Re: a newbie

[Guest guest]

Welcome Vicky , my name is Benita. Just try to get plenty of rest and take your time at doing things. I was diagnosis with IPF and have Lupus in 2002 of June and with threw a lot. Some days are very hard for me, but I have a lot of support and you should think about building a support with a friend that you can always talk to. I will keep all of you in my prayers.vicky81856 wrote: Hi everyone,My name is Vicky and I was diagonised with IPF in April of this year (2006). After becomming short of breathe in FEb, I finally went to my drs. I've had about 11 x rays, a bronchscopy and finally a open lung biopsy done with 3weeks ago. They finally figured out what was wrong after guessing at Farmers Lung, Congestive Heart Failure and fungus. I dont know a lot

about this disease, I know I'm on oxygen 24/7...3 liters. My dr has an apt set up for me with a arthritis dr. I'm so worried about my husband, we're been married 30 yrs and I dont know how he will function alone. I am 49, my dr said about 2 yrs. Whta does it mean by stages and how would I figure out what stage I'm in? Thank you all for listening to me, I've been really down and needed some friends who understood..Vicky IFP 4/06

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[Guest guest]

Hi Vicky Sorry you had to come to us, but glad you are here. My list of things. 1. When it's time, it's time Do not let the dr tell you your time is up. God in his mercy will give you the full amount of time you should have. 2. Our spouses are probably a lot stronger mentally than we give them credit for. My husband keeps telling me he will die before me. 3.Stages means the progression of the scarring, Not the amount of time left. 4. YOU ARE WITH FRIENDS YOU CAN TALK TO. 5. Faith CAN work miracles. May God Keep You In The Palm Of His Hands ipf 7/05vicky81856 wrote: Hi everyone,My name is Vicky and I was diagonised with IPF in April of this year (2006). After

becomming short of breathe in FEb, I finally went to my drs. I've had about 11 x rays, a bronchscopy and finally a open lung biopsy done with 3weeks ago. They finally figured out what was wrong after guessing at Farmers Lung, Congestive Heart Failure and fungus. I dont know a lot about this disease, I know I'm on oxygen 24/7...3 liters. My dr has an apt set up for me with a arthritis dr. I'm so worried about my husband, we're been married 30 yrs and I dont know how he will function alone. I am 49, my dr said about 2 yrs. Whta does it mean by stages and how would I figure out what stage I'm in? Thank you all for listening to me, I've been really down and needed some friends who understood..Vicky IFP 4/06

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[Guest guest]

Hi Newbie Vicky!

So glad to have you on board, but sorry that you are so sick. Don't get depressed about numbers. Docs told me 2-4 yrs. in 1997. God has decided to keep me around.

I was diagnosed when I was not much older than you are now. I was diagnosed with PF secondary to Lupus. I have had Lupus since I was 33. I had many complications over the years, the lungs of course is the worst. The docs decided to get real aggressive with the Lupus and that stalled the fibrosis somewhat. I am now in end stage. Stages are not necessarily indicitive of how much time you have left. It is measured by the PFT results and by the advancement of the fibrosis. When the CT showed honeycombing, that is when they began calling it end stage.

I am hoping that if they want you to see a rheumatologist that they believe your fibrosis may be secondary to Rheumatoid Arthritis or another autoimmune disease. If so, then that disease can be treated and it may keep your fibrosis from advancing so quickly.

I know and others here know the despair that you feel. You are in the prime of your life with your sweet husband. These years were supposed to be the easy and carefree years. Don't expect too much from people in the way of support. Even when they really try, they cannot identify. That is why we are here. We rant, we cry, we laugh, we rejoice and we pray for each other. We understand! We get it!!!

Stay around so that you can help us and we will be here for you.

Hugs,

Joyce

PF 1997>> Hi everyone,> > My name is Vicky and I was diagonised with IPF in April of this year > (2006). After becomming short of breathe in FEb, I finally went to my > drs. I've had about 11 x rays, a bronchscopy and finally a open lung > biopsy done with 3weeks ago. They finally figured out what was wrong > after guessing at Farmers Lung, Congestive Heart Failure and fungus. I > dont know a lot about this disease, I know I'm on oxygen 24/7...3 > liters. My dr has an apt set up for me with a arthritis dr. I'm so > worried about my husband, we're been married 30 yrs and I dont know how > he will function alone. I am 49, my dr said about 2 yrs. Whta does it > mean by stages and how would I figure out what stage I'm in? Thank you > all for listening to me, I've been really down and needed some friends > who understood..> > Vicky IFP 4/06>

