Re: question again from K

[Guest guest]

Well, they are multiplying rapdily but we both think we can wait until tomorrow. He isn't in any pain. He is feeling really bad. He describes it like feeling with the old fashioned flu. Ok now, he is freezing. He has always been hot. He has lost 30 lbs but the only place he can be is confortable is in the chair or in bed covered up. This has been going on about a month and a half. Any ideas about this? When I asked the doc about this being cold, he said, "Men do that when they get older. If he were in his 80's maybe, but I didn't argue. Is that what happened to you? Thanks so much for the time. I've been busy for several days. Babysitting with 3 grandkids the oldest being 4. Ugh! I love them all dearly but I'm tired. I'll be back on line tomorrow trying to get through 650 emails. Whew!

You guys are busy tonight. Thanks so much K Central I. Beth wrote: , What I can tell you (and this has nothing to do with being a nurse) is that when I was on prednisone I bruised very easily and did get some spots like that. especially on my arms and legs. Are they painful? And do they seem to be getting more numerous rapidly? If they are just

there and they don't hurt, I would just wait till morning and then give the doctor a call and ask. When I was on pred, the bruises would come and go seemingly unprovoked. I don't know if the Immuran has anything to do with it, as I was never on it. If Don is in pain or if they are multiplying rapidly, you might want to try to get in touch with a doctor today. Hope that helps! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Re: Re: nurse in the group? Hello everyone -- I am finally on-line. My kids are here right now, but is there anyone in the support group that is a nurse? Don is having some problems and I have a few questions. I can't wait to get back in the groove of things. K Central Il.Joyce <janne5303yahoo (DOT) com> wrote: Sher, As far as we have been told, there is no nurse help approved to assist in the treatment with Flolan. They told us that they had patients as young as 15 and old as 82 doing it themselves. Well, it is not that easy, let me tell you. Insurance paid for a home health nurse to train us to do sterile dressings, but that was 3 visits. Nurses came several times to train us to mix and administer the medicine. Then we were on our own. Hasn't been fool proof! It is just by the grace of God that I am still alive. It has been a fiasco at times. Hugs, Joyce D.Pulmonary Fibrosis

1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 > > > >> > > >> > > > joyce> > > > wishing you the best of luck for the 14th.> > > > i will be crossing my fingers and praying> > > > that it all goes smoothly without incident.> > > >> > > > may> >

> >> > >> >> K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 ____________ _________ _________ _________ _________ __

[Guest guest]

,

Please call the doctor in the morning. If these tiny bruises (they can be called petechiae) are multiplying rapidly that could be a side effect of the Immuran that you don't want to ignore. I just was looking up some info on Immuran on the internet and one side effects listed is bruising and extreme fatigue. I would really be happier if you guys spoke to the doctor asap in the morning.

As far as feeling cold goes, you can't go by me. I've been cold since the day I was born. When I was a kid I wore flannel nightgowns to bed in August. LOL True story. If Don is feeling that bad, like he has the flu, the doctor needs to know.

I'm so sorry you two are going through this, it's just horrible. Give Don my love.

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: Re: nurse in the group?

Hello everyone -- I am finally on-line. My kids are here right now, but is there anyone in the support group that is a nurse? Don is having some problems and I have a few questions.

I can't wait to get back in the groove of things.

K

Central Il.Joyce <janne5303yahoo (DOT) com> wrote:

Sher,

As far as we have been told, there is no nurse help approved to assist in the treatment with Flolan. They told us that they had patients as young as 15 and old as 82 doing it themselves. Well, it is not that easy, let me tell you. Insurance paid for a home health nurse to train us to do sterile dressings, but that was 3 visits. Nurses came several times to train us to mix and administer the medicine. Then we were on our own. Hasn't been fool proof!

It is just by the grace of God that I am still alive. It has been a fiasco at times.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 > > > >> > > >> > > > joyce> > > >

wishing you the best of luck for the 14th.> > > > i will be crossing my fingers and praying> > > > that it all goes smoothly without incident.> > > >> > > > may> > > >> > >> >>

K

Central Il

Hubby ipf- 2006

As for me and my house, we will serve the Lord

14

____________ _________ _________ _________ _________ __

[Guest guest]

K,

What a lame answer: When I asked the doc about this being cold, he said, "Men do that when they get older.

