also GailSK, I forgot to add that it is about 4-5 days in the hospital after your lung biopsy. I did have the complication of a blood clot in my arm where they had me hooked up so that made my stay a little longer.

Thanks so much for the thorough report. I am very worried about the biopsy, not to mention the 5 days in the hospital! I will find out in Dec. if I have to go that route. My Pulmonologist said there are several forms of lung disease that can appear in a Sjogren's patient and that she wouldn't want to start treatment until she knew what to treat. She has referred to my irregular CT as scarring from inflamation but the two CT's I've had have shown no change. I can't tell that I'm any worse than I was the last time. I can walk at least 3 miles, I know, if they are flat miles! Walking up inclines is difficult, especially at high altitudes. This summer I spent 2 weeks in Provence in one of those villages built on a mountain, and it was hard to keep up with my friends on those steep paths and stairways. Then my husband and I went to Banff where we were in the mountains. I couldn't hike up any inclined surfaces up there. Sad.

Thanks again for the information. It will be helpful when the time comes.

I hope you won't have to do the biopsy. My doctor was the same way though, she didn't want to treat me until she really knew what I had and I admire that approach. I seem to have a mix of a lot of things but they did find out for sure some things I didn't have which was reassuring. They also saw the inflamation on the biopsy that they couldn't see on the CT scan. So you will come out of it with more knowledge than you have before you go in. But whether they will be able to successfully treat you once they see what you have is another question entirely. I have found it to be trial and error and that some people respond and others don't. It did give me a piece of mind to do it. But remember, as my hopkins doctor told me, you don't come out of the operation better as it doesn't fix anything. It is just for diagnosing. And some people come out of the operation long term worse than others. I cannot really complain, but I know others with very bad chronic pain (nerves can be hit when they go inbetween the ribs to get the biopsies from you lung), and some who now are on O2 at night since their operation and they never have been able to get past these side effects. So keep that in mind when you decide whether to do it. I think I really had to do it for a piece of mind as my scores were getting worse and I didn't want the doctors just putting together just any treatment plan without knowing what they were doing. So we were all happy I did it. My husband is frustrated though that so far they haven't been able to stop the progression so he has been discouraged with it all.

Thanks so much for the input. I, too, hope I won't have to do it, at least soon. As I just mentioned, last week I had a dental implant, and I'm still feeling bad from that. I got an infection, then antibiotics, and my Sjogren's symptoms are going haywire! I would hate to go into a lung biopsy feeling okay and come out as an invalid for life. Every day I think I trust doctors and all things medical less and less and am more reluctant to launch into any type of invasive treatments. Ah, well. We'll see what happens!

Again, thanks for your input.

It is all very scary I know. I hope you get feeling better from you dental implant. That sounds miserable and scary as well.

Hi I just joined up I came to ds because i have endstage IPF which is part of InterstitialLung Disease. I have lots of questions

I have had 4 lung biopsies so far they hurt and for me it lasted along time but i have had and will have worse things and i believe you probably have too. It gets a little better every few days and eventually it is gone. My biopsies showed nothing but cysts called honeycomb lungs nothing but a miracle can change that. I believe and have experienced miracles so it could although i have a feeling this time it will have to be hard way. I had a terrible time getting diagnosed with any of this and at this point my ssb test was 599 has anyone else been diagnosed with ss based on that. My dlco is 39 i am going for transplant eval. I have been bedridden along time for the most part i can get up and i go to rehab twice weekly to walk tread mill. I have needed to talk to people with similar problems. Have any of you had multiple back or neck surgeries and or carpal tunnel.

Hey tj,
my dlco is around 50 now. It was around 73 about 2 1/2 years ago, so I know how scary it is to have a low dlco and one that is heading down. That is my only score right now that is really bad for me, but my others are coming down slowly. I think honeycomb is different from cysts. My cysts are different sizes and dispersed all around my lungs though I do still have patches of healthly lung too. I think in honeycomb, the holes are more in a pattern and together. Are you going to some really good pulmonary doctors?

tj,
also, you might check the copd and emphasema blog on this site. As I am known to say, misery loves company. You will find some people on that site that are just trying to get through day to day. You might also see some suggestions too that might help you. Just a thought. I have even gone over there to see what people are dealing with over there and it was helpful for my state of mind. I also have been taking an anti-anxiety med that helps me tremendously in dealing with my situation and not get anxious about it. It was prescibed for menopause to control hot flashes, but it also helps control anxiety. And I see a big difference in my axciety when I go off it. anyhow, something to think about.

