Re: [new and scared

[Guest guest]

Hi Eileen, my name is laura, I was diagnosed too with Pulmnary fibrosis, then i got the diagnosis of pulmonary hipertension, it got worse pretty fast, because i was dagnosed with scleroderma about two ears ago, and then my lungs didn't look nearly as bad as they do now.

I have great hopes, I pray everyday for a miracle, i have three sons, my oldest son is 19 years old, my other son is 11 and the youngest is autistic his name is Robby, As you can see my little son is the one who needs me the most, and I wish i could stay with him for many, many more years.

Only God knows if I would be able to live many more years. In the meantime we are trying hard to make ends meet, my husband is retired and we are living on Social security benefits, my insurance is the high risk insurance because no other insurance company would take me with a preexisting condition, anyway, the monthly payment for my insurance went up tp more than 300 por month and the deductible is 2000, and well is very complicated.

I wasn't born here, i am mexican and I came here about three years ago on a K-3 visa, and later I got my permanent resident card. In fact i was diagnosed in Mexico for scleroderma, because the reumathologist here would not see me without insurance, then finally we were able to ge the state insurance.

I was working as a PCA but when i was diagnosed with the pulmonary hipertension the doctor told me I coulnd't work anymore. and the company i was working for, woulnd't let me go back to work whitout the doctor's permission. Im not a citizen and I don't think i qualify for disability benefits.

Things are getting really tough, my husbad and I are very worried. My illness seems to be getting worse everyday, Im on oxigen 2lt, and at times i need 3lt.

We live in Baton Rouge Louisiana. And here in town I only know another lady who has the same diagnosis as I do. She refered me to the doctor im seen now, and she assured me that doctor will help me. I sure hope so, aparently that doctor actually saved her lfe, that is why she trust him so much. I want to trust him too.

The greatest doctor is my father God, and he will make his will on me.

happy new year everyone.

Subject: Re: new and scaredTo: Breathe-Support Date: Wednesday, December 31, 2008, 11:03 AM

Hi Eileen... I'm sad to hear of your dx (diagnosis) but if you must deal with it then you are in the best place you can be. This is an extremely supportive board and there is always someone to respond to a question or talk to. Beth is our moderator and she is very good to reply.

I sure understand you being scared and tired. We all have had to deal w/fear, for different reasons and tired goes w/the territory I think.

Tell us your age, where you live and is the "we" you mention husband and kids?

I know the market is awful for housing now.

You may be able to apply for disability.. .I have no idea your circumstances but we will get acquainted as you post more.

Go to the web page and click on Files where you will find lots of information as well.

Take things one at a time, one day at a time...

Welcome

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

new and scared

Hi My name is Eileen. I was diagnosed w IPF/UIP in May 2007. I have actually been doing very well till this Thanksgiving. I got the flu and my oxygen dropped. The doctor put me on 02 temporarily saying he thought I would go back up but I have not. Monday he told me I have to face the possibility my fibrosis has worsened and I will need to stay on 02. I happen to be off from work this week so I am trying to take it easy but I am scared. I am so tired. How am I going to keep working? If I don't work we will lose our house. Not a good market to have to sell now. I am just scared and need someone who knows what it is like to talk to.

[Guest guest]

Hi

Thank you so much for your reply. It is a terrible thing to say but

it is good to find someone in the same situation. We - is my huband

and I. We do not have children. Always wanted them but God did

not choose it to be. I do have the most wonderful nieces and nephews

that I am very close to.

I also believe and pray for a miracle. I have actually been very

positive and upbeat about the whole thing but I was taken aback when

this happened so suddenly. Perhaps having off from work this week

was not a blessing because I am home alone and thinking all the

time. We live in Boca Raton, Florida. I am originally from New York

but I came down here 17 years ago with the company I worked for then

and I met . My family all followed me down here.

My doctor says I need to be evaluated for a transplant but I am

overweight so none of the transplant centers will even see me till I

lose about 40 lbs. My thyroid was very low so the doctor put me on

synthroid. He keeps uping the dose but nothing is happening. I

never lose without exercise and I am just too tired to exercise.

I am so happy to have found this group.

Eileen

>

> From: Sher Bauman

> Subject: Re: new and scared

> To: Breathe-Support

> Date: Wednesday, December 31, 2008, 11:03 AM

>

>

>

>

>

>

>

> Hi Eileen... I'm sad to hear of your dx (diagnosis) but if you must

deal with it then you are in the best place you can be. This is an

extremely supportive board and there is always someone to respond to

a question or talk to. Beth is our moderator and she is very

good to reply.

> I sure understand you being scared and tired. We all have had to

deal w/fear, for different reasons and tired goes w/the territory I

think.

> Tell us your age, where you live and is the " we " you mention

husband and kids?

> I know the market is awful for housing now.

> You may be able to apply for disability.. .I have no idea your

circumstances but we will get acquainted as you post more.

> Go to the web page and click on Files where you will find lots of

information as well.

> Take things one at a time, one day at a time...

> Welcome

> MamaSher, age 70. IPF 3-06, OR.  

> Nasturtiums

> Don't fret about tomorrow, God is already there!

>

>

> new and scared

>

>

>

> Hi

> My name is Eileen. I was diagnosed w IPF/UIP in May 2007. I have

> actually been doing very well till this Thanksgiving. I got the flu

> and my oxygen dropped. The doctor put me on 02 temporarily saying

he

> thought I would go back up but I have not. Monday he told me I have

to

> face the possibility my fibrosis has worsened and I will need to

stay

> on 02. I happen to be off from work this week so I am trying to

take

> it easy but I am scared. I am so tired. How am I going to keep

> working? If I don't work we will lose our house. Not a good market

to

> have to sell now. I am just scared and need someone who knows what

it

> is like to talk to.

>