I was diagnosed with IPF last December, and have been dealing with it's issues since then. I've noticed several threads that are close to this issue, and posted replies on them, but several are 'old' and may not be seen so I opened a new one. So that you know, I'm 45, have no other diseases, and have been tested for nearly everything under the sun. My single claim to fame is that my lung biopsy tissue was sent to the Mayo Clinic and stumped them too... My lung capacity is at 42% of normal, and I'm on night time oxygen and daytime as needed (using more now that in the beginning). I'm taking Actimmune (interferon gamma B), 10 ml of prednisone per day, and Pulmacort.
On the lighter side I love rock hounding, cutting and polishing rocks, and wire wrap jewelry making, fishing and camping with my family. In case the rock stuff raised a red flag, no it's not sylicosys (sp?) or 'rock dust disease' I started that after December and always wear an industrial mask. I have good days and wonderful days, and my lungs have tough days and good days ;)
In short I'm doing great, and started this to try and help others who have this in their lives (one way or another) to have wonderful days too!

Hope to help!

Jeff

Hi Jeff, you will recognize me from the other thread on ipf. I am just feeling very depressed about the whole issue. They did a ct scan and saw a mass but when they went in to biopsy it, it had gotten smalller, so they wouldn;t do anything, said it was probably just fluid. So now he doesn;t want to treat me at all?? I still can;t hardly walk 50 ft without stopping to catch my breath. And if there are steps.............. Just seems like there ought to be something they can do to make it a little easier for me to work. Okay I am whining now.....Sorry. Let me know your opinions. It is nice to have someone to talk to about this. Thanks.

Yup I recognise you and no your not whining! I'd be very frustrated too! Will your insurance let you go to another Doctor, to get a second opinion? I'd check that out. It's good that things were smaller, you may be earlier in the process...?... I hope so! :) From what you've said though I bet prednisone would help remove some of the inflamation - that's what would change that fast without treatment, and you Doc maybe figuring that you body is attacking and clearing it up now. What type of work do you do? Is there a way to lighten the stress on you for a bit, while you work through what's going on? Oh! I've been taking a Vitamin B complex and also magnesium, I started these after reading about the antioxident benefits they have, and my Doc. said "Great!". Both of these are soluable so your body keeps what it can use and voids out the rest through the kidneys. Don't go takine mega doses though - too much of anything ins a bad thine :nono: When you talk to the Doctor again, even your own have them do a 6 minute walking test. What they do is put a oxymeter on your finger and set you up with an oxygen tank. Then you walk back and forth - at your own pace (just normal) and they see what happens with your oxygen levels over the 6 minutes. To keep mine normal (above 90% saturation) we had to turn the oxygen up to 4 liters, my perscription was for 2 liters - as needed and at night. I can tell you that having the oxygen makes a ton of difference! I'm not a power walker by any means but I can get around, and as you saw I get out camping and stuff - though I'm glad my boys and wife do the heavy stuff :) Liquid oxygen tanks come in two sizes (4 hour and 12 hour aprox.) even your general practice Doctor can do a 6 minute test and prescribe oxygen if needed, in fact it was my GP that gave me the prescription since I saw him first. make very sure you get a flu shot and a pneumonia shot this year before things start going around too! Also you need to learn cold avoidance, mostly wash your hands often and don't rub your eyes or nose, etc. All of that will help you protect what you have now!

Hope that helps, ask more questions if not :)

Jeff

So Runnercb - any updates?

Anyone else want to talk about IPF?

:)

Jeff

hi, not really much change. Haven't done muchbut wait and get more depressed. I am down to working 4 days and couldn;t even finish that today. Anwyay, I am hanging on for the moment. How are you doing?

