I find my friends and family can't relate to my struggle w/ my lung disease

I welcome conversations with anyone who has or has been recently diagnosed with Pulmonary fibrosis. I think my close friends/family are in denial that this is terminal and it's best not to confide in them. That goes for my husband and my 83 year old mother. My mother has always been a source of significant pain. She is lacking maternal instincts!

Edited September 26, 2012 at 9:20 am

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Hi Patsy, I was diagnosed in June of this year. It was scarey when they told me that it was incurable. I did not know anything about this disease and I am still learning. This site is very informative and all the people on it are very helpful. I had never even heard of this disease in all my 71 years. Oh well, it is what it is. We need to keep going and live our lives they way we were before we knew we had this. As much as we can, anyway. So, keep reading everyones posts and you will also learn a lot. I don't think my husband knows how serious this is either. Or maybe he just doesn't think it's as serious as it is. Being terminal is very serious, I think.
Everyone on this site is willing to talk with us and answer any questions we might have. I am here for you also. Where do you live? I live in Hemet, California. Just a small town in Riverside County in Southern California. Glad to meet you, Patsy. My name is Becky.

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Hi Patsy, I am Bob, originally from New York,NJ and PA , a recent move to enjoy the better years in the South, then with a diagnosis of PF, secondary to sarcoidosis in August. Welcome to the club no one would ever want to belong to intentionally. But here we are, as Becky says, learning to live and continue on where, and how we are. Day by day, hr by hr, sometimes minute to minute.

At age 52, I am not ready to give the Grim Reaper a foothold. I struggle with the daily acceptance of how to do what I used to, once very active, now happy just to get the garbage can to the street without intense struggle. The initial acceptance for ourselves,then our families and loved ones, is the hardest.Everyone's disease progresses at different paces, so only you can judge for yourself where you are.

I know Silver Spring a little, the ex-wife's family was from Hagerstown, Williamsport, and Frederick. Nice places to be from. Considering your age and good health, may want to start considering centers of excellence for treatment, I am going to start looking into Duke down here, lots in your area.

Keep in touch, feel free to send a message, we need to be connected, keeps us sane, and a great outlet for venting, I know how hard it is to have family that is not a great support system, sometimes those going through are a better connection,especially now.

All the best, Bob the former builder

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I know it would be a drive for you but UPMC, Pittsburgh has a great program for IPF. We have a great support group and everyone is so caring and knowledgeable. You can check it out on line. It's the Dorothy P. & Richard P. Simmons Center. I think there is also a good program at Hershey Medical Center which wouldn't be too far from you. If you would like to know more, you can email me. I know it is a difficult disease to wrap your head around. I'm still trying but we just take one day at a time. That's really all you can do.

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Thank you! That seems to be my mantra these days - "it is what it is".
It's just nice to know there are others out there who can relate.

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You might want to check out the Pulmonary Fibrosis Foundation webpage. There's some good info there and lots that you can share with your loved ones to help them understand. It takes time, but most come around. ((Hugs)) www.pulmonaryfibrosis.org.

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Nice to meet you Becky and you too Bob. I did go to the site decopeg and it was very helpful, thank you
@ gclark- Yes, I hear Pittsburg has one of the best lung centers, but it is quite a drive unfortunately.
@ Bob, does the warmer climate help you? I'm not looking forward to Feb here in MD at all!

Right now my husband and I are in the middle of downsizing, which is tough because this was my families house before me. We purchased it from my Mom a d it has many memories of my fathers handy work. We have exhausted our savings since I have been unable to work and on disability this past year. There is so much to do and no energy, but I'll chip away. I've always been a "giver" and I'm somewhat put off that only one family member has offered to help us. Oh well, such is life. At times like this you really can only depend on yourself. My husband tries as well as he can, but he too still has anger and angst. I have to realize he didn't sign up for this, but he too is having a tough time since he was laid off two weeks ago (he still has two weeks to go) now we will have a huge cobra payment too. I'm now so thankful that my family and grandparents instilled faith in us.... even during times that I questioned in my earlier years - I knew to "hand it over".
Thank you again!! I won't be as down next time, just a lot going on right now. Thanks for letting me vent.

