Re: New to this board

[Guest guest]

Hey guys,, Bruce and Beth both will tell you, Keep going and your oxygen is

your best friend. I am still learning, and so much to learn.. The humor here

and suggestions will keep you. You always have an ear and shoulder. I still

and am struggling better than before that my life as i know it is over. But

there are different things to do and ways to make it easier.. I know Joyce and

linda have great ideas... Hang in there... Patti, CH<NJ, ipf 7'06, Pulm HTN

2'07, raynaud's, scleroderma etc....

> >

> > Hi,

> > I have recently been diagnosed with IPF, like within the last five

> weeks. I immediately went to the internet to find out all that I could

> and got way more than I bargained for. I managed to freak myself out,

> get angry with everyone and have cried myself to sleep a few times. I

> feel so helpless. I have always been blessed with pretty good health. No

> major illnesses and always strong enough to get through just about

> anything. I am 55 years old and have learned that there is very little I

> can do about changing other people, places and situations but have

> always been able to control what is going on with myself. I feel like my

> body has just turned into my head and heart's enemy. I am married, and

> have a wonderfully big family with 5 kids and 7 grandkids. You know I

> have been blessed. I really have no excuse for feeling as negative as I

> do... it really is not like me and I'm not loving this side of me.

> Acceptance is difficult. I have only been feeling poorly for about six

> months. I started noticing that I would become a little winded when I

> would climb the stairs at work (something I do at least 5-6 times each

> day). My boss was concerned that it may be something with my heart (she

> just experienced congestive heart failure 4 months ago) and she keep

> pushing me toward the doctor until I decided to have it checked out.

> Good news! My heart is in great shape! After the nuclear stress test and

> before the heart catherization, I got a terrible migraine headache and

> had to go to the emergency room. They did fix the headache but after

> they put that little finger oximeter on me they didn't concentrate on

> anything but my O2 levels. I spent a week in the hospital being stuck

> and re-stuck. I had CT, MRI's a bronchoscopy and the heart cath, as well

> as what ever else they did. They made the diagnosis and sent me home on

> O2, which I'm on pretty much 24/7. As long as I'm sitting quietly, not

> doing anything more than breathing my O2 levels are ok, but if I stand

> the levels drop right away. I am starting a pulmonary rehab this week,

> hopefully the exercise will help me cope a little better. I have

> returned to work, I have a desk job, and I carry my O2 with me. I'm

> hoping that I can count on you all to remind me that it's not over until

> it's over and help me feel like I do have some say in how things go.

> >

> > Thanks for letting me go on...

> > Darlene

> >

>

> Dear Darlene,

>

> I read your letter and felt a little like I was reading about myself.

> I'm newly diagnosed-though have been having exercise or stress induced

> shortness of breath for about 6 months. My new doctor sent me for a

> stress test-my heart was fine but when walking up a hill on the

> treadmill my pulse ox dropped down in the 80's. I compensated shortly

> afterward, and he pushed me to check it all again on the treadmill and

> it did the same thing. The next thing ordered was a PFT, which I did

> poorly with. After that a high resolution chest CT, which confirmed the

> finding of pulmonary fibrosis. I've seen a local pulmonologist. He

> wants me to see Chapman, a lung specialist at Cleveland Clinic

> Foundation in Cleveland, OH. He also said to have a bronchoscopy and

> biopsy if he orders it. Needless to say I feel stunned with all this

> information, overwhelmed to the point that I can ony read so much about

> this disease and then I have to back off. I think that is self

> preservation. I'm 53 and I would like it if this would all go away. I

> want to live a long and happy life. I have grandchildren and more

> hopefully on the way. I want to see my daughter get married.

>

> I've had Sjogren's for about 13 years-with eye and mouth dryness and

> arthritis aches head to toe, treated with Placquenil and Prednisone.

> I've been able to live with that, but I never dreamed this would happen.

> We don't have any history of this in my family.

>

> Now to top it off, I have to have a thyroid biopsy, and possible

> thyroidectomy. I've been treating hyperthyroidism with Tapazole for one

> year. The CT showed increased nodules on my thyroid.

>

> To me it seems the finger is pointing at Sjogren's as the culprit,

> whether that information will benefit me or not time will tell.

>

> Some days are better than others. I'm not on O2. My six minute walk test

> I stayed in the high 90's. I'm not bragging, I'm curious how much time I

> have left at this level. I'm thankful for all the information that the

> group is providing. I still have not told my kids. My husband and

> brother know.

>

> So thanks for any new information in advance.

>

> Patti

>

> s

>