[Guest guest]

Hi Sher and thank you so m uch for your email. It does help to know others care and can understand what we're going thru. God bless you,,,

Vicky IPF 4/06

••••••••••••• Original Message •••••••••••••

Vicky...welcome to a wonderful group. I've been here about a week and feel like I know most of these wonderful people! In just a few days I felt my humor return and it's so good to really feel at home. I was dx May '06. Had some suspicious x-rays and Cscans...then confirmed the 6th of this month. I begin physical therapy next week...no 02 yet. I'm trying to walk everyday. When I don't it's cause I'm lazy and don't want to but I must keep it up. I've been doing a half-mile. Actually it amounts to many blocks but I feel good about myself to do it.

I don't know much about this disease either. I've learned so much from this board and I also attend a support at our local hospital for PF.

I've tucked you in to my prayers also. Sher ipf 5-06

a newbie

Hi everyone,My name is Vicky and I was diagonised with IPF in April of this year (2006). After becomming short of breathe in FEb, I finally went to my drs. I've had about 11 x rays, a bronchscopy and finally a open lung biopsy done with 3weeks ago. They finally figured out what was wrong after guessing at Farmers Lung, Congestive Heart Failure and fungus. I dont know a lot about this disease, I know I'm on oxygen 24/7...3 liters. My dr has an apt set up for me with a arthritis dr. I'm so worried about my husband, we're been married 30 yrs and I dont know how he will function alone. I am 49, my dr said about 2 yrs. Whta does it mean by stages and how would I figure out what stage I'm in? Thank you all for listening to me, I've been really down and needed some friends who understood..Vicky IFP 4/06

[Guest guest]

Vicky...welcome to a wonderful group. I've been here about a week and feel like I know most of these wonderful people! In just a few days I felt my humor return and it's so good to really feel at home. I was dx May '06. Had some suspicious x-rays and Cscans...then confirmed the 6th of this month. I begin physical therapy next week...no 02 yet. I'm trying to walk everyday. When I don't it's cause I'm lazy and don't want to but I must keep it up. I've been doing a half-mile. Actually it amounts to many blocks but I feel good about myself to do it.

I don't know much about this disease either. I've learned so much from this board and I also attend a support at our local hospital for PF.

I've tucked you in to my prayers also. Sher ipf 5-06

a newbie

Hi everyone,My name is Vicky and I was diagonised with IPF in April of this year (2006). After becomming short of breathe in FEb, I finally went to my drs. I've had about 11 x rays, a bronchscopy and finally a open lung biopsy done with 3weeks ago. They finally figured out what was wrong after guessing at Farmers Lung, Congestive Heart Failure and fungus. I dont know a lot about this disease, I know I'm on oxygen 24/7...3 liters. My dr has an apt set up for me with a arthritis dr. I'm so worried about my husband, we're been married 30 yrs and I dont know how he will function alone. I am 49, my dr said about 2 yrs. Whta does it mean by stages and how would I figure out what stage I'm in? Thank you all for listening to me, I've been really down and needed some friends who understood..Vicky IFP 4/06

[Guest guest]

thank you Grey for your reply, it means a lot to me, especially today. For some reason this is a very "down" day for me, I know its only been about a month since I found out what I have,but I dont think a day has went by that I havent cried. I cry for my kids, my husband, myself. I wonder why this horrible disease picked me. I know I sound selfish but I'm just so lost right now. My husband says I'm giving up and sometimes I think I am, but then, theyres that flicker of hope. My daughters wedding is in August, moved up from next yr just in case "mom" isnt here. I used to be a smoker, I quit when I had my lung biopsy then got so discouraged and smoked a few today. My daughter got mad at me but I feel like I'm gonna explode inside, sweet Jesus please help me. Thanks for letting me vent, I love ya'll and really appreciate the support.

