Pulmonary Fibrosis Support Group

i have LCh. they thought for the longest time it was PF. Connfussion, pain on ribs, eyes just go blurey at times, headaches ,and memory loss with out a hang over. Just feeling like there is no up side or future. Self pity is killing me . So I found this place and was thinking support would be nice. How does one get pst living with the "New Normal?" any who feeling better that comes and goes and not wanting to share whats up between my ears... seems so selfish to have a bad day when I may have few left... Any who... any advice on how to be stronger and positive and greatfull would be loved. George

Hi George. So sorry to learn of your LCH illness; after looking it up on line I realized how truly challenged you are, so I understand your frustration and feeling of self pity. I went for 2 years misdiagnosed, couldn't breathe or walk 10 feet without running out of oxygen in my lungs. The local doctors were not helpful, some just blew me off. It got so bad that I felt I couldn't go on, felt I was dying, so I went to National Jewish Hospital in Denver, CO, which specializes in lung and related immune related diseases. They diagnosed me, told me the bad news and recommended a treatment plan which is now being followed up by a good doctor I found locally upon my return. I have an incurable lung disease, along with an auto immune issue, which exhibits most of the symptoms you noted, confusion, vision, memory loss, muscle pains, exhaustion, and the worst being the inability to breathe often. Just having a valid diagnosis made me feel more able to cope with the situation,and the ability to prepare my mind and do what I can on my end to preserve what health I do have, like eating the foods that nourish my body. So I am currently being treated for "quality of life", although I don't know how long my actual life span will be. Since "it is what it is", I feel the best way to deal with the illness and whatever it brings is to be prepared. 1) Make sure you have a "good, interested, compassionate doctor .. if not, keep changing doctors until you get the right one .. not all doctors are dedicated; 2) have your own set of medical records should you need to change doctors (they are yours and should be free as long as you note that they are for on-going care); read the medical records and research any terms or info on the internet so you understand what you have and what potential symptoms you might experience from the illness and/or medications, believe it or not, this has helped me to cope with some pretty bad symptoms by being mentally prepared; 3) be thankful for the good moments you have, no matter how brief, treat yourself occasionally to a favorite dessert or food and think of it as "fun"; 4) when you're really down, reflect back on a wonderful time of your life, close your eyes and remember every wonderful detail until you find yourself smiling; it also helps to do this a little before you try to go to sleep as well. 5) If you're terribly depressed, ask your doctor for something to take "the rough edge" off your anxiety, I take a very low dose of Xanax (which I break in 1/2, so we're talking "mild") when my nerves get the best of me. Most MD's will not give a prescription for something like this, but almost all insurances will cover you for mental health services to see a psychiatrist that will write you a prescription. I personally do not care for most of the other meds like zoloft, lexapro, etc., but having a way to calm myself has been a real gift for my family and myself. Actually, from everything I've read, it is highly suggested that anyone suffering from our type of serious illness should consider mental health support services. 6) If possible, try to have all important documents and records in order so as to help your family obtain care for you and carry on with necessary matters should you get worse; I did this first thing because I felt it is important not to burden my family with trying to figure out who I owe payments to and what to do if I get worse, 7) Remember, each day is a gift, and when you see someone else, especially young children suffering worse than you ... and there always are some, just say a prayer of thanks for each day and ask for the courage to find the good in it ... and the days that you can't, just get through it as best possible. I hope some of this info was helpful. Take care, you'll be in my thoughts and prayers.

I was diagnosed with IPF about 4 years ago.
I'm on a cpap and oxygen at night and oxygen as needed during the day. Just tapered down from 60mg of prednisone to 10mg, and I'm to stay on the 10mg. The Dr. raises my dosage of prednisone periodically when I get worse. I've been noticing a pretty bad memory loss. I start to say something and completely forget what I was going to say. I have developed a really bad cough, and that makes it difficult to go out. I get breathless just walking through the house or taking a shower and getting dressed. Can't clean my house anymore. I have an appointment at the National Jewish Pulmonary Hospital in Denver, but I'm going to cancel it. I believe it is hopeless to go. I can tell by the way I feel and all the research I've done that there is nothing they can do. I had a one car accident last week - only my car got hurt. I believe I blacked out and that is what caused it. It was so unreal. Now I'm afraid to drive. I would like to know how bad this all gets before you die. If anyone has had a family member die from this please tell me what to expect - I desperately want to know. Drs. just don't want to tell you anything morbid, but I really want to know.

Oh Plangston! Don't give up. If your insurance will cover it or if you can afford it GO to Denver's Nat'l Jewish Ctr. My insurance wouldn't cover it, and we had to spend our savings to go there, but they saved my life. I suffered horribly for 2 years and wanted to die at times; and I could feel my body dying more each day, but my husband insisted we go to Denver this last July. I was diagnosed with IPF as well, a treatment plan was recommended and they conferred with my local doctor in Fla whom is currently helping me stay on the treatment and meds. Before Denver I felt like I had no life left in me, but now even though I have some tough times, I can watch tv with my husband, cook a little, even do minor house work a little if I rest in between activities. I was on 40 mgs of Prednisone, but now down to 20, plus am also on QVAR, an inhaler which I believe is a form of Prednisone but really helps me to breathe better , and antibiotics. . I know my expected lifespan is shorter because of the illness, but have no idea if it is 1, 3,or 10, years; but now that I have some improved quality of life I want to live each day possible. It breaks my heart that you think of giving up, and I hope you kind find the "fight" and inner strength to keep searching for help to keep living with some quality of life worth living for. My prayers are with you.

Alleneirb, Thanks for your reply. My appointment at the National Jewish Pulmonary is in December, and I have a bad feeling about going to Denver that time of the year. I get pneumonia so easily, and I don't like flying - especially in the winter. I'm going to try and change it to sometime in the summer, and if I'm healthy enough at that time I will probably go. I just feel like this thing is progressing fast,and it's depressing. You have a good attitude. I wish you God's blessings.

I know how you feel about flying in winter to Denver, it can snow off and on winter and into spring, sometimes up to Easter, but it also has a lot of really nice days as well. The Denver airport has wonderful services, and seem to go out of their way to see to peoples' needs. NJH has a travel group that can help you arrange the services you need upon flying into Denver, or Denver Airport also can help you as well If you need oxygen upon arrival, you can prearrange it when you make your reservation, they also have an EMT crew available to administer it if not prearranged, but needed. I wasn't on oxygen before I went there, although should have been. NJH (Nat'l Jewish) put me on oxygen once I saw them, it was such a relief, the first time I had been able to really breathe in over 2 years! When you are at the NJH facility they provide you with a portable oxygen setup so you don't have to be using your own, which saves some money, they help make sure you have all services you need where you're staying when not at the hospital too. It would be so great if you could go before summer, I know for me, every day that went by was critical, and it sounds like it is for you as well. I was supposed to get tested and go on oxygen once I returned home from Denver, but getting the care I need in Florida has been challenging, and hope to be on oxygen in November, but for now am on Prednisone treatment (which has had its difficult side effects to deal with, not to mention side effects of antibiotics that have been problematic, and recently added an inhalant called QVAR; but despite the side effects these meds have enabled me to gain back some of my life and given me the desire to hang in there. I have days that include terrible moments and ok moments ... and don't always have a good attitude, but since I didn't get to vote on having this dreaded illness, figure I just have to get through it one day at a time. I wish you the best, will be praying for you, and hope you stay in touch, and maybe we can do a "support group hooray" once you get a treatment plan in place that might make your daily life better.