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Keep the faith, Becky! Thanks for the support that this web site gives. It is very difficult to talk to friends and family about IPF. They don't what to say or do. I am not one to talk about myself for I have always been an optimistic person. This disease drags me down so I keep looking for that rainbow, etc. It is great to check on this site to hear others and their experiences. Each one of us have a different take on what is going on with this terrible disease. All I can say, Becky, is to continue airing your frustrations and experiences. We are here for one another!

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Patsy, I know things seem bleak but somehow God will pull you through. Three years ago my husband lost his job and we had those hefty COBRA payments for 18 months. Then it ran out and he still hadn't found a job. Unemployment had run out and we had to wait for him to hit 62 to collect social security. That's our only income now. A year ago we had no choice but to walk away from our dream home in TN and move to FL to be closer to my son and his family. Needless to say our savings is long gone, our home in TN is still sitting there empty a year later despite several notices that they were going to auction it, I rarely see my son or grandson, the hubmonster just got a ticket last week for expired TN plates (we couldn't afford the $400 to change them over), I still have no insurance, was denied disability, SSDI, Medicare and Medicaid. But.... God is good. I've been able to get most of my meds either direct from the manufacturers at no cost or under walmarts $4 prescription program. I found a PCP who charges on a sliding scale so I only pay $20 a visit, I found a hospital that will treat me (and treated me quite well) under their special assistance program, and some people from church pitched in so that we could get our FL plates, which the hubmonster got today and they are proudly displayed on the car. When it came time that I was no longer able to walk on my own, there happened to be an old motorized wheelchair in a closet at church and some guys refurbished it for me and gave it to me the weekend of my birthday. I used it only at church at first but then there is a couple who have two handicapped vans with lifts and they let me use the older one. I never said a word about any if it - God just provided and put these wonderful.peeps in my life. WE thought we were moving down here to be closer to our blood family when in fact God brought us here to get plugged in with the right church family.

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I am so happy the way things turned out for you when you moved regarding your church family. Yes, I agree. Sometimes your church family treats you better than your blood family. That's because the love of Jesus. I will pray for you and everyone else with this disease.
I have applied for a scooter because my doctor thinks I should have one. I guess I will be needing one eventually. Right now, I don't think I need it, but you never know what tomorrow will bring. It's good to be prepared, I guess. Anyway, that's what my doctor thinks. I just feel like I'm at the end having to use the scooter. I don't know, maybe I will feel differently when I get it. Will let you know. Anyway, I hope your family will eventually see things differently and will change their minds in visiting you or in whatever way you are happy with. Can you and your husband sit down and talk to your son? Would that help? Does he know the seriousness of your disease? Keep me posted. Becky

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On the scooter: Be aware that if you expect medicare to pay for it, the rule is you must need it to GET AROUND INSIDE YOUR HOUSE. They could care less about if you need it to be "out and about." My understanding is that medicare will send someone to your house to approve/deny you on the scooter. So before that visit, you will need to have furniture moved and doorways clear, so that a scooter can safely operate INSIDE your house. If you can get from the bed to the toilet to the kitchen on your own, you will likely be denied. Be prepared. Most folks end up going cash out of pocket. Also be aware of another thing. If you are successful in getting a scooter from Medicare, it likely will not be a small, "travel" scooter that is easily toted around on the backseat of the car.. It will be monstrously huge, and you will either need a van, or will have to mount a lift platform on the back of your car. This isnt something just screwed onto the bumper. It is welded to the drive shaft and costs around $3000. In my case it would make the car too long to park inside the garage, and the scooter would get stolen off the back, as I dont have a driveway in front of my house, just a curb for "on the street" parking.

I have recently been trying to get a scooter too, and have discovered all of these unpleasantries the hard way. It isnt as easy as it sounds. My person at kaiser, a doctor who I had never met before and saw me for about five minutes, denied me because "I can walk 100 feet." Didnt matter that I turned blue after that 100 feeet, and that I had to stop to breathe EVERY 100 feet.
Welcome to the beauracracy.

