Pulmonary Fibrosis Support Group

Open lung surgery for my S/O did not provide us with answers, just confirmed the inevitable. Sure took him a long recovery period although the reason may be contributed to by his heart condition and implanted defibs. I never opt for surgery, on anything.

A lung biopsy was also recommended by my doctor and pulmonary doctor. It was a hard go for me and a long recovery which made my family and friends fear my illness had progressed. Here a year and a half later I am better than I was then even tho I am on 4 ltrs of oxygen 24/7. The biopsy confirmed my condition and that there was nothing they could do. Even pregnizone doesn't work for me. I can't say I would or wouldn't advise any one on a biopsy but it isn't something I would want to do again. I was glad the diagnosis was correct but they pretty much knew that from the breathing tests and the fact that non of the asthma medicine worked and the MRI. So in the negative sense it seemed like a significant amount of discomfort for small results. It was dishearting to know that that amount of the time I have left was spent recoverning from a process that may not have been necessary

Ask your doctor about a VAT (Video assisted thoracosopy with biopsies. This is a less invassive measure for getting needed lung tissue for biospy. I had one preformed at Regions Hospital in St Paul. aweek ago Wed. The enire procedure takes only about an hour and then another hour in the recovery room. You are out (under anathesist)and I woke up feeling very comfortable in the recovery room.

I needed a biospyfrom my right lung so I was placed on my side and a 3 to 4 inch inscion was made under my arm pit. I think this was for the camera. Two other small insisions were made lower down for the forceps.They go in between the ribs for access. The lung was deflated for inspection and biospies 3 were taken then lung re- inflated after surgury. A small chest tube remained in one of the smaller incisions for drainage and air. That was removed 36 hours after surgery and a band aid was placed over the small wound areas and some sort of surgerical crazy glue was placed over the 3 inch incision.I had very little pain from the procedure. I spent 2 nights and 3 days in the hospital. I was home this last Friday exhaused from having a shared hospital room ( great roommate but alot of activity prevents any good sleep)I made it to sunday morning mass and out to breakfast afterward. Ask your doctor if he can get the info using this method. It was a peice of cake. Good luck and god bless

I also had a VAT as an out-patient. In at 8am and out of the hospital at noon. No problesms. Pulmonary Specialist confirmed I had no external invasions. He suspects a drug-related cause but will wait for continued inflammation or controlling the disease through prednisone. Thank goodness I think it has been controlled.

I am interested in hearing about the Chinese therapy you are taking. I am taking Serracor-NK which contains serrapeptase and nattokinase as the main ingredients. It also contains bromelain, papain, lipase, proteases, rutin, amia, coenzyme Q10, magnesium. Are any of these contained in your regimen?

Sawdusty

Thank you all for replying! I can't see how to reply to each of you separately, so I guess I just write to all of you here!

I REALLY appreciate all of your candid comments about the lung biopsy! I did find out that the surgeon is hoping to get enough tissue with the VAT, but may have to do the open lung biopsy. Thanks to Mikeyo and Sawdusty for showing it can not be too bad! Am wondering if either of you got a more specific diagnosis from the biopsy?

Thelethins, I'm so sorry you had such a rough time with it and it took so long for the discomfort to subside! Was your diagnosis Idiopathic Interstitial Lung? Since I just got the general DX of interstitial lung disease last week, I still have so much to learn....But I am so glad to hear that you feel better now than before the biopsy--and that the oxygen is working.

I'm wondering what everyone was told after their VAT or another type of biopsy, and how soon you were given a specific diagnosis?

Sawdusty--your regimen sounds very interesting, but none of those things sound familiar to me from my Traditional Chinese Herbs. Dr. Guo and Dr. June from Liferising (their office is in Chicago, but on the website you can find practitioners in most states) have me on a new regimen of 7 different herbs since I was diagnosed. They have names like Xi, BT-2, SHT (we've had some laughs with that one!), ZGC (for heart support), etc. They contain things like Licorice root, Ginger Rhizone, Asian Ginsent Root, Cinnamon Twig...maybe 8 or more things in each bottle. But you really need to find someone REALLY trained in TCM to "prescribe" the correct herbs in the right dosages and combinations. I also have been going for accupuncture every week. All this for a year to the DAY (exactly!) before my diagnosis of Interstitial LD.

