knowing how you are coping and still prepare your comments for posting.  Dictating?  Have a secretary?   I can appreciate the effort as I maintain a couple of web sites and email friends and relatives everyday.  Oh, and you can tell that I, too, can be long-winded when it comes to messaging.

I hope to get back to you soon.   Take care.

 

Tony Hernandez

[Tony Hernandez]

Gary, I hope your wife’s surgery went ok.  I, too, have a possible aorta valve surgery pending later this year.  I am still being evaluated for that procedure by the Veterans Affairs here in PR.   My surgery would possibly be a catherer insert (groin).  The heart murmur in my case was diagnosed decades ago.

I am on OFEV and I don’t know how long I may have to refrain using it prior to the surgical procedure.  One thing at a time, I say.

 

[Tony Hernandez]

Commenting on Surgery and Ofev:   I was in pain with arthritis of the Hip.  Got a couple of shots with a couple of days of relief, but not the months I expected.  I saw a surgeon and the resultant Xrays indicated the need for a Hip Joint replacement.  But the anti-scarring benefits of Ofev were contradictory to the healing I would require following the surgery.  It seems the hip needs scarring to fuse the bone around the Titanium rod that is normally inserted into the joint.

My VA doctors advised against refraining from the use of the Rx.  The surgeon insisted on one month of discontinued use before the surgery and for two months after the surgery.  I resigned to live with the pain until another solution came along.  Somehow, in a few short months much of the pain I had endured for nearly a year disappeared.  I no longer drag myself along nor do I depend on the use of a walking cane.  So far, I have been mobile during the past six months.