:-) Katrina

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I'm so grateful that the church stepped up with the wheelchair because with no insurance, I wouldn't have had a chance to get anything on my own. As for my son.... yes we've talked to him many times and just get met with the "I dunno" and shrugged shoulders. He was at the hospital, along with Oliver when the doctor was brutally honest about me going home and getting my ducks in a row. He didn't think I'd make it through the summer. My prayer is to make it through the holidays but that's a lofty goal at best. The bod is failing fast. Sigh. I'm not giving up hope for a miracle or giving up on the fight... this ol' girl still has some fight left in her but I am getting tired. : (

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Thank God for all of HIS gifts. We too found our Church to be our family. As our health changed. Our lifegroup helped us get a handicappped van. My husband is in a powerchair. He can not walk. I too ran out of breath. Sure they have the powercarts at the store. But I can not make it to the door. My pulmo dr helped very little. He did not want me to get scooter. He said I would get lazy. Even after I told him of my sats! But my primary Dr wow she helped me get scooter and get on disability. God is good!

I also sent this letter to people on FB. I can't hold a conversation. Without getting winded then coughing and gasping and overcome with fear I won't be able to get that next breath. Some have now told me they read the paper. My blood and inlaw family. None have acknowledged thier reading or understanding better. I feel fine right now with my meds and exercises. As long as I do not exert or talk my sats and breathing remain stable.

I did not get everything to medical center in Dallas. So I am going to have to reschedule. I just did not have energy to get things taken care of. Also I really did not want to do all those test that wear me out right now. I think I am getting paranoid or anxious knowing what can happen. My husband wants me to get off anxiety pill. I want to see about changing it. I feel I need it so I won't

What you need to know about idiopathic pulmonary fibrosis, a fatal lung disease

Posted: Friday, September 21, 2012 1:00 pm | Updated: 4:33 am, Sat Sep 22, 2012.

(ARA) - Most people age 50 or older might not be concerned if they experience shortness of breath from walking or doing everyday activities. They may believe this is happening because they are out of shape or have another medical condition. Most do not assume that shortness of breath might be a result of a life-threatening illness like idiopathic pulmonary fibrosis, or IPF.

In fact, most people have probably never even heard of IPF. For this reason, organizations that support patients and Boehringer Ingelheim Pharmaceuticals, Inc. are working to raise awareness of this deadly disease.

IPF is a severely debilitating lung disease that causes swelling and scarring (or fibrosis) of the lungs. Over time, the disease worsens and breathing becomes extremely difficult. The lungs lose the ability to take in and move oxygen throughout the body. Vital organs, like the heart and kidneys, do not get the oxygen they need to work properly. Patients are left breathless and exhausted.

Symptoms, such as a dry cough that won’t go away, chest pain or rapid weight loss, are not always present until IPF has worsened, and the damage that IPF causes is permanent. There is no cure for IPF and currently, there are no FDA-approved treatments in the U.S. Sadly, approximately 60 percent of patients with IPF die from the disease within two to five years of diagnosis.

Research shows that IPF may affect as many as 100,000 Americans, though the exact causes of IPF are unknown.

With no FDA-approved medicines for the disease, doctors aim to improve their patients’ health-related quality of life and may prescribe oxygen, rehabilitation that can help patients breathe better and lung transplant for appropriate patients.

IPF is considered a rare disease and most doctors in the U.S. are unfamiliar with its signs and how to diagnose it. Doctors must first rule out other cardiovascular and lung conditions, such as chronic obstructive pulmonary disease (COPD) or asthma. More than 50 percent of IPF patients may be initially misdiagnosed and it can take up to a year for a correct diagnosis.

More advanced knowledge of IPF can be found at a select few specialized lung research centers across the country. It is crucial that all doctors understand and become more aware of IPF so they can in turn help patients better manage their disease.

“We have learned that in addition to an urgent need for approved IPF treatment, there is an equally urgent need to educate doctors and support awareness efforts,” said Tunde Otulana, MD, pulmonologist and vice president, Clinical Development and Medical Affairs, Respiratory at Boehringer Ingelheim.

This September, the U.S. observed the first National Pulmonary Fibrosis Awareness Month and Boehringer Ingelheim is committed to supporting the efforts of groups like the Pulmonary Fibrosis Foundation (PFF) and Coalition for Pulmonary Fibrosis to drive greater awareness and understanding of this disease.

