Newly Diagnosed very scared

November 26, 2009

I too was recently diagnosed and still in the scared stage. I feel its so unfair

and hope n pray for mercy from our Lord. Take one day at a time and live life

to its fullest for u n your kids.

E Tejeda/36/ILD 11-09/Columbia, SC

November 26, 2009

Hi Tammy,

I too have uip and am scared beyond words. Hopefully we will find solace here together.

To: Breathe-Support Sent: Wed, November 25, 2009 11:56:59 PMSubject: Newly Diagnosed very scared

Hello all as I sit here and write this I imagine everyone of you wrote something similiar to this when you were first diagnosis. I am a healthy 35 yo mother of 4 beautiful children and was diagnosis last week with IPF. The lung biopsy came back today as UIP which as I understand is the worst kind to have. I am not sure what all this means except that I am terrified and could use some help in understanding what to expect. I would love to hear from some of you and build new friendships with people who can relate to the fear I have. As of now my pulmonary function test are the only thing that are abnormal. I sat 98-100% on room air even with activity. I do get slightly short of breath with physical activity but continue to go to the gym 5-6days a week and work out. I am also a nurse however my patient population is the neonates. I care for sick or premature infants. THanks for listening and please help me any way you feel appropriate even if it is just

some words of encouragment. May God Bless all of you and may he also grant me peace and courage as I face this disease. Tammy

November 26, 2009

,

Your letter was inspiring. I have to think that there is no expiration date too and that is so hard at times. What forms of nutrition, exercise do you do. Did you go for pulmonary rehab? I am still waiting to hear on that.

To: Breathe-Support Sent: Thu, November 26, 2009 1:09:22 AMSubject: Re: Newly Diagnosed very scared

Hi Tammy,

I'm very sorry to hear of your scarey diagnosis especially since you are so young...you have found a great support base here. Right form the start slam it into your thinking that there is NO EXPIRY DATE STAMPED ANYWHERE ON YOUR PERSON...got that........

Lots of people even those with UIP live way beyond any of the prognosis data you'll read about on the Internet. Those figures are Averages & Based on study populations of patients that were in a much older mean age bracket. In the early days of PF Research most known PF Patients were in their 70's & 80's. More people are being diagnosed becuase of HRCT Scan Technology. So take heart & try not to panic.

It's great that you are so active & that your Sats are holding up so well.....all good signs. I'm also active but I do use O2 for exercise, housework & air travel.

Look there will be heaps of replies when folk wake up ...I'm in Australia & its only 5pm on Wednesday afternoon right now. I thought I'd answer you straight away just so you know we all do care!

You'll get heaps better advice from the many knowledgeable sorts on this Forum.

I'm a 'self-help' sorta gal....I refused Steroid/Chemo Medication & I'm going it alone using nutrition, exercise & oxygen. By some good fortune I've stayed stable since my diagnosis in May 2007. There are many people on this Forum who do use Medication & they're very happy with their outcomes.

Even though I also had a Lung Biopsy it wasn't conclusive as to which type of PF I have because the single sample taken was too thin. My HRCt scan indicated that I have UIP too. Since then they are thinking I have a Connective Tissue Disorder at the bottom of it all but nothing is clearly showing in my Blood Screens. You'll find that everyone's story is different in detail but that we also share much in common!

Ask questions..tell us all about yourself... where do you live???....we' re one big Air Family!

Regards,

in Oz

IPF; Fibrotic NSIP/UIP???

Raynaud's Phenomenon

May 2007

>> Hello all as I sit here and write this I imagine everyone of you wrote something similiar to this when you were first diagnosis. I am a healthy 35 yo mother of 4 beautiful children and was diagnosis last week with IPF. The lung biopsy came back today as UIP which as I understand is the worst kind to have. I am not sure what all this means except that I am terrified and could use some help in understanding what to expect. I would love to hear from some of you and build new friendships with people who can relate to the fear I have. As of now my pulmonary function test are the only thing that are abnormal. I sat 98-100% on room air even with activity. I do get slightly short of breath with physical activity

but continue to go to the gym 5-6days a week and work out. I am also a nurse however my patient population is the neonates. I care for sick or premature infants. THanks for listening and please help me any way you feel appropriate even if it is just some words of encouragment. May God Bless all of you and may he also grant me peace and courage as I face this disease. Tammy >

November 26, 2009

Tammy,

Welcome to Breathe Support. I am so sorry that you have reason to even look for a group like this but since you did I'm glad you found us.

You're correct. We've all written messages similar to yours in many ways when we first got here. The most important thing I can tell you now is you are not alone! We're here and we totally understand what you are going through.

