Re: new subscriber - similar problems

November 4, 2007

I was diagnosed in August and confirmed by VATS in October. I'm 58

years old. I can't give you the answers you'd like to hear but what i

can tell you is that there are so many people here defying the odd in

terms of longevity. In terms of quality of life we all can, if you

just have the determination.

You mention three different things as if they are somewhat equals-

oxygen, wheelchairs, not being on earth. You are still in shock but

oxygen and wheelchairs even are positives. They don't have to

diminish our quality of life. They are tools to keep it as good as

possible. Oh I hated the first time I went out the door with oxygen,

but I can do things on oxygen I can't without and I protect my other

organs with oxygen. At first, I'd sit here and decide not to run

somewhere I wanted to because hooking up to the portable was a pain.

Now, I accept it and I do anything I would have done before. Oxygen

is a blessing. You will reach the point where you're so thankful for

it and how it helps you enjoy your grandchildren and family. Same

thing with a wheelchair although few of us in them or even a scooter.

Is it really that bad to get around seated as opposed to standing?

What is really key to your quality of life? Enjoying things, family,

friends. All of these can be done with oxygen, with wheelchairs and

even other things you currently think of as limiting.

Don't sabotage yourself by deciding certain things diminish life.

Also if you need oxygen don't dare try to get by without it and put

your entire system in danger as well as just lacking the energy you

can still have.

We're all going to die. I knew that 50 years ago. Now, I know it may

be sooner than I expected (my diagnosis is confirmed as IPF) but then

I'm stubborn so who knows how long I'll live or what advancements

will take place. I've taken care of everything in my life related to

death so no more talking or thinking about that. What I'm about and

what this board is about is living. Learning to live as well and as

long as we can. Do those things you might have put off. I know its

given me a good butt kick to not say I'm going to do this or that

sometime in the future. I'm going to do them now or soon. I'm already

making changes to accomodate my current health and anticipated future

health, simplifying things and maximizing enjoyment. The fight you

need most to put up is the one to enjoy life the most you can

whatever your health along the way. I'm not going to let oxygen

restrict me. If I eventually need a scooter I'm going to be hell on

wheels but try not to run over people like I've been run over in

Walmart. I'm going to use the energy I have for the things in life I

want most.

As to anxiety, it works both ways. Yes, anxiety does impact shortness

of breath. But, also shortness of breath intensifies the anxiety.

Depression works that way as well. Lack of oxygen leads to

sluggishness and fatigue and more depression. However, the diagnosis

itself leads to both anxiety and depression.

I can only tell you what I'm doing. I'm making lists of those things

I most want to do for the next year (actully I chose ten months for

some reason) and I'm going to do them, regardless of condition or how

much oxygen it requires. I've made incredible new friends on the

board and they are such great role models as they are further along

than we are. I'm not going to think about when I'm going to die. I

never have known and don't know now. So, maybe its sooner. But wasn't

that always possible. You can't change the past, you can't control

large parts of the future, but you can live the present.

If you're noticing changes in how you feel physically don't fight

them, understand them. If your oxygen is dropping, a little go juice

can help that. Don't avoid oxygen and impact how you feel and your

future health. I've walked more on my treadmill since i got home from

my VATS (biopsy) than in years of supposed healthiness. I got so

excited when I found out how well I could do with oxygen on it. So,

i'm exercising more. The other day at the pulmonologist office doing

laps with the nurse, I told her now way you're going to wear me out

(now yes I had the advantage of oxygen) but I could have done a few

more laps and I think she was very glad we'd completed our walk.

You don't yet know your specific disease and there are many that fall

under ILD. However, you ultimately can't control the disease. But you

can control how it impacts you and your life. I live in Dallas and

been harassing the Chattanooga group today because they had a

wonderful gettogether recently. But, next year I'm going to be there.

I don't know how or how much oxygen, but its on my list. I realized

that in addition to the weather, I hadn't made the trips I wanted

recently to the Fort Worth and Dallas zoos in some part because I

felt I'd get exhausted from being so out of shape and not enjoy them.

Now, I know the truth and I'm going and going to have the best time.

I'll have my oxygen on my shoulder. I'll check my oximeter to make

sure my levels are ok. If they start down which would lead me to

breathlessness, I'll just turn up the oxygen a level.

Tell me.....what is there that you want to do that you can't with

oxygen? Oh yes, I thought at first how confining it would be. Now I

can't think of a single thing on my list of things I'd like to do

that it impacts. Now, I can't climb Mt. Everest, but wasn't planning

that anyway.

The other web sites will educate you on the disease. Use this board

and its members to educate you on living with the disease. Hell,

they're good role models for living with or without the disease.

>

> In March 2007 I was diagnosed with ILD. This was found through a

> routine physical - no symptoms on my part and no knowledge by me

that

> this disease even existed. The doctors still have some question on

> the cause, most likely connective tissue related. I am now on

> prednisone, slowly decreasing the dosage in an effort to get it

under

> control. Unfortunately, my last appointment indicated abnormal

> diffusing capacity, and we are now trying a different med to turn

> that around. I am participating in local pulmonary rehab, and have

> regular pulmonary visits at Mayo Clinic, as well as with my local

> physician.

>

> So much of what I have read on the internet has been very negative,

> but now I've found a couple of chatrooms like this where I can

> connect with people who have experience and optimism, and give

> support. I'm starting to realize what to expect with this disease,

> and I don't like it. The doctors tell me that all cases are

> different, and symptoms vary as well.

>

> Since acknowledgement of this disease is just starting to sink in

to

> me, I'm really scared about the future. I know most of you have

> probably experienced this too. There are just so many unknowns.

> Most days I feel " normal " and my hopes are high that I can fight

> this. I've been noticing slight changes in how I feel physically,

and

> that makes me even more nervous. I think these physical changes can

> sometimes be intensified by my anxiety, but then maybe I'm just

> hoping that is the case. I've been wondering why this has happened

to

> me. Those days of depression are hard to fight. I don't want to be

on

> oxygen, in a wheelchair, or not be on earth to enjoy my

grandchildren

> or be a companion for my husband and children. This is not how my

> life at 55 was suppose to be!

>

> Does anyone know of any natural or herbal help available? I want to

> pursue all avenues available and come to my next doctor's

appointment

> with more knowledge. At this point, I'm willing to try anything. I

> started taking cellcept about a month ago. Prior to that, I was on

> aziathioprine but when my diffusing capacity went into the abnormal

> range, the Mayo dr. thought we should change that medication to see

> if a change would make a difference. I'm scheduled to revisit there

> in January, and may undergo a lung biopsy along with new testing to

> see if there is a specific reason as to why this is happening. In

the

> meantime, I wait. And worry. I know my life won't be " normal "

again.

> I'm just hoping that you with experience can give me some hope.

>

> gigi

>

November 4, 2007