I too have up and down days, but having oxygen helps me get more done than I might other wise. What about talking to your regular Doctor about this. I guess I'm assuming that it's general fatigue we're talking about, but I don't know. Is that it? You Doc. will have an oxymeter that goes on your finger and will tell the relative oxygen in your blood as well as you heart rate. Get him to put one on you and then walk back and forth at a normal pace in a hall way for 6 minutes, watching what the meter does. It's better if they can have some one do it with you, pulling a oxygen tank, and with you wearing the canula so that as you oxygen level drops they can turn on, then turn up the oxygen level to keep you blood oxygen over 90%. The helps to establish the level of oxygen needed while you are active. Mine is at 4 liters when just walking at a normal pace. The only way to maintain your muscle strength and any sort of fitness is to be able to get out and do stuff. Oxygen therapy can help this and is not habit forming :) Oh I guess I wrote some about this earlier, sorry about the repeat! I would push to have this test done though if I were you. What type of work do you do - construction? (I seem to think so). So are therre alternative things you could do at work that don't take as much energy? I do know what you meen - I've had 3 weeks in the last month that I only had 24 hours of billable work for *sigh*. But I got a lot done in that 24 hours :)

Hope things improve for you,

Jeff

Yes you mentioned this test before, same as what they call an "exercise test"? I haven;t decided what I should do next. Get an appt with my primary doc or try to see a different pulmonary spec. Guess the problem with that is I would hate to go through the tests again, that the other spec has already done. I have a hard time making decisions. Just one of my many problems. Thanks for the advice, I will work on it. Hope you are having a good day.

Yup things are great for me today, and my lungs aren't bad either :) (I decided a while ago that I'd not let what kind of day my lungs are having choose how my day was)

Hmm, I'd have a tough time deciding regular GP or new Pulminologist if I were you too. You could try calling your current Pulminologist and asking for a copy of your tests, and if they don't want to give them to you (some times they have trouble with this) then tell them that you're getting a second opinion and will have the other Doctor request the tests results from them. Either way they are your tests, you paid for them, so they have to give them up. On the other hand redoing some of the tests maybe of benefit since the results may be different and help with diagnosis...
Going to yout Primary Doctor will limit what they do to the 6 minute walking test probably, but could result in an oxygen prescription.... Hmmm not a clear do this from me is it ;) Sorry, wish I were more helpful

Jeff

runnercb - haven't heard from you in quite a while - what's up???

Any one else interested in talking about IPF or Pulminary Fibrosys in general?
Just tring to track folks down and see if we need to keep this thread alive :)

Jeff

Hey Jeff, how are ya??? I hope you and the rest of you guys are doing better. Jeff I was wondering is there any way i can get your email address or by i.m. My email address is [ please read and follow the posting rules - no emails ] Give me a reply back when you have the time.





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Sorry Tom - looks like off line contact isn't allowed - though personally I'm ok with it. I've just finished the pre-testing needed to get on the lung transplant list, and as far as I know I passed with flying colors (all looks well). I've now got to wait for my Pulminologist to set up the next meeting and we'll talk about it. It looks likely I'll be lised in the next month or so and the we'll see from there... I want to get the transplant over so I can get back in shape soon. Lots of places to hike and camp, scuba dive, and others I want to go to or do....

:)

Thanks, Jeff

Hey Jeff, how's it going? Hope your feeling better. If you dont mind me asking how old are you? My father is 60 years old and I am 24. It's been really hard for me lately. I took my dad to the doctor and it seems like his lungs are getting worse. There were couple times i thought he was near death and it terrified me. For a little while the doctor didn't prescribe him prednisone but finally he did after his health gotten worse. But after the prednison he seems a little better which im happy about. It's really scary for me I am my mom's only son and i do have a brother but he is not in good terms with our dad, so i half to handle this all by myself and it's hard. I even had to quit my previous job so i can take care of him and my parent's business. Jeff i was wondering how do you apply for a lung transplant???? And also how do you qualify? Is there actually a age limit or what not?? My doctor told me that the ucla medical hospital does the procedure, but he wants to know how my dad will feel in a week or so. Also Jeff what are the effects of prednison? I do know it is steroids, but does it actually help? Does it prevent the lungs from getting worse or it just slows down the process?? Just for a week now my dad is on O2. We have the big 02 box for the house and a tank of 02 to go outside. But my dad cannot walk much or hell lose his breath even with the oxygen tank. Does this happen to you? The Dr. prescribed my dad 10mg of prednison and to take 4 once in the morning and once at night, is this how your taking them? Anyways im glad your close to your big procedure hopefully everything will turn out good for you. Im sure it will. Stay strong and if i remember correctly, you do have kids right??? Thats why stay strong and confident because they still need you. Take care of yourself Jeff. Thanks for the reply back. Tom