Thank you for replying. I am going to Cleveland Clinic for my transplant process after being turned down by IU and Chicago for too many ci morbidities caused by autoimmune disease. I am on the IPF support group. I am actually normally in a pretty good place about the whole thing normally but my husband is PTSD from war and this very long process has been very hard on him my son has been listed as having severe life threatening asthma after seeing two critical care pulmonologists although he is recieving very expensive very new biogenetically engineered treatment that shows sign of helping. Right be for I was found in a coma almost dead by my husband we found out that the woman who did his books and most other things too do with our finances had been embessling for a few years had gotten greedy. I was too sick for too long to thoroughly check anything when the economy hit us we were negative in all our accounts taxes were not paid and we had lost all our insurances with no way to recover. We have plodded through for the last few years our home is in foreclosure food has been an issue he still does what he did which eas work on trucks machinery and restore special cars but instead of having 8 people to help he has 2. He hurts all over he is on meds but watching a loved one die is harder than doing it yourself. Watching my son struggle for breath while trying to get his machine going has been hard on both of us, he has had the odd infections like I did as a child and his joints started clicking and grinding at 12 and I am scared to death he will end like me there are many more pleasant ways to go. Ok got some of it out of my system I have not finished spewing yet which is why I came to ds I am getting better but I am honest with my family as best I can be I hold back things because its all too much for a teenager and ptsd man who was already just doing his best. The point of the very expensive treatment is to keep the scarring in his lungs from progressing to the point of no return like mine have. The doctors say ipf is scarring gone wrong your lungs become stiff as they shrivel and the scarring becomes cysts that form in a honeycomb pattern when looked at on biopsy at the end. Which is what all of mine looked like. Thank you for opening this up for my screams I cant do here. I feel better just writing it where it cant be seen isnt good enough. I feel so guilty for passing something through genetic predisposition to my son and leaving them to deal with no way to bury me, no home, no business for my husband to work with his issues trying to work for someone after 20 would be bad and piles of paperwork to do and bills to pay the medical i used to pay is now sitting with no way to pay payments did not do it for one clinic where all our local doctors are and we have lost them all incliding my sons dont know what to me do. Thank you if u if you have read this rant I really do feel better and lord willing We will be ok cause this to shall pass.

Holly I had looked at all the discussions here and on the pulmonary fibrosis site before deciding to join. You have consistently gave good advise and an upbeat attitude I thought the worst of how i felt this last weak was gone I had let some out here and there. I guess I was wrong you gave solid advice but I do know they call Ipf ideopathic because they are not positive of the cause but they all agree that it is most of the time related to an autoimmune issue. Sorry again.

Hey tj,
Gosh. SOrry you are suffering in so many ways. Have you looked at the nih website to see if you might qualify for one of their trial programs for people with ipf? They may have some and then they take care of the cost of testing and monitoring you. Also, if not for you then perhaps for your son. Also, not trying to be political here, but you might look into obamacare for your son. I know my brother said obamacare has helped his family tremendously with medical expenses. I don't know much about it but there may be something there so you can at the least get your son some help.

The cleveland clinic is supposed to be very good. I hope they will take you. That is my same worry which you are having now. That because of my sjogrens, when and if I have to start looking into transplant, will they turn me down because of sjogrens. So we shall see.

Also under obama, there are some other programs to help people keep their houses. I know we re-finanaced under one of his programs so that our mortgage would have less interest. You might look into that if it is not too late.

I am so sorry about your situation. How long have your lungs been going down hill? Did you try all the therapies out there?

Thank you Holly for all of your suggestions and sorry I unloaded but did need it. I had no idea I had this over the years starting at age 9 I had so many problems and hospitalizations that nobody went looking for anything new if fact if I asked about any symptom off topic I was considered a hypochondriac. My mom and I ended up at the same doctor he thought we both were but eventually they found my problem I confronted this rhuemy about his attitude since i would not be seeing him again I needed a surgeon he said just because we found you to have a problem does not mean your mother does. A few months later when she was so bad it could not ne ignored by even an idiot they found she had nonhodgkins lymphoma very advanced. That was how my life went when something would be obvious like pneumonia i would be treated but after ovet 40 stays and 30 surgeries i gave up trying when i got prednisone for something from a surgeon who suspected autoimmune but could not figure out what. I felt so much better after a few weeks i could not believe it everytime the taper went below 10 i started being very sick again i had went from size 10 to a baggy 2 in 8 months befote pred.. Anyway i never went off. But maint doses dont work forever. After pneumonia sepsis put me in a coma on respirator for a while and i kept going back showing pneumonia they asked to do a biopsy. Sorry my story is complicated. I also was told i had asthma as a child. They think i'v had this since childhood but with heart attacks added to the mix and the majority of doctors quoting the hypochondriac phrase i was endstage with no real optiins. Also sjogrens and autoimmune are commonly seen at the transplant centers since it is a main cause of this so unless you have another very involved organ system like kidneys my heart is border line at cleveland i believe i will get it there. Thanks for answering.

There are three centers that will probably do this with my particular comorbities mainly the heart issue I also had a test at the first center that for whatever reason was incorrectly read had i not had to call for additional info i would never had known cleveland redid the test and added some found that i did not have this esiphageal issue that would have stopped any chance of transplant and even after finding out I did not have akalasia the original that they said was incorrectly read is still coming up. But any way it is easy to find out who specialises in what. You are getting to a point where you will want to look as you know but many of my numbers are low with the coma I started this in a bad place and am weaker than i should be with all the stress i have had some severe exasperations. I quit driving a while back except for special things but that was my thoughts about the safety of others i believe i can still know when i am safe but remember i laid here to the point of coma twice. I know my judgement is suspect. You sound like you are doing amazing amounts so you could be good a long time. My dlco of 50 came and went without me knowing I had this. But I had other things to blame.

tj,
Thanks for sharing so much. Please keep us up on what is going on and how you are doing. You do have a lot going on, but it does sound like you have some good chances for transplant. I have a doctor friend that has 2 transplanted lungs, so I certainly have seen survivors from these transplants. I don't know what my future holds. We just keep plugging along to see if anything works. It is nice to hear what others have done because that gives me idea's. I think that is why we all are here.