[Mike Mses]

Alan — I tried to have the VA cover my pulmonary fibrosis two years ago.  I even filed an appeal and included pictures.  Still denied.  I am checking now because of the PACT Act.  It covers this but only for Middle East Veterans.  My Legion contact is filing a supplemental claim to my original claim.  Next step will be to call the White House VA Hot line and let them look into this.

The VA recognizes that burn pits cause IPF and I have no idea why they are not including Vietnam Veterans.  I also added in my claim the trash burn pits at base camp, the human waste burning, napalm use and even extensive firefights where a cloud of bad stuff forms afterward.

I was lucky enough to receive a lung 20 months ago, but this condition will still cut my life short in the not topo distant future.  I wish you all the luck in your quest to have the VA cover your IPF.  Mike M

[Mike Mses]

Christie, Charlene

I had a single lung transplant on March 16th 2021.  I had asked my Team in January if I should get the COVID shots and they said yes.  Accordingly, I got my shots at the VA Lexington on January 16th and February 6th.  Lately I have heard that the shots may not have been effective because I was on Ofev during this time.  My team just recently did bloodwork that included the COVID antibody test.  I do have the antibodies, so the shots were effective for me.  I do feel so much better and safer, but like you, I will still be wearing my mask when out.  My Team wants me to only wear the N95 masks for at least the first year at a minimum.  By the way, I was prepared for worse-case scenarios on my transplant after doing a massive amount of research over the past two years, but still staying very optimistic that I would do good.  (I will be 72 next month.)  I am happily doing very well, out of the hospital after only 18 days and no complications other than a pesky infection that I am treating at home.  This site has been sooooo very helpful in preparing me for this massive change in my life and what to expect during my transition.  Thank you to all those who participate.

[Mike Mses]

I was diagnosed in June 0f 2018 and told 3-5 years.  I probably had this in 2014 or maybe earlier.  Didn’t know until I went under for another procedure.  I was initially on oxygen when sleeping, but upgraded to 24/7 in 2019.  I am currently on 5 lpn pulse when out and 4 lpm when exercising.  I was put on the transplant list in January 2021 as my doctors wanted me to have the surgery when I was more healthy.  I will be 72 in June and have a positive outlook on things.  The 3-5 year prognosis is debatable, depending on when they actually catch this.  Stay positive and hope for the best.  Listen to your doctors.

 

Mike Moses

[Mike Mses]

Morning Everyone

My PF has progressed some where I am now on oxygen 24/7 at 4 liters.  Did some additional testing at University of Louisville in December and it was decided that it is time to be put on the List.  They estimate somewhere around 2-4 months for the transplant, then I will be recovering for anywhere between 3 months, maybe up to a year depending on many things, including being 72 this coming June.  Their thought is that they want me to do this while I am still if pretty good health to make recovery easier.  Kind of scary, since I have never spent the night in a hospital before (hell of a way to start!).

We are planning a getaway to Florida in March for a week or two.  My transplant center has said that if I feel good enough to go, just go and have a good time.  They will just take me off the call list until I notify them that I am back.  They do not want me to sit around just waiting for the phone to ring.  I will get my second COVID shot on Feb 6th, but it is still a little risky getting out among people.  Anyone else have similar concerns?  I am OK moving around and shopping as long as I am on oxygen, plus doing rehab 3 times a week.  Getting tired of sitting around watching old TV shows for most of the past 18 months, but I don’t want to get real sick and jeopardize my transplant.

Mike Moses

[Mike Mses]

Hi Cindy, all

I’ve been taking Ofev off and on for the past two years.  (Probably has PF for at least 5 years before that.)  Insurance mandated I switch to Esbriet, but after 6 months they let me switch back to Ofev because of the side effects.  Loose movements and some nausea is common, but some Imodium helps.  My taste has changed dramatically and I do not take the “joy” of eating the way I used to.  If I am have a special occasion, like birthday or seeing the kids, I sometimes skip a day or two just to feel normal and enjoy myself.  I am not advocating this, but it’s the only way for me to cope sometimes.  I do have an occasional beer, wine, or drink.  No one has said not to until I have a transplant.  I have been doing my usual tests this week and will see my pulmonologist on Friday to see how I am doing/how fast it is progressing.  I have my fingers crossed.  I have been evaluated for new lung, but they are waiting until it gets worse before putting me on the list.  I’m 71 now, and if I stay fairly well for another 4-5 years I may age myself out of a transplant.  We’ll see.  In the meantime, if the Ofev slows this down I am all for taking it and putting up with the side effects.

[Mike Mses]

@kathleen-greco

Kathleen

I’ve probably had PF since around 2015-2016 and it was not diagnosed correctly.  In June 2018 I broke my back twice (bad bones I found out).  Doing that time I had very severe pain for months and my O2 fell to 66 the first time they tried to fix my back.  I believe that I probably had some exacerbation then because my breathing, etc. got worse after that.  Since then I am fairly stable, but surely getting worse slowly.  I’ve been on O2 while sleeping and exercising since 2018, not 24/7 yet.  I do use O2 going up steps, walking anything more than around the house, and at 3-4 while exercising or walking a lot.  I guess so far I am fairing better than some people.  I have done the evaluation for a lung transplant at the direction on my doctor.  They want to do this early on before you get real bad off because it is taxing.  Once on the “list” they will wait until I get worse before moving me up and maybe getting a new lung or two.  It may be a while, or something else may get me first.  I’m not rushing anything.  I do take extra precautions not to be around sick people and do everything possible not to get the flu or pneumonia.  Been mostly in the house for almost two months now.  I wish all the luck in the world.

