I was referred to this site by Melody from Montreal. She had a lung transplant over a year ago. She found this site to be really helpful to her and she recommended that I join your group. I am a 72 year old (non smoker) male that was diagnosed last June with IPF. I recently had my second cat scan and it showed that my disease has progressed. Over the past 7 months, i lost over 60lbs and have just gone through a very low time physically and emotionally. Since I am 72 and had a stent placed in my right ventrical, I am no longer a candiate for a lung transplant. Therefore i have no other option but to learn to live with this disease. I have been on prednisone for the past couple of weeks, along with NAC and an antibiotic and I am now beginning to feel a little stronger as well as breathing a bit easier. I'm looking forward to learning as much as i can from your site.
Post by Blossom/Jackie W. on Feb 16, 2009 18:22:11 GMT -5
Woody...First off.... WELCOME!
Our/my thanks to Melody! She's been doing pretty darn good since her TX don't you think?
I probably should spend a few minutes learning a bit more about IPF before responding so please forgive me my ignorance......and; if the truth be told; I know what it is, but, that's about it and I guess the "Ideopathic" says it all.
Though we share many similar problems; why a COPD forum?
We do have folks here that have had stents; and Heaven knows we have breathing problems so in you're in good company!
You've lost a lot of weight my dear.....pour quoi?
Prednisone? How did you find it in that .... Did it help you at all? Why were you on the anti may I ask?
I hope you won't mind sharing....after all that's how we all learn; by sharing that is.....
My name is Jackie; aka Blossom.........AND
you're welcone here Woody..... we can all learn and share together...
hi Blossom The 'Ideopathic' in IPF just means that they really don't know the cause of the Pulmonary Fibrosis. I was diagnosed last June after visiting a 5 star ranch in kamploops BC (at 3600 feet) - i couldn't catch my breath in the higher elevation, collapsed and was rushed to the nearest hospital. After taking a battery of tests, they came up with the IPF diagnosis. I immediately returned home to Ontario and saw my doctor and a pulmonologist who reconfirmed the diagnosis with a further cat scan. I also visited a nutritionist who put me on a very restrictive diet (sugar free, glueten free, dairy free etc.) and had me take numerous supplements (about 60 pills a day). In January, at my lowest point yet in this illness, i went back to my pulmonologist who reviewed my current cat scan with my scan taken last July. He said that my disease had progress. After much thought, I decided to go completely off of the nutritionists protocol, increase my daily caloric intake and try the prednisone (along with the antibiotic med the doctor recommended) for 6 weeks. Currently I am in my second week of taking the prednisone. I am finding that going back to my regular diet and taking the prednisone has given me more energy and eased my breathing.
Hi so glad you could join us here at Copd in Canada ( philns.proboards46.com/index.cgi) our interactive forum, we have a great group here, made up of people Living with Copd, Carefgivers, Family Members etc., If you have any questions or concerns we will certainly try and find the answers for you. Please feel comfortable to join in anytime.
COPD CANADA Patient Network ( www.copdcanada.ca ) is our Parent Website, A Federally incorporated, registered Charitable Organization, made up of, and run by, Canadians "living with" COPD,filled with Great Information, our free sign up is located here ( www.copdcanada.ca/sign_up.htm )
My name is CoCojax (aka Ellen) Welcome To Our Group!
Post by Blossom/Jackie W. on Feb 17, 2009 19:38:32 GMT -5
Hey Woody... I know that the "I" stands for Ideopathic (unknown origin) in Pulmonary Fibrosis........ but; would you mind if I asked a few question. (Sorry; I've much to learn) ...
I gather you're not on oxygen; nor near the need for same and obviously this came/hit you suddenly (the realization there was a problem) from the altitude as you say.......
You have one stent.... granted you're a tad bit older than the norn for TX's BUT; that age differential has changed and continues to change.....folks in their 70's are not necessarily excluded from....
Again, please forgive my ignorance ....but; have you been told you wouldn't qualify for a TX?
sorry for getting back to you so late. In response to your note, I did have an annoying cough for approx. 5-6 years prior to diagnosis. I also had a very bad case of pneumonia about 10 years ago. I am on oxygen (level 3) during the night. I still have a lot of trouble with sleeping, even with the oxygen. I was told that I wouldn't be a candidate for transplant because of my age 72 and heart condition. I was trying to arrange for a meeting with the head of the transplant team,but since then I have read some promising information about adult stem cell research...and if i had a choice, i think that i would rather take this route. Theyv'e completed phases 1-3, and it's being fast tracked with the FDA. They should have an answer in 12 - 18 months.
Post by Blossom/Jackie W. on Feb 27, 2009 7:38:13 GMT -5
I must apologize myself Woody; I took the week off.
Most definitely the heart issue is a problem; probably more so than your age. BUT; you're right. Things are looking more promising all the time when it comes to Stem Cells and I know that there's a number of folks here that would gladly test it out. You're in good company in that regard.