Re: Hi Cindi

[Guest guest]

Hi Cyndi, It is good to see a post from you. Glad to hear your Dad is stable. I know he is hating the stupid hose up the nose. we all do.. Be sure to give him a big hug and hello. has had a few crazy months with her kids home for the summer and family stuff but she is doing well as far as I know.. Kerry  ????? she fell into the world of the space monkeys I think.. lolThe last I heard she was at Joyce D's door with coffee and a cup cake ( I think) for Joyce's birth day.   How is your little family doing ? Prayers for you. Love and Prayers, Peggy  ipf Florida"Worry looks around, Sorry looks back, Faith looks up." Kathy,"Welcome" to this wonderful group...and just like everyone else says I'm sorry you have to be here...but the support you will receive here is amazing.Please don't listen to the expectancy of life your doctor told you.  My dad was devastated when he was told 1-3 years as well.  He was diagnosed in December of 2005, but had it a long time before that.  He was just misdiagnosed with Alzheimers, Adult ADHD, psychiatric problems...then finally PF.  What a joke the other diagnoses were.   He is on 2L of liquid oxygen.  He has been on O2 for a year and 2 months.  He is currently "stable".My grandmother also had PF, and although she was 72 when diagnosed as my dad was 58, she lived 71/2 years with PF.  The doctors told her 8 months would be her maximum.  So please don't listen to them about that.  Be strong and be as positive as you can.Joyce can attest to that.  She is wonderful and positive and has had this disease for 10+ years.  This group is full of fighters and you are just as strong.Hi everyone...I'm slowly catching up on posts.  What happened to Kerry and ?  Haven't seen anything from them lately.Your Chatanooga trip is almost here.  Sounds like so much fun!Have a great Labor Day.Cyndi (DAD PF 12.05)patrickkathleen <kapatrickaol> wrote:Thank you all so very much for your warm welcome and wods of help. I am very scared. Let me answer you questions forst. I just turned 59 in July. I will be going to the Shand's in Gainesville. I live down near Disney. I have not had a biopsy done though it has been mentioned. I am on oxygen 2L 24 hours a day on continuous.-but I am not on any other medicine yet. I have lost 40 pounds since last October when I was also dizgnosed with Diabetes 2, but again take no medicine for that only diet, but I am sure I will gain it all back if they put me on prednisone.One thing the doctor told us which really frightened us was that if I wanted to do any traveling I needed to do it within the next 12 months, because the life expectancy for this was 1 to three years.I see from reading that some exceed this, which is wonderful.............how accurate and real are this doctor's assumptiond...anybosy have a clue??\Take care, have an easyday today, and again thanks for being here for me and for everyone else.KathyPS. are there archives that I can access to learn more?-- In Breathe-Support , Peggy wrote:>> Hi Kathy, Which Shands do you go to? I go to Gainesville at UF.> As far as your numbers go, my Dr. always just says the diffusion rate > is the most important> number because it tells how much oxygen is getting into your blood > and your body.> This is how they determine the amount of O2 you use also. ( I am by > no means an expert on this> disease and PFT's) I have been on O2 for about two and a half years > now. I started at 2L, then went to 2 1/2, 24/7 now I am on 2 1/2 > sleeping 4 to 5L with activity.> > There are some on this board that can give you more details.> I do know one time I went for PFT's and was not feeling well and was > nor sitting tall. My test scores were all lower. The Dr. said the > tests all depend on how much WE put into it. Well I have been> blowing my brains out ever since.> > It is good that your DLOC # was better in 2007> > I have met with the transplant team but was told to call when I have > lost> weight. Thanks to Prednisone I gained a bunch and haven't lost nearly > what they want me to.> > God Bless you and stay in touch.> > Love and Prayers, Peggy ipf Florida> "Worry looks around, Sorry looks back, Faith looks up."> > > > > > My pulmonogist has diagnosed that I have pulmonary fibrosis and these> were the results from my latest tests.> > Here are my numbers> August 2006> Spirometry..post bronchodilator FVC 50% of predicted. FEV1 pf 57% of> predicted (1.80 and 1.52 respectively), ratio of 84%. Total lung> capacity of 4.13 liters. 78% of predicted and residual volume of 123%> at 2.44 liters. Diffusion rate 32% of predicted, adjusted for> hemoglobin. Flow volume showed a restrictive contour. Moderate to> severe restrictive defect with severe reduction in diffusion capacity.> > April 2007> PFt showed FVC 1.72 liters 52% of predicted, FEV1 of 1.11 liters 42%> OF predicted. TLC OF 3.12 LITERS,59% of predicted, RV of 1.40 or 70%> of predicted. Diffusion capacity 33%. Flow volume showed a> restrictive contour.> > CT of chest shows extensive fibrosis, predominantly peripherally as> well as the lower lobes with also some evidence of honeycombing in> the lower lobes bilaterally, Right heart does not appear to be> enlarged. There does not appear to be any lymphadenopathy.> > I was put on O2 24/7 at 2 liters.......in April of 2007. I just got> this report from a pulmonologist who we went to for a second opinion.> He has referred me to Shands to discuss transplant and my file is in> their office right now to see if I might be a candidate.> > Can someone please put it into English for me as to what this means.> I pop in here once in while and I am learning, but I know I learn> slowly and have quite a ways to go.> > Thanks,> Kathy>