OK I have a long nightmare which began technically this September. I was hospialized for two weeks origninally diagnosed with double pneoumnia, wasnt reacting to the meds and eventually diagnosed with interestial lung disease, cause as of now still uncertain. Currently on oxygen, breathing treatments and a ton of meds and still undergoing tests. Biopsy was unconclusive as all of my tests have been. However, my lung capacity is still moderatly/sever impacted on a good day! Now am seeing the "expert specialist" university doctor. My question is my upper back hurts constantly, not my spine but directly behind what feels like my lungs. Is this common? Has anyone else experienced this? My doc has me scheduled for yet another test tomorrow, an MRI, hah, for the spine. Well, its three months as of y esterday and I am beginning to doubt I will ever be at the functioning level I was prior to the hospitallization. I am afraid this may be going to fibrosis, as well as the specilaist seems to think. My regular MD seems completely in the dark as to all of this and seems to think I am making up the pain in my upper back. It seems to be a hard decision to change my MD right in the middle of all this medical chaos. And at this point, I am unable to. So, I must find out my answers which I have searched the web for any connection to what I have experienced and any type of familiar "diagnosis" but am unable to discover one. If anyone can help or even direct me it would be greatly appreciated!
Debbie

Hey Debbie. Sorry to hear what your going through. I don't want to speculate on anything but my father does have enphasema and pulminary fibrosis and also did have a little case of pnuemonia. For him, it seems like when he started to take prednisone the pnuemonia went away. I asked the doctor for a flu and pneumonia shot, but at the time my dad was really sick so the doctor didnt want to. I guess the reason of many cases of people getting sick from the flu shot. But after the prednisone he's feeling alot better. My dad hasn't complained about his back though, so im not so sure about that but he has worked labor kind of jobs for many years so he does have back problems but he hasnt been compaining about them lately. Do you smoke? My father smoked for 40+ years and just recently quit. The doctor did say it's all because of the cigarettes. Also if your lungs are bad they say, you can tell by looking at your finger tips in which there usually enlarged just like my fathers. I don't really know much about PF so i cant say much, but I do hope it's not the case for you and its something little. Hope you feel better. Take cares and stay strong. Hope it kinds of help. Tom

Tom,

Thanks for your posting. I was wondering if anyone read the boards since most of the posts are dated. Yes, the docs put me on extremely high doses of steroids. Unfortunely, I have a severe case of what they call, "steroid psychosis". ITs a terrible side effect. However, when the pulmonary doc stopped the steroids in October the inflamation returned. The university specialists' now has me on inhaled steroids, which have helped. At least I can breathe now! :wave: However, doing any amount of physical activity leaves me completly exhausted. :bouncing: Upon entering the hospital the head docs of the pulmonary dept came to ask me if i had been out of the country etc bc they had no idea of what they were dealing with. Sadly, I dont think they know as of this date. Yes, I smoked, however, according to the docs cigarretes are not related they are pretty much grasping at straws and think I had a severe reaction to Bactrim (an anitbiotic) which attacked my lungs :nono: . I am glad you replied :D . I do not have the "clubbing" of my fingertips, although I hear this is a common reaction to certain types of pf. I am getting ready to head out the door to go do this test (mri) I think its a waste of time, and am still uncertain as to why my doc has ordered a test on my spine. Its funny in an ironic sense, how far medicine and technology has progressed, but how little the medical field actually knows about one of major body organs, the human lungs :angel: .

Hi Tom and Debbie,

Sorry I didn't reply before now, I've been in the hospital. I was doing the preliminary tests for the lung transplant when I got a staph infection at the heart cath. test site. Luckily it's not one of the antibiotic resistant strains of staph (scary!) but it's was bad enough to keep me in the hospital for a bit. I'm healing and feeling well.

