Support Group

[Guest guest]

Hi to everyone, I'm a newbie and just was lucky enough to happen upon your support group. I have COPD and was diagnosed with IPF in March of '05. I was put on prednisone and I am still taking it, I'm not on Q2. I did go to Pulmonary Rehab and I was doing great, but in January of '06 I was in the hospital for nine days with pneumonia. It took me a long time to start feeling better. My pulmonary doctor is slowly reducing my prednisone I am now taking only 6mg every other day and I am not doing so good, I have an appointment with him this Wednesday and we shall see what he decides. When I first found out I had IPF I cried for two weeks and was feeling very sorry for myself because now I have a double wammy. But I decided there was nothing I could do about it, I have what I have and I will try and make the best out of my life and try and enjoy myself the best I could. The doctor couldn't figure out how I could have developed PF thats why he called it IPF. But talking to my children we kind of figured it out. My husband died of asbestos cancer and when he used to come home from working all day he would take his work clothes off and put them by the washing machine and I would go down and put them in the washer. So I was handling his clothes which had asbestos film on them. At least thats what we came up with - could be. Love to all, Lillian Draw close. Hold hands. Life is short. God is good.

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[Guest guest]

Welcome Lillian,

Sorry that you're here, but glad that you found us. Everyone here has been very helpful and understanding since I joined on only a few weeks ago. My Dad was diagnosed with IPF in March of this year.

You mentioned that you had pneumonia--I was wondering if you've had a pneumovax vaccine this year to help prevent a recurrence? It was recommended to my Dad and he had it done before starting on his medications.

anne (dad ipf 03/06)

Support Group

Hi to everyone,

I'm a newbie and just was lucky enough to happen upon your support group. I have COPD and was diagnosed with IPF in March of '05. I was put on prednisone and I am still taking it, I'm not on Q2. I did go to Pulmonary Rehab and I was doing great, but in January of '06 I was in the hospital for nine days with pneumonia. It took me a long time to start feeling better. My pulmonary doctor is slowly reducing my prednisone I am now taking only 6mg every other day and I am not doing so good, I have an appointment with him this Wednesday and we shall see what he decides. When I first found out I had IPF I cried for two weeks and was feeling very sorry for myself because now I have a double wammy. But I decided there was nothing I could do about it, I have what I have and I will try and make the best out of my life and try and enjoy myself the best I could.

The doctor couldn't figure out how I could have developed PF thats why he called it IPF. But talking to my children we kind of figured it out. My husband died of asbestos cancer and when he used to come home from working all day he would take his work clothes off and put them by the washing machine and I would go down and put them in the washer. So I was handling his clothes which had asbestos film on them. At least thats what we came up with - could be.

Love to all,

Lillian

Draw close. Hold hands. Life is short. God is good.

Stay in the know. Pulse on the new Yahoo.com. Check it out.

[Guest guest]

To Anne, Thank you for your welcoming and for your e-mail. Yes, I did have the pneumonia vaccine. Who knows if I didn't have the vaccine I might have been in real bad shape, although I can't imagine because I was really sick. Lillian Draw close. Hold hands. Life is short. God is good.anne wolf wrote: Welcome Lillian, Sorry that you're here,

but glad that you found us. Everyone here has been very helpful and understanding since I joined on only a few weeks ago. My Dad was diagnosed with IPF in March of this year. You mentioned that you had pneumonia--I was wondering if you've had a pneumovax vaccine this year to help prevent a recurrence? It was recommended to my Dad and he had it done before starting on his medications. anne (dad ipf 03/06) Support Group Hi to everyone, I'm a newbie and just was lucky enough to happen upon your support group. I have COPD and was diagnosed with IPF in March of '05. I was put on prednisone and I am still taking it, I'm not on Q2. I did go to Pulmonary Rehab and I was doing great, but in January of '06 I was in the hospital for nine days with pneumonia. It took me a long time to start feeling better. My pulmonary doctor is slowly reducing my prednisone I am now taking only 6mg every other day and I am not doing so good, I have an appointment with him this Wednesday and we shall see what he decides. When I first found out I had IPF I cried for two weeks and was feeling very sorry for myself because now I have a

double wammy. But I decided there was nothing I could do about it, I have what I have and I will try and make the best out of my life and try and enjoy myself the best I could. The doctor couldn't figure out how I could have developed PF thats why he called it IPF. But talking to my children we kind of figured it out. My husband died of asbestos cancer and when he used to come home from working all day he would take his work clothes off and put them by the washing machine and I would go down and put them in the washer. So I was handling his clothes which had asbestos film on them. At least thats what we came up with - could be. Love to all, Lillian Draw close. Hold hands. Life is short. God is good. Stay in the know. Pulse on the new Yahoo.com. Check it out.

