I have recently been diagnosed with PF and PH. I am currently on 10 mlg of prednisone(could not tolerate more)...I am told that this medication really only helps the cough in PF. I have diabetes and prednisone is really messing up my blood sugars. It seems like a catch 22.
My Ph was caused by not being put on a CPap machine soon enough because I didn't qualify because I was like a few points below the qualifications for getting the machine. However, my great pulmonogist reordered a sleep test and I certainly qualified then. It has been a great help...also now I have oxygen that does directly into my machine for nights. It has worked wonders for me. I don't have the have much oxygen during the day. I have only been on oxygen a couple of weeks. I cannot walk any distance or do any exertion or I become completely breathless in fact, my oxygen level drops dangerously low.
I take Trecleer for the pulmonary hypertension. I've had to go back to a lower dose because my liver enzymes went up. I also am on two inhalers.
I was retaining alot of fluid and was on lasic for a week. That has helped.
I have felt really good for 4 days this week. For weeks I felt pretty bad until my doctor made these changes.
Now, what I would like to know ...I would like to hear from some of you who are living with PF. I keep reading exercise helps.. Right now I couldn't exercise if I had, too!
I need any information and advice you can give me. I am a 67 year old female
who is a moderate smoker. I havn't quit because research has shown that a person who smokes and has PF the disease speeds up if you quit smoking. They don't know why but that has been one bit of information that has come as a by product of the reseach out there.
I would really appreciate a response from anyone living with PF. I need someone to talk with.
Last edited by Bettie; 08-05-2004 at 07:15 PM.
Reason: request people respond
I cant offer you much advice on the smoking. I know exercise can be hard. Here we have started Pilates and we take a wheelchair with us when we go out. I encourage Larry to do what he can and leave the rest to me and the chair. I have never heard of PF being caused by not having CPAP and would love to hear more about it if you dont mind. We are currently doing the pilates, Pulmonary rehab, and whateverelse he feels up followed by alot of rescue breathing techniques. Using oxygen and CPAP. prednisone @ 20 mg, combivent 4 x day, advair 2 x day, oscal, multi vitamin, aspirin @ 325 mg, actonel 1 x week, claritin. and some herbals and aroma therapy, and reflex massage.
The pulmonary fibrosis was not caused by not having a CPAP ...to my knowledge they don't know what causes PF.
If I had been on a CPAP machine earlier I could probably avoided PULMONARY HYPERTENSION. I did the sleep test 5 years ago and did not qualify by a few points so insurance would not approve the machine. I had the test redone
2 months ago and far exceeded the numbers with the number of times I stopped breathing...and now I have a CPap machine. Of course, it is not a proven fact but there is the possiblity I would not have develped PULMONARY HYPERTENSION if I had been on it earlier. That is all in the past so I'm just thankful to have the machine and oxygen has been added to it. It has worked wonders. I take Tracleer for the HYPERTENSION.
This week my doctor recommended I go on Gamma Interferon for the Pulmonary Fibrosis. I am willing to try even though the side effects don't sound too good. I have an excellent pulmonologist who is a specialist in IPF.
So far she has been right on the money in treating my disease. However, I thing there is only so much any of them can do to retard the progression of the disease. We just keep on trying and hope for the best.
Thank you for responding to my post.
Have a great day!
PS Have you heard of a health food supplement for lungs called Respiratone?
I just bought some to try. It is suppose to help with mucous and aids in breathing.
I have not heard of that supplement. Larry started Bromelain 1000 mg a day. In the book 'The Healing Power of Herbs' by Michael T. Murray, N.D. it says that it has an antiinflammatory, antibiotic, anticancer activty. As well as an antitussive efect, reduces the viscosity of sputum. patients have shown increased lung capacity and function. We said it cant hurt anything so he has been taking for about a month. It appears to have helped alot. There is a good site with Herbal stuff relating to IPF. http://www.health-reports.com/pulmonary-fibrosis.html there is also another that we have been looking at naturleaf. I dont know if herbals work but I like them for myself. I also like aromatherapy they say that frankencense and/or chamomile help with lungs.
Hi Bettie, My name is Dyane and I have been living with PF for 6 years. I just finished all the tests and Im sure the diagnosis will come back for PH too. My mother died of PF in 1996 after 5 short years but she had a very fast progression. I smoked for 35 years but had quite 5 years before my first outbreak. I was hospitalized for 35 days, spent 7 days in ICU on a respirator and was given a 50/50 shot of surviving. They called it ideopathic interstitial pneumonitis. I was on prednisone for 6 months, gained 100 pounds and then taken off. For three years my o2 sats were 90-95 percent even though I had multiple areas of scarring in my lungs. I asked for and got a sleep test when I started falling asleep on the drive to work. I had 92 episodes in 60 minutes and have severe sleep apnea. Thank god for CPAP! Have been on o2 at night since then but still did not use during the day. In December my husband had health problems and I went out and bought a Pulse Oxymeter. I discovered my sats were falling into the 70's when I was working hard around the house and even while grocery shopping. Needless to say I've been on o2 24/7 since then. I can feel I am slipping though, it gets harder and harder to walk and of course with the o2 and my weight, walking is the only excercise I can do. Of course my insurance wont pay for a lapband procedure even though it would extend my life considerably if I lost weight. I just went through the testing for ph, get the results on wednesday but with my history its a slam dunk. Hr up to 165 or more when I do things like make the bed. Im hoping the drugs to treat ph will help cuz right now Im ready for the electric scooter. Prednisone is very bad for us diabetics, but the docs know its the drug, just keep trying to get those sugars down. I know its alot but you have to just keep plugging along. I have a pity party every so often but then I just get back up. I firmly believe that attitude is a big deal. Also be pro-active when it comes to your health. Keep up with the lates news, the internet is really great for that. Your 67 and that is great, I hope to make it that long but I may not. Im sure gonna give it a try. Im 52, am diabetic and have beaten breast cancer x 6 years so far. I dont give in easy.