Re: Re: kathleen

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I'm catching up on some emails that I missed when I was off line. My name is K and I am the care giver to my hubby Don, who has pf. I know what your Jim is going through. We too have been married for 38 years and we have been devistated with the diagnosis and progression of this wicked disease. We have often just sat and held each other and cried at the magnitude of it all. Last summer he was so healthy, even tho' we had the diagnosis. We had not a clue what pf was and since there were no symptoms we just carried on prancing through life, children and grandchildren and jobs. Then whoooom! It hit. I think we went through the mourning process, first denial and then extreme sandness. We still pop in and out of sadness frequently depending on how much trouble Don has at surviving. He hasn't had a really good day in a long time (like a week and a

half). Don is too old for a transplant and I know they do them at UCLA but he says he is not up for that. Like you, I have said "I have to be stronger for him". This board is the best place in the world for you to hang out. Ask questions and laugh. Don gets exasperated at the amount of time I spend on here but we have been helped so much by the group. Take your frustrations out here. Everyone is wonderful. Take care and like someone said to us, I'm so sorry you had to see us out, but welcome. K Illinois Hubby pf 2006patrickkathleen wrote: -OOPS!!!I should proof read...I have been married 38 years and I am 59...will be 60 on 7/25!.lol!!-- In Breathe-Support , "patrickkathleen" wrote:>> Mama-Sher,> > You are right I should have thought of this myself..I am married 59 > years to the love of my life, Jim. He is my "other" heartbeat.as I > tell him. We have 3 married sons..our oldest, 36, lives in Atlanta. > Ga and spends alot of time in Canada and overseas for his job, ---> Then come the twins, and .they are 33 is a > Major in the Army and ships out on May 28 for a year in South Korea.

> He has two children Logan 4 and Caelie almost 2. His wife and the > children will be living about an hour and a half from us. .used > to be in the Army, was in Iraq.and since has left the Army for a > government job.....along the same lines .....and he has a little > girle Cerys who is 14 months old. He and his wife were recently > transferred to Fort Lauderdale.about 3 hours from us. and > and their families were both within 40 minitues of us for the > past two years.....and we saw them constantly.......but jobs and > transfers have changed or are changing this.That us why I said that > I :ignored: this and just spent time with my grandkids.......now we > will see them all, but not almost every day.........I need to find > something else to fill these hours.so I do not "dwell"> > My Jim is my strongest..but he is also feeling the

pressures of this > and I have not found a way to help him....and I need to do this.\> > > Take care,> > Kathy> Florida.....Dx.4/17/07 PF > > In Breathe-Support , "Sher Bauman" <bofus@> wrote:> >> > Kathy....could you please add your state, Dx to your signature? I > get mixed up which Kathy I'm talking to. I can't always tell just by > content. Thanks.> > I was here when you first joined. I'm sorry I don't remember your > details....the board has grown so much.> > I can relate to the fear you must feel...we all relate.> > I was one who found I have a fatal disease on the net! Wow!> > How old are you? Kids? Do you have family close by to be supportive?> > Hugs to you> > Mama-Sher, age 69.IPF 3/06, NSIP 4/08

OR.> > Don't fret about tomorrow, God is already there!> > > > Re: My visit with pulmonologist today> > > > > > Joyce,> > > > I felt that hug right down to my toes. Other than the wait until > May > > 14th.......nothing else is happening right now...........i do > know > > the 3am wake up and the thoughts. That has been happening alot > > lately. > > Thanks again, this is hard.......take care,> > KAthy> > > > -- In Breathe-Support , "Joyce" <janne5303@>

wrote:> > >> > > > > > Kathy,> > > > > > We have all felt that prickly fear when we finally let the > truth > > set in.> > > There are several on this board who were told "pulmonary > fibrosis" > > and> > > sent home with no information. When they found it on the net, > it > > just> > > blew thier socks off. How cruel of a doctor to do that to a > > patient.> > > > > > I think it is easy at first when we aren't feeling so awfully > bad to> > > ignore the reality of this disease, but as time wears on and > the > > disease> > > begins to progress....we get hit in the face whether we want to > > know or> > > not.> > > > > > I do know the fear, the sadness, the

grieving....I've walked > that > > walk> > > and still walking. Still wake up in the night scared. Please > know > > that> > > we are here for you and expect that you will be here when we > need > > you. > > > We "get it"....we live it.> > > > > > I am praying that your progression will be slowed or stopped. > Is > > there> > > a plan?> > > > > > Big hugs coming your way! [i love God]> > > > > > > > > > > > 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> > > > > > > > > > > > > > > > > > >> > > > > > > Here is an e mail that we sent out today......just > wanted to> > > > > update> > > > > > > all of you here too. Take care and wishes for easy > breathing> > > > going> > > > > > > out to all of you!> > > > > > >> > > > > > >> > > > > > > To bring you all up to date, Kathy had a new PFT test > done> > > > about 2> > > > > > > weeks ago. This morning we met with the local> > > > > Pulmonologist .Again,> > > > > > > this is a mixed bag. The amount of air that her lungs > can> > > > hold has> > > > > > > again decreased. As of April

2006, her lungs could hold > 59%> > > > of> > > > > where> > > > > > > they should be, and in October of 2007 it dropped to > 53%.> > > > This> > > > > last> > > > > > > PFT showed that it has now dropped to 49%. For a woman > her> > > > age and> > > > > > > weight, Kathy's lungs should hold 4.86 liters of air. > Hers> > > > hold> > > > > 2.38> > > > > > > liters of air and therefore her lung capacity has > diminished> > > > to> > > > > 49%.> > > > > > >> > > > > > > In May, we will go to Shands Hospital to consult with > the> > > > > Transplant> > > > > > > Team. The Doctor we

saw today does not believe that > Kathy > > has> > > > > entered> > > > > > > her last 12 months, which would necessitate a > transplant. We> > > > will> > > > > > > confirm that at Shands.> > > > > > >> > > > > > > This news should probably be expected. It is well > within the> > > > rate> > > > > of> > > > > > > deterioration predicted by the physicians, however it is> > > > > > > disappointing to hear that the lung deterioration > continues.> > > > > > >> > > > > >> > > > >> > > >> > >> >> K Central Il Hubby ipf- 2006 As for me and my house, we will

serve the Lord 14

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