My name is Beth and I was diagnosed in June of 2006 with fibrotic NSIP, another form of pulmonary fibrosis. I was 46 when I was diagnosed. It is scary as hell. But 3 and a half years later I'm still here in exactly the same condition as when I was diagnosed. I just had a round of pft's and I'm completely stable. Now of course we are all different but the thing to remember is there is no expiration date tatooed on you anywhere to try to take all the predictions about life expectancy with a major grain of salt.

It's good that you've been diagnosed early and from what you said you are clearly still able to get the oxygen you need without supplementation. Keep an eye on your sats. Most of us have purchased our own oximeters to do just that. Since you're a nurse (as am I) you understand the importance of keeping them from dropping below 90 for any extended period of time.

Hopefully you've made your way over to www.pulmonaryfibrosis.org. The PF Foundation is a great resource. I don't know where you live or where you were diagnosed but it would be worth the effort to be evaluated at a university medical center with specialists in interstial lung disease. www.ipfnet.org will take you to map with links to 22 such centers across the US.

If you take away one thing from all this today, the most important thing is that you have landed among friends who 'get it'. I know you're frightened but you are not alone in this. Keep breathing and keep taking good care of yourself. We're here to help in any way we can!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wed, November 25, 2009 11:56:59 PMSubject: Newly Diagnosed very scared

Hello all as I sit here and write this I imagine everyone of you wrote something similiar to this when you were first diagnosis. I am a healthy 35 yo mother of 4 beautiful children and was diagnosis last week with IPF. The lung biopsy came back today as UIP which as I understand is the worst kind to have. I am not sure what all this means except that I am terrified and could use some help in understanding what to expect. I would love to hear from some of you and build new friendships with people who can relate to the fear I have. As of now my pulmonary function test are the only thing that are abnormal. I sat 98-100% on room air even with activity. I do get slightly short of breath with physical activity but continue to go to the gym 5-6days a week and work out. I am also a nurse however my patient population is the neonates. I care for sick or premature infants. THanks for listening and please help me any way you feel appropriate even if it is just

some words of encouragment. May God Bless all of you and may he also grant me peace and courage as I face this disease. Tammy

November 26, 2009

Tammy

Welcome here even though wish you didn't need us. Where are you?

We would also be interested in where you were diagnosed and by whom? If

it was not a Center of Excellence or and ILD center I would strongly

recommend a second opinion at one and more thorough diagnosis. I'm

curious as to what even led to the diagnosis and biopsy with your oxygen

saturation so high. Most of us took much longer for anyone to believe we

had a problem.

One of the reasons I especially mention the second opinion at a Center

with Expertise is the rarity for you to have UIP so young and with no

identified cause. So I would want to be sure a second pathologist

specializing in the disease had seen the biopsy and that possible

underlying causes from hypersensitivities to connective tissue diseases

had been thoroughly evaluated.

Now beyond diagnosis and good medical care, it sounds like you're

feeling pretty good. Remember that. Don't dismiss the reality of what

may happen in the future but don't live it either. Life with IPF can be

good and learning to live and make the most of it is what this site is

about.

At your age too, I'm sure you'll probably consider a future transplant

so you have plenty of time to research and discuss and prepare toward

it.

>

> Hello all as I sit here and write this I imagine everyone of you wrote

something similiar to this when you were first diagnosis. I am a healthy

35 yo mother of 4 beautiful children and was diagnosis last week with

IPF. The lung biopsy came back today as UIP which as I understand is the

worst kind to have. I am not sure what all this means except that I am

terrified and could use some help in understanding what to expect. I

would love to hear from some of you and build new friendships with

people who can relate to the fear I have. As of now my pulmonary

function test are the only thing that are abnormal. I sat 98-100% on

room air even with activity. I do get slightly short of breath with

physical activity but continue to go to the gym 5-6days a week and work

out. I am also a nurse however my patient population is the neonates. I

care for sick or premature infants. THanks for listening and please help

me any way you feel appropriate even if it is just some words of

encouragment. May God Bless all of you and may he also grant me peace

and courage as I face this disease. Tammy

>

November 26, 2009

Oh , HA!.... all my inspiration is Borrowed..channelled from what I've learnt from this Forum....that expiry date thing is a MANTRA for us all! I think our Princess Peggy was the one who first taught us THAT!

My Nutrition is pure Common Sense..we are what we eat...soooooo only good nutritious food goes into my gob these days..lots of Fibre...5+ veges per day..2+ serves of fruit....fresh lean meat 3 times a week...fish 2 times a week & a couple of 'vego' sittings using Tofu or Pulses/Legumes. Whole grain Bread/Rice/Pasta etc....Pure Whole Milk/Cheese/Butter (to get all the fat soluble vitamins).....

Total ban on fried food..no hot chips or snack crisps or pies/tarts/bagels/croissants...no more bought biscuits or cakes...all of that is BANNED! Choccies are on the VERY Limited list....Dark Choccy & the BEST only will do! After all it is one treat I allow myself.