Now - Tom I'm 45 until December :) I have 6 children 5 boys and one Daughter and one grandson (our Daughter's boy). My youngest son is almost 13 (Nov. 24th). So yes I have to be strong and get through this :) I will too! My Pulminologist sent me to the transplant clinic. Basicly you get a referral from your Dad's Doctor, and go see them. As far as I know the cutoff age is 65 so your Dad is safe. The tough part is that you can't have any other large organs with problems, including your skin. No cancers, or problems in your veins or arteries... The testing I just went through was to "look for any reason to not give you lungs" as my Doctor put it. :) She's a straight talker, and while that sounds blunt, it was said with a smile. I don't have the official results back, but talking with each of the testing folks - it looks like I passed well. So we'll see. My heart is in great shape and my pipes are clear, all of them :) The testing is very thurough ad from heat to toe litterally. I get tired exerting energy if I'm not on Oxygen or on too little. What they need to do for your Dad is a 6 minute walk test. What they do is start on room air and he walkes at his own pace - that he feels he can maintain for 6 minutes. He'll have a canula on for oxygen when he needs it and a nurst walking by him. Also he'll have an oxymeter on his finger that will let them monitor the O2 level in his blood. As the O2 drops they turn on a tank and turn the level up until he can contunue to walk and still have his O2 level above 90% For me this level is 6 liters per minute. If I am at that level I am able to peddle an exercize test bike (that is electronicly set to increase the difficulty over time) for 12.11 minutes I'm told that a 'normal' person averages between 8 and 12 minutes :) I just need the O2 to do that... Finding your Dad's O2 needs will let him get some much needed exercise. Prednizone has some pretty negative side effects, and some great positive ones. It can over time cause cateracts, diabeties, liver problems, etc. Higher doses increase those risks, but they are risks not givens. It also helps reduse inflamation in tissues - including lungs. I was at 60 MG a day in December and January and by February I felt great! It didn't do anything or well much for my lungs as I don't generally have much inflamation there. But I also have some arthritis from an old injury and had decreased energy from years of low O2, both of these dissapered and I started looking for things to do :) I also gained 30 lbs, and couldn't loose any until I got off the prednisone in August. :( Oh well. Hope that answers some questions - ask more if not :)

Debbie,
How did the MRI turn out? If they looked at your lungs as well as your spine it wasn't a waste :) Probably wasn't any way. For me they have worked through a ton of "possibilities" before they 'diagnosed' me with interstitial PF it's not uncommon for the I in IPF to be defined as idiopathic too. Idiopathic means unknown! Interstial is part of interstcium(sp?) which is the tissue layer between the alvioli (air sacks) and the capillaries (small blood vessiles) so a real translation is either "unknown scaring of the lungs" or "scaring of the dividing tissue in the lungs" and just means that my lungs scar too much when they get offended and this stiffens them making them not hold as much air as normal, and also thickening the tissue that the O2 and CO2 are suppose to pass through, making it har to get oxygen to my body and also hard to get carbondioxide out. When the CO2 levels rise in your blood it becomes acidic and is painful, becides not being good for you... This makes for pains and aches in odd places, and one place I hurt is in my back behind my lungs, but worse are my joints on my hands and feet... This does not mean you have IPF - I really hope you don't! It does mean that it's just another of the possibilities... I hope things are improving for you and for Tom's Dad! In case your wondering I'm fine, and looking forward to when it's right to get on the lung list and get the transplant, then I intend to get back in shape and go camping and hiking and even scubadiving again :)

Jeff

Hey Jeff, how are ya? Im sure glad your ok and thats good your feeling better I was ah little worried right there. Jeff, I dont know how you do it, you sound so energetic i wish i can give your confidence to my dad. My dad doesn't really know much about PF and today he tells me he's getting sicker and sicker every day and that 2 months ago he was able to go places withought the O2 but I tell him, yeah but couple weeks before the prednisone he felt like he needed to go to the E.R. and yesterday he was able to go to a few places and he said yeah thats true. Today he's not feeling so well. I just hope its one of those days were he's not feeling well today but will be ok the next day. I hope that's the case. Jeff did you feel this way also, where you had your up and downs on certain days??? And is it easier to breathe during the day than at night??? and will it be harder to breathe if the heater was on?? Sorry Jeff if it's kind of a silly question. I'm just clueless. Jeff and are you on O2 all day? Anways thanks for replying back. I know everything will turn out good for you and the transplant. I feel it. Take cares.