He is cold because all his body energy is going to try to keep him oxygenated. He is cold because his blood is not carrying oxygen out to the extremities to keep him warm. He is cold because he is struggling and exhausted by coughing 24/7. Good grief!

You know what feels so good when I have that bone chilling cold? A blanket, robe or quilt just pulled out of a hot dryer. Oh, it is wonderful.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

> > > > >> > > > >> > > > > joyce> > > > > wishing you the best of luck for the 14th.> > > > > i will be crossing my fingers and praying> > > > > that it all goes smoothly without incident.> > > > >> > > > > may> > > > >> > > >> > >> >> > > > > > > > K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14> ____________ _________ _________ _________ _________ __>

[Guest guest]

Hi , When I first went on prednisone I bruised until I looked like my arm went through a grinder. The pred. was to fight infection in my lungs. I was COLD one min. burning up the next. It was winter and I would go out on the porch with bare feet to cool off. I didn't have fever, it was so strange. Prednisone is well known to cause flu symptoms. It is really nasty on the body. God Bless you both. Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Well, they are multiplying rapdily but we both think we can wait until tomorrow. He isn't in any pain.  He is feeling really bad.  He describes it like feeling with the old fashioned flu.     Ok now, he is freezing.   He has always been hot.  He has lost 30 lbs but the only place he can be is confortable is in the chair or in bed covered up.   This has been going on about a month and a half.   Any ideas about this?   When I asked the doc about this being cold, he said, "Men do that when they get older.   If he were in his 80's maybe, but I didn't argue.  Is that what happened to you? Thanks so much for the time.   I've been busy for several days.  Babysitting with 3 grandkids the oldest being 4.  Ugh!  I love them all dearly but I'm tired.   I'll be back on line tomorrow trying to get through 650 emails.  Whew!  You guys are busy tonight. Thanks so much KCentral I.   Beth <mbmurtha> wrote:,What I can tell you (and this has nothing to do with being a nurse) is that when I was on prednisone I bruised very easily and did get some spots like that. especially on my arms and legs. Are they painful? And do they seem to be getting more numerous rapidly? If they are just there and they don't hurt, I would just wait till morning and then give the doctor a call and ask. When I was on pred, the bruises would come and go seemingly unprovoked. I don't know if the Immuran has anything to do with it, as I was never on it. If Don is in pain or if they are multiplying rapidly, you might want to try to get in touch with a doctor today.  Hope that helps! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive       Re: Re: nurse in the group?Hello everyone -- I am finally on-line.  My kids are here right now, but is there anyone in the support group that is a nurse?  Don is having some problems and I have a few questions.I can't wait to get back in the groove of things. KCentral Il.Joyce <janne5303yahoo (DOT) com> wrote:Sher,As far as we have been told, there is no nurse help approved to assist in the treatment with Flolan.  They told us that they had patients as young as 15 and old as 82 doing it themselves.  Well, it is not that easy, let me tell you.  Insurance paid for a home health nurse to train us to do sterile dressings, but that was 3 visits.  Nurses came several times to train us to mix and administer the medicine.  Then we were on our own.  Hasn't been fool proof!It is just by the grace of God that I am still alive.  It has been a fiasco at times. Hugs, Joyce D.Pulmonary Fibrosis 1997    Bronchiectasis 2004    Pulmonary Hypertension 2008  Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc)  Rejected for Transplant 2006 .....I will not forget you.  Behold, I have engraved you on the palm of my hands.  Isaiah 49: 15-16 > > > >> > > >> > > > joyce> > > > wishing you the best of luck for the 14th.> > > > i will be crossing my fingers and praying> > > > that it all goes smoothly without incident.> > > >> > > > may> > > >> > >> >> KCentral IlHubby ipf- 2006As for me and my house, we will serve the Lord 14____________ _________ _________ _________ _________ __