Exercise is frequent but moderate & definitely NOT aerobic...I do resistance traing using weights...walk in water exercise at my local pool..arm exercise there too separate to the walking stuff.....Tai Chi...walking ..walking ...WALKING! Housework. gardening all count as Exercise for me! Stretching stuff...all good but I don't over exert myself. Lots of little rests in between Routine.

Come to us whenever you're feeling scared or panicky ..we'll hold your hand..might even give you a laugh or two!

Cheers,

in Oz

PS Where do you LIVE...I'm a MAP freak..gotta look you up & get you pinned!

> >> > Hello all as I sit here and write this I imagine everyone of you wrote something similiar to this when you were first diagnosis. I am a healthy 35 yo mother of 4 beautiful children and was diagnosis last week with IPF. The lung biopsy came back today as UIP which as I understand is the worst kind to have. I am not sure what all this means except that I am terrified and could use some help in understanding what to expect. I would love to hear from some of you and build new friendships with people who can relate to the fear I have. As of now my pulmonary function test are the only thing that are abnormal. I sat 98-100% on room air even with activity. I do get slightly short of breath with physical activity but continue to go to the gym 5-6days a week and work out. I am also a nurse however my patient population is the neonates. I care for sick or premature infants. THanks for listening and please help me any way you feel appropriate even if it is just> some words of encouragment. May God Bless all of you and may he also grant me peace and courage as I face this disease. Tammy > >> > __._,_..___> Reply to sender | Reply to group Messages in this topic (2) > Recent Activity: * New Members 4 > Visit Your Group Start a New Topic > MARKETPLACE> Going Green: Your Yahoo! Groups resource for green living> > ________________________________> > Going Green: Your Yahoo! Groups resource for green living> > Switch to: Text-Only, Daily Digest â€¢ Unsubscribe â€¢ Terms of Use> .>

November 26, 2009

Bruce,

Thanks for the response to my initial email. Well the way this all came about was at my annual physical with my doctor I mentioned to her that I have noticed i get short of breath a little easier then I ever used to and she decided to do a CTscan. I guess i should mention that I have had crackles in my lower lobes for at least 4 years and the docs never bothered to investigate why. Ok so back to the CT scan, the results were read that there were changes worriesome of pulmonary fibrosis, so I was referred to a local pulmonologist (omaha< NE) he spent about 5 mins with me and tells me I needed to have a lung biopsy, I then met with the surgeon two days later and was in the OR having my lung biopsy last friday. i got the call yesterday from the surgeon that the pathologist (Dr. Katzenstein from syracuse NY) read it as UIP however there were large areas of increased inflammation that is consistent with a connective tissue disorder. So now I am to

meet with the pulmonologist and surgeon on tuesday to develop a plan of care. I talked to my husband tonight and feel very strongly thAT I need to go to denver or LA and have an eval done at one of the centers of excellence. I know that my pulmonologist here in omaha wants to start me on steriods ASAP and i am not sure if that is the right thing my head is spinning right now and I dont know enough about the disease to know what I should do. Any thoughts on this subject? i suppose it is also important to mention that I have a history of Rheumatoid arthritis and raynauds phenomenon. Not sure if this plays a role on the type of IPF i have but for some reason I dont have a lot of confidence in what I have been told so far. Do you know much about the denver center? Or the LA clinic?Do i just call them and ask for an appointment of do i need my doctor to suggest it? Sorry I have so many questions but I am so thankful for your support and the kindness of

all the people on this website. Thank you for your time and please let me know what you think. Tammy

To: Breathe-Support Sent: Thu, November 26, 2009 8:19:13 AMSubject: Re: Newly Diagnosed very scared

TammyWelcome here even though wish you didn't need us. Where are you?We would also be interested in where you were diagnosed and by whom? Ifit was not a Center of Excellence or and ILD center I would stronglyrecommend a second opinion at one and more thorough diagnosis. I'mcurious as to what even led to the diagnosis and biopsy with your oxygensaturation so high. Most of us took much longer for anyone to believe wehad a problem.One of the reasons I especially mention the second opinion at a Centerwith Expertise is the rarity for you to have UIP so young and with noidentified cause. So I would want to be sure a second pathologistspecializing in the disease had seen the biopsy and that possibleunderlying causes from hypersensitivities to connective tissue diseaseshad been thoroughly evaluated.Now beyond diagnosis and good medical care, it sounds like you'refeeling pretty good.