Get your email and more, right on the new Yahoo.com

[Guest guest]

On Saturday October 14th Arlen Oakes and I will host the first Chicago land/ Nortwest Indiana PF/Ipf Support group meeting. It will be held at

el's restaurant

4141 Calumet Avenue

Hammond, In.

We will start at 9:00 a.m.. Bring your spouse/ caregiver. This will be an informal breakfast, everyone buy's their own, and opportunity to meet and talk with other pf/ipf patients. Please RSVP by Saturday October 7th at . Hope to see alot of you there.

Gordon Beck ipf/uip 12/03

Re: Hi All

Peggy,

Of course this is why we are here. We are about more than our sickness. We are children of God living in the mortal world with other problems to bear. All of these problems are hard on you and make it difficult to fight the fight. You need friends to hold you up when you feel like you are falling. We are your friends.

The poor baby. It is hard enough on us old guys to face sickness. What caused the kidney to fail?

Hang on, Peggy. You know and I know that God has a purpose in everything.

Hugs and many prayers,

Joyce PF 1997>> Well I know things have been so heart breaking for me lately, my spirit has> been hazy.. I think the ol' devil is after my soul and my family.> > My 14 year old twin grand-daughter has been tested this past few weeks for> kidney problems. They had taken an x-ray for the curvature in her spine,> which they will ck again in 6 months but they saw a problem with her kidney.> This what my daughter sent me.> > We saw the nephrologist today and basically Amber has one working kidney her> left . She said this is fine as long as its working ok. We have to watch> Amber's salt intake, protein, no contact sports, no flipping nothing that> can hurt that kidney or her spleen, no ibuprofen Tylenol only. Must push> fluids (like we all already do) She gave Amber a note so she can drink> freely at school. She did blood work and will have the results on Monday.> Will see amber again in 6 months unless there is a problem such as high> blood pressure or UTI. Oh and no more pickle juice!!> > this child is the wild one. NEVER still. Can cook and clean like any woman> and has since she was tiny. Was a cheer leader until all this started. I do> not know how they will ever keep her from running jumping. Please please> pray for her. (me too)> > This year has been such a trial but I KNOW God will be here for us. I Praise> Him in ALL things.> I know this post isn't what we're here for but I know I have support here> and really need it right now. You are all wonderful.. Thanks, Love and> Prayers, Peggy>

[Guest guest]

Gordon,

Oh, I wish I could come. I live in southern Indiana, down by Louisville. I have company that weekend. If there are other meetings planned, let me know. It is a long way for me...but maybe, who knows. I would love it!

Hugs, Joyce PF 1997

> >> > Well I know things have been so heart breaking for me lately, my spirit has> > been hazy.. I think the ol' devil is after my soul and my family.> > > > My 14 year old twin grand-daughter has been tested this past few weeks for> > kidney problems. They had taken an x-ray for the curvature in her spine,> > which they will ck again in 6 months but they saw a problem with her kidney.> > This what my daughter sent me.> > > > We saw the nephrologist today and basically Amber has one working kidney her> > left . She said this is fine as long as its working ok. We have to watch> > Amber's salt intake, protein, no contact sports, no flipping nothing that> > can hurt that kidney or her spleen, no ibuprofen Tylenol only. Must push> > fluids (like we all already do) She gave Amber a note so she can drink> > freely at school. She did blood work and will have the results on Monday.> > Will see amber again in 6 months unless there is a problem such as high> > blood pressure or UTI. Oh and no more pickle juice!!> > > > this child is the wild one. NEVER still. Can cook and clean like any woman> > and has since she was tiny. Was a cheer leader until all this started. I do> > not know how they will ever keep her from running jumping. Please please> > pray for her. (me too)> > > > This year has been such a trial but I KNOW God will be here for us. I Praise> > Him in ALL things.> > I know this post isn't what we're here for but I know I have support here> > and really need it right now. You are all wonderful.. Thanks, Love and> > Prayers, Peggy> >>