P.S Oh, and Jeff did i mention? You have looooooots of kids. haahaa.

Tom

LAUGH! :) Tom your all right!

Yup I had up and down days, and breathing is toughter first thing in the morning and evening. Lots of coughing both times, but then it settles down. The heater doesn't bother me - but the dust can... We had the vents cleaned and the filter changed and that made things better. Cleaners agrivate my lungs - anything with clorine (sp? clorox) in it I can feel in very small amounts, smoke, some air fresheners, etc. I can be at the other end of the house and tell something is burnig before someone standing at the stove notices it semms like... when the house is getting cleaned I preferr to be else where :)
Tom your Dad may be experiencing some depression, which is natural, and it would help him to see a Doctor and answer the questions very honestly. If he has depression it's a chemical imbalance and can be helped as I believe you know. With the meds he's taking and his condition it could be expected. I've been lucky in a way as my stuff snuck up on me over years. I've had mild clubbing of my fingers for about 15 years! Didn't know what it was or why, only that I was getting slower on hikes. Kept wondering why I was getting slow, (out of shape?) (old?) and didn't have answers. Now I do and "I'm on pretty good shape anyway, and have adjusted to low O2 some what. Yes I stay on O2 nearly all the time, I feel better with it and avoid enlarging my heart. I hope this answered your questions. Oh yup we have lots of kids, but there aren't any I'd send back ;) The oldest 3 are out of the house (2 married and one headed that way). We have an 18, 16 almost 17 (Dec), and a 13 year old at home - and the 18 year old is headed out after the school year... So it's getting smaller now - but fun during hollidays and such :)

Tell your Dad is a new adventure and learning opportunity :)
Hang in there,

Jeff

Have been reading your postings and just thought you might offer some advice as I am new here and dont see much on IPF. My dad who is 85 (not ready to put him out to pasture as doctors would probably like) has PF. He has oxygen in the house but his sats are usually 95%+ (I bought the meter for home use). My question is do you have any idea why he would use the oxygen if his sats are ok? He is SOB when he moves around of course but seems to breathe without much trouble sitting. Dont people become 'oxygen dependant'? Thanks for any help you can give. I hate to deprive him of his oxygen but it seems alittle on the psychological side too.
Linda from New York

Linda,

Sorry to hear about your Dad having PF. I adjust to better than 90% while sitting idle too, but if I talk much, move, etc. it goes down fast and recovery takes time. It's better to decrease the amount of oxygen when you're idle and increase it when you exercise rather than drop it completely. Dependance on the oxygen isn't an issue as much as learning to keep breathing deeply is. When you get sufficient o2 you tend to breathe less deeply as you don't require it. With o2 therapy it's easy to get use to breathing shallowly, and so the muscles get lazy. You don't get addicted to o2, well it's hard to live without any :) so I suppose we are all addicted to it. Sorry I have a twisted sense of humor. You need to be concerend about your Father not getting enough o2 rather than too much as it can cause an enlarging of the heart, leading to complications there. My perscription is for 2 liters at bed time, 6 liters when exercising (walking, etc) and as needed through the day. Most days I get around on 1 liter through the day, I try to move around a lot, but still sit quite abit. I figure it averages out. I'm still working too though. on thing you could try is to lower the o2 when your Father is up and sitting, and spot check him with the meter to see how he is. Talk to his Doctor and see what they say too!
I hope this helps, if not ask me again. Some times it takes a couple trys to get me thinking the way you are and then getting a clear answer from me... :)

Jeff