Mike

 

[Mike Mses]

William

Initially there were many things that upset my stomach.  For the past 10 months or more I have had on most days cereal with skim milk and bananas with no side affects.  I take the Ofev after the cereal and then have a piece of toast or a donut afterward.  Taking Ofev in the middle of a meal is important.  Has to be a full meal for me.  Probably my choice for breakfast because I to tolerate the Ofev better with it.  For a while I also did yogurt to keep the belly calm.  My side effects were so bad last Fall that my Dr put me on 100mg instead of 150mg.  This month I going back to the 150mg dose, and I hope that I do not develop any ill effects from it.  I believe it is a lot of trial and error with everybody to see what works for you.   Hope this helps.  Mike

 

[Mike Mses]

@johnl

Hi John.  My sleep schedule varies, but I usually have breakfast around 6 or 7 am, sometimes as late as 8 am.  My usual breakfast has become a bowl of Cheerios with a cut-up banana and milk.  Sometime I will have a piece of toast or a small donut afterward.  I take my Ofev about 2/3 through my meals.  Dinner is usually between 10-12 hours later.  No ill affects.  I agree that a couple small snacks during the day keep something in my system until a decent dinner.  Often only two main meals a day with some snacks.  I only take the Imodium if I have a loose movement, which is not frequent if I eat right.

On the cost of the Ofev, Open Doors helped me get this at no cost for about four months while I was waiting on my insurance to authorize it.  Unfortunately, my insurance liked Esperiet better because it was cheaper.  After about four months my side affects were so bad that they did approve the Ofev.  Everything seems to be good now.  I am lucky to  have Tricare for Life as my medication coverage, so I only pay $28 a month for Ofev.

After I get three more tests in May I am hoping to be put on the transplant list in Louisville.  We’ll see.

 

Hang in there and always be positive.  Mike

 

[Mike Mses]

@melbaker

Mel

I was diagnosed in July 2018 when I had IV sedation and my O2 level fell to 66.  Looking back over health records, I was short of breath in 2015, but it was pushed off to being out of shape.  I’ll be 71 this coming June.  I am on Ofev, but only the 100 mg for now as the 150 mg was causing too many side affects.  I was on Esperit from December-April, 2018 when insurance wanted to cut costs.  Super bad side affects with that, including severe nausea and diarrhea, no appetite,  and no sleeping.  Went back on Ofev and effects seem under control now.  I have some Cheerios with banana and milk in the morning, then a decent meal at night, and a light snack for lunch.  Overly important to stay as active as possible.  I am currently on O2 when I sleep, exercise, or moving around a lot.  So far, I seem to be holding y own while the disease moves slowly, I think.  I am working on getting on the lung transplant list to prepare for when my vitals get too low.  I did have a 3.5 day evaluation at Uof L in March, but need a couple more tests.Right now, everything medical is shut down, so getting on the list probably will not happen until late summer.   I don’t remember a metallic taste, but I certainly remember becoming nauseated at the sight of food, even on the TV.  Hang in there, as this all will pass as you get used to your meds.   During this crisis I am staying strictly in the house and my wife cleans every little thing that comes through the door.    Mike Moses, Hebron, Kentucky

[Mike Mses]

I went to Washington DC last Friday to see the kids and then to be with other American Legion members downtown to visit our representatives and talk about Veteran issues.  I was already uneasy about the crowds and the virus, and washing my hands every few minutes or so.  On Monday morning the President was talking about suspending all unnecessary face-to-face meetings, Federal agencies were preparing for everyone teleworking, there was a church and school closing, and the TV was showing people in masks, etc.  We got spooked by all of this, especially since I am 70 and only have 50% lung capacity left (IPF).  We certainly did not want to ride on the Metro.  The hotel we were staying at had all the employees wearing protective gloves.  We decided to come home early and stop being around people.  Maybe we were being a little chicken, but I’d rather be safe than sorry and be at home.

I did have my evaluation last Monday through Thursday.  I believe that I look to be a good candidate for transplant, but I hope to find out for sure by tomorrow.

Mike

 

[Mike Mses]

Zee ( @mb2285 )

I was diagnosed in June 2018 when they tried to repair three fractured vertebrae under IV sedation.  O2 level fell to 66 and I was told to see a pulmonologist.  By CAT Scan and PFT there was no problem diagnosing me with IPF.  I am still on O2 only when sleeping, moving around a lot (like shopping), and when exercising.  I am holding my own, but you never know when this disease will take a plunge and make me totally immobile.  I will be 71 in June.  I was recommended to have an evaluation done to see if I would be a candidate for a lung transplant, which I am doing this week.  I am waiting on the final results, but everything so far says that I am in good health except for two lousy lungs.  If approved, I will get on the transplant list in an effort to have another 10-plus years with my family.  My advise — Checkout another doctor.  My GP misdiagnosed my condition several times over a three year period.  My pulmonary doctor is excellent and there was no question from the start as to what I had.  Hope this helps.

[Mike Mses]

Charlene — I was on Ofev for 5 months and my insurance refused to pay for it over Esbriet.  Upon switching over, my diarrhea got worse, the nausea increased, and I wasn’t sleeping.  After maybe 3 months, my insurance agreed to switch back to Ofev.  The symptoms got better, but did not go away.  My doctor suggested that I take a 2-week break from all meds and then start again with Ofev.  This seemed to work.  I have been back on Ofev since last July now and I’m tolerating it well as long as I eat the right things.  Also, taking the three pills a day is easier than taking twelve.

Dennis — What was your age when you received your transplant?  I will be 71 in June and am planning on doing the 3-day evaluation in two weeks to see if I am a candidate.