It has changed my life--migraines (which were several a week and very severe--and from which the medicine made me sick) gone for about 8-9 months; sleep much improved; much less anxious and better mood; stomach pain/bloating gone; lost weight; bowels better; skin better; many other aches and pains gone or greatly diminished. Also, I have had chronic sore throats/sinue infections for years. My use of antibiotics is drastically reduced--now at the first sign of something I have an herb on hand for throat, stuffy nose, or "First Defense" when I feel something coming on. This has been terrific--especially when traveling, as it was warded off many infections (usually within 2 days the symptoms are gone--which is a miracle to me!)

Dr. Guo, Dr. June, and others on his staff have helped so many people with diseases like terminal cancer live much longer than expected--and have much better quality of life. My coughing was drastically reduced within a week of this regimin--although it comes back if I forget to take the herbs, and I still have the shortness of breath (but am hoping the herbs will help). Many oncologists from leading Chgo teaching hospitals now refer their terminal patients to Dr. Guo because of how much he helps them (and he never claims to "cure" cancer!). So if you are within the Chgo are or within a day's drive I encourage you to see him and/or Dr. June--she has been a godsend! She even called me at home Sunday night to see how I was doing, and gave me her cell number. By the way--I was a very hard cell on TCM--my daughter kept encouraging me to go for months. It wasn't until I was at the end of my rope with the migraines getting progressively worse and more debilitating--and the medications ruining my stomach that I finally went. And also because I saw how much Dr. Guo had helped my daughter with her lifelong stomach problems.

The downside is that my insurance doesn't cover any of it. But we decided a year ago that it was so worth it.

So thanks to all for your advice, and any more that you have about what your specific diagnoses and treatment protocols are.

Oh--and one more question: Do any of you have Hypogammaglobulanemia? I just found out I have that--does anyone know if that can cause ILD, or how it might effect treatment (e.g., steroids)? I know it means a compromised immune system--would that keep you off a transplant list? (This is something I know almost nothing about--but can't help but wonder...)

THANKS AGAIN! Am praying for all of you and thanking God for you being there to answer my questions when no one else can! Kauailover

I do have IPF and found out that they were pretty sure before the biopsy but thought the biopsy was necessary to see what treatment would be effective. Found out probably a week later that it was indeed IPF and that there was no treatment other than oxygen. They had tried pregnasone in the hospital and it does nothing. I am oxygen therapy and keep the rest of me as healthy as possible. Do not frequent places where germs may be easily accessible and have to keep people with colds etc from the house. Other than that and low energy and limited exertion at one time things are fine. Some pain but manageable. I have made adjustment to how I do things and how I do things with a little help so am still pretty independent. Just have to make decisions on what is priority and what isn't/ No different than anyone else my age that has a physical ailment of some sort or the other.

I'm sorry I made it sound so gruesome but maybe I'm a whimp. But to get a large enough piece they did open surgery and even then didn't get a sample from the lower lobe. My lungs are not in too good of shape so they just stopped. Doc says it takes loosey lungs longer to heal. They deflate on side and it didn't respond well to reinflation. Who knows. Maybe yours will be like a piece of cake. It is different for everyone.

I has been a relief for me to finally know what is wrong and why I have felt crappy for so long. It seems this has been going on for some time and went undiagnoised. So I am grateful actually.

From a personal but non-professional standpoint, I would NOT do an open-lung biopsy. They are very hard to recover from, and the people that I have known who had them have not recovered. Further, it didn't seem to make any difference because what the doctors discovered (PF), they didn't have answers for anyway.