To learn more about IPF, please visit http://www.pulmonaryfibrosis.org or http://www.coalitionforpf.org.
have a panic attack.

Here is copy of what I put for friends to see.

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That is one HUGE reason why we are moving to the shore. I found the most spirit filled congregation and they are more loving then my own family. It's quite a task, but God is the one leading me now!
I invested in a small elec. bike so I could still get out and about. It was the best gift I ever bought myself (2 yrs ago).

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SOMEHOW I was talking about the fear of having a panic attack. My sentence started........... "I feel I need it so I won't" Then the rest of the sentece........... "have a panic attack" ended up at the bottom of entire page. So maybe this clears up any confusion.

I am happy you will get to use your new couple year old electric bike. Is that something like a Moped? Where you can use your power or the bikes power?

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It's like a reg bike, but you can plug it in. I couldn't walk from the campsite to the bathroom because of distance, so I saved my pennies and ate PBJ for two weeks. You plug it in to recharge and it has a thumb throttle!

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Be aware of the difference between a "scooter" and a power chair. It is true as Katrina says that Medicare does care if you can't go outside and much of what she describes as pertaining to coming to your house and the lift for the car, etc, applies more to the power wheelchair than a scooter. I found that out with the powerchair criteria but maybe they also do it for the scooter???? The scooter costs so much less than the powerchair (around $1500.-$3000.) and Medicare will not pay for both. I bought myself a scooter, a small 3 wheeler which i got on sale for less than $500.00 and will let Medicare pay for the power chair when the time comes. The scooter I have dissembles into 4 sections which easily fits into the trunk of our car and no attachment to the car is needed. I got mine from Kohll's medical supply and happened to be there the other day and noticed that they again are selling it for $479. plus tax, only had a few left in this store. I suspect they may be opting out of the 3 wheelers as the rest were all 4 wheels, giving a little more footroom. List price on the scooter was $995 I think. Anyway, I love the scooter. Just need to charge the battery and go and easy to manipulate. My husband said he needs to put a governor on it as I move around so fast! The scooter can be used either inhouse or outside.

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I have a scooter it does the job for me. It is lightweight enough it can go in trunk. Chuck has the powerchair. Insurance has guidlines on purchasing of "Wheelchairs" . Be sure you get what you need. It maybe 5 years before can be helped with purchase between. We got the transport wheelchair first. I could push Chuck, before I got sicker. Then after he had stroke and unable to stand. He had to haveheavyduty powerchair. I DON'T need big powerchair. The scooter chair is great for me. I wanted the 4 wheel. But insurance had to have where I could drive in house if needed. We live in mobile home. Hall at oven to little to turn for 4 wheel. Chuck can turn his powerchair. Oh well it is zippy and light weight. Both his powerchair and my scooter fit in van at sametime. That is an added benifiet.
God provides what I need. Not necessarily what I drool over lol. I did tell the medical supply owner. I'm going to find a way to Hot Pink and Bling my scooter. I may be terminal but I DON't have to be sad. It will be my cadillac excalibur. It will be my pamphlet sharing testimony answer sheet. As long as I follow rules no exeritition.

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Ha... some of us blinged up our "rides" last year for football season... Mine was Da Bears and another friend was the Packers. We had a ball (no pun intended) doing it. Can't wait to see what we decide on this year or whether we'll just expand on last year. : )

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Hi you mad lot! I reckon you would be a dangerous combination in the one room, if you and your racing gear could all fit, or even living in the same street could be chancy? It's a safe place to vent isn't it? And great to end with a smile on ya face.

Hugs from down-under
Graeme from Melbourne Australia

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hmm.. it's not terminal, unless you call life terminal. There are options.. some go into a kind of remission for years.. others get lung transplants.. some get run over and killed by pickup trucks long before any disease/condition can get them.

Probably best to start thinking positive.. and allow friends and family to too.. that's the best thing, in my opinion, for everyone... and deal with what comes.. from PF and other things in life.. as they come... or living your life.. PF is a part of it.. not the all of it.

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