Vicky IPF 4/06

[Guest guest]

Hello Vicky, I was diagnosed in oct 05 after broncoscope and numerous scans and xrays. The doctors are guessing about the treatment we receive. They don't have anything to offer me other than pregasone so far. Read some of the past posts. Some have lived a good long while and others have died in about 2 years. I think it may have something to do with what kind of lung disease we have. there are a lot of different kinds and I think they pick one that ins will cover. I'm being honest with you. They are guessing. I think it depends on how bad our lungs are filled with fibrosis. that is not an encouraging answer, but an honest one. I am guessing too. I hope we have a long time to go. I'm sorry you are so sick at such a young age. This is a good caring group and will answer your questions if they can. We are all looking for answers. Grey

a newbie

Hi everyone,My name is Vicky and I was diagonised with IPF in April of this year (2006). After becomming short of breathe in FEb, I finally went to my drs. I've had about 11 x rays, a bronchscopy and finally a open lung biopsy done with 3weeks ago. They finally figured out what was wrong after guessing at Farmers Lung, Congestive Heart Failure and fungus. I dont know a lot about this disease, I know I'm on oxygen 24/7...3 liters. My dr has an apt set up for me with a arthritis dr. I'm so worried about my husband, we're been married 30 yrs and I dont know how he will function alone. I am 49, my dr said about 2 yrs. Whta does it mean by stages and how would I figure out what stage I'm in? Thank you all for listening to me, I've been really down and needed some friends who understood..Vicky IFP 4/06

[Guest guest]

Oh Vicky honey, I hate the thought of you grieving like this. I have been there and go there often, even though I keep a brave face. Hang on to that flicker of hope. If it is the only light you can see...a flicker can roar into a roaring fire of hope and strength that can see you through. Remember that we all are in the same boat and we are rowing as hard as we can....backwards.

Stay around and maybe some of us crazies can cheer you up.

God loves you, Vicky

Joyce PF 1997>> thank you Grey for your reply, it means a lot to me, especially today. For > some reason this is a very "down" day for me, I know its only been about a > month since I found out what I have,but I dont think a day has went by that I > havent cried. I cry for my kids, my husband, myself. I wonder why this > horrible disease picked me. I know I sound selfish but I'm just so lost right now. > My husband says I'm giving up and sometimes I think I am, but then, theyres > that flicker of hope. My daughters wedding is in August, moved up from next yr > just in case "mom" isnt here. I used to be a smoker, I quit when I had my > lung biopsy then got so discouraged and smoked a few today. My daughter got mad > at me but I feel like I'm gonna explode inside, sweet Jesus please help me. > Thanks for letting me vent, I love ya'll and really appreciate the support.> > Vicky IPF 4/06>

[Guest guest]

Vicky, I think we all have "down days" where we just can't get beyond the depression. I know I lose it when I start to focus on what I am afraid I will never see-my daughter's wedding, future grandchildren, etc. I think it takes so much energy to focus on positives, but making a list and then rereading them when I am down seems to help. Or having "emergancy medical treatments"-mine are massage, pedicures and pie! One day I ate an entire strawberry pie. I don't recommend this on a daily basis BUT trust me I felt a whole lot better and a whole lot happier when I finished. Maybe your treatments will be funny movies or visits to a lake or pond. Be creative, we need to make these out best years and not just memories of medical treatments. I will be praying that God brings back peace into your life and joy-Ladyvic1@... wrote: thank you Grey for your reply, it means a lot to me, especially today. For some reason this is a very "down" day for me, I know its only been about a month since I found out what I have,but I dont think a day has went by that I havent cried. I cry for my kids, my husband, myself. I wonder why this horrible disease picked me. I know I sound selfish but I'm just so lost right now. My husband says I'm giving up and sometimes I think I am, but then, theyres that flicker of hope. My daughters wedding is in August, moved up from next yr just in case "mom" isnt here. I used to be a smoker, I quit when I had my lung biopsy then got so discouraged and smoked a few today. My

daughter got mad at me but I feel like I'm gonna explode inside, sweet Jesus please help me. Thanks for letting me vent, I love ya'll and really appreciate the support. Vicky IPF 4/06

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[Guest guest]

Vicky...hang on. Read the board often. Do the best you can. We all have those down days and some down days are worse then other down days.

We pray for each other and trust God to do for us what we can't do for ourselves. Hugs. Sher ipf 5-06

Re: a newbie

thank you Grey for your reply, it means a lot to me, especially today. For some reason this is a very "down" day for me, I know its only been about a month since I found out what I have,but I dont think a day has went by that I havent cried. I cry for my kids, my husband, myself. I wonder why this horrible disease picked me. I know I sound selfish but I'm just so lost right now. My husband says I'm giving up and sometimes I think I am, but then, theyres that flicker of hope. My daughters wedding is in August, moved up from next yr just in case "mom" isnt here. I used to be a smoker, I quit when I had my lung biopsy then got so discouraged and smoked a few today. My daughter got mad at me but I feel like I'm gonna explode inside, sweet Jesus please help me. Thanks for letting me vent, I love ya'll and really appreciate the support.

Vicky IPF 4/06