Remember that. Don't dismiss the reality of whatmay happen in the future but don't live it either. Life with IPF can begood and learning to live and make the most of it is what this site isabout.At your age too, I'm sure you'll probably consider a future transplantso you have plenty of time to research and discuss and prepare towardit.>> Hello all as I sit here and write this I imagine everyone of you wrotesomething similiar to this when you were first diagnosis. I am a healthy35 yo mother of 4 beautiful children and was diagnosis last week withIPF. The lung biopsy came back today as UIP which as I understand is theworst kind to have. I am not sure what all this means

except that I amterrified and could use some help in understanding what to expect. Iwould love to hear from some of you and build new friendships withpeople who can relate to the fear I have. As of now my pulmonaryfunction test are the only thing that are abnormal. I sat 98-100% onroom air even with activity. I do get slightly short of breath withphysical activity but continue to go to the gym 5-6days a week and workout. I am also a nurse however my patient population is the neonates. Icare for sick or premature infants. THanks for listening and please helpme any way you feel appropriate even if it is just some words ofencouragment. May God Bless all of you and may he also grant me peaceand courage as I face this disease. Tammy >

November 26, 2009

Tammy

Seems like they are busy chasing something you already know. RA and

Reynauds are connective tissue diseases. RA can lead to fibrosis. Often

other connective tissue diseases may accompany them. Sounds like you

need a rheumatologist knowledgeable in the combinations and a

pulmonologist who is. But generally in this case the effort will be

concentrated on attacking the connective tissue diseases. I would have

hoped you would have been given a full battery of labs related to them.

National Jewish is excellent and I'd strongly recommend it. UCLA I don't

have the same knowledge of but it is a Center of Excellence. They are

all listed at ipfnet.org. They generally have particular doctors who are

most concentrated on combination of connective tissue with PF.

Definitely get a second opinion including a second review of the Biopsy

slides by a center of excellent pathologist. I share your lack of

confidence because I feel like the tail is wagging the dog in terms of

your diagnosis.

Depending on your insurance and its requirements determines what is

required to go to one of the Centers of Excellence. If your insurance

doesn't require a referral or you're on Medicare, you just pick up the

phone and call. Do make sure to talk about your connective tissue

diseases. It does make things quite different. The phone numbers and

coordinators are shown on the web site I mentioned above.

> >

> > Hello all as I sit here and write this I imagine everyone of you

wrote

> something similiar to this when you were first diagnosis. I am a

healthy

> 35 yo mother of 4 beautiful children and was diagnosis last week with

> IPF. The lung biopsy came back today as UIP which as I understand is

the

> worst kind to have. I am not sure what all this means except that I am

> terrified and could use some help in understanding what to expect. I

> would love to hear from some of you and build new friendships with

> people who can relate to the fear I have. As of now my pulmonary

> function test are the only thing that are abnormal. I sat 98-100% on

> room air even with activity. I do get slightly short of breath with

> physical activity but continue to go to the gym 5-6days a week and

work

> out. I am also a nurse however my patient population is the neonates.

I

> care for sick or premature infants. THanks for listening and please

help

> me any way you feel appropriate even if it is just some words of

> encouragment. May God Bless all of you and may he also grant me peace

> and courage as I face this disease. Tammy

> >

>

November 26, 2009

Bruce

thank you again i wish i could say I felt confident in the diagnosis but i just am not there yet. in addition to the knowledge that I have been given from all of you on here I have researched some on my own and i really dont have any of the symptoms that come along with this. i do experience some SOB with physical activity, but my sats never drop below 95%. I have a very strong family history of auto immune disorders so i want to rule that out. the doctors did no other labs with the exception of my biopsy which doesn't sound right. I know that i want the doctors here to be wrong but if they aren't I also want to know that I have sought out the best treatment possible. I am a mother to 4 of the most wonderful children in the world and want to get to see them grow up. If you have any other advice on what thinGS I should be doing please feel free to let me know what they are, i am very open minded to both conventional and unconventional

treatment. Thanks again for listening. Have a great night Tammy

To: Breathe-Support Sent: Thu, November 26, 2009 9:51:37 PMSubject: Re: Newly Diagnosed very scared

TammySeems like they are busy chasing something you already know. RA andReynauds are connective tissue diseases. RA can lead to fibrosis. Oftenother connective tissue diseases may accompany them. Sounds like youneed a rheumatologist knowledgeable in the combinations and apulmonologist who is. But generally in this case the effort will beconcentrated on attacking the connective tissue diseases. I would havehoped you would have been given a full battery of labs related to them.National Jewish is excellent and I'd strongly recommend it. UCLA I don'thave the same knowledge of but it is a Center of Excellence. They areall listed at ipfnet.org. They generally have particular doctors who aremost concentrated on combination of connective tissue with PF.Definitely get a second opinion including a second review of the Biopsyslides by a center of

excellent pathologist. I share your lack ofconfidence because I feel like the tail is wagging the dog in terms ofyour diagnosis.Depending on your insurance and its requirements determines what isrequired to go to one of the Centers of Excellence. If your insurancedoesn't require a referral or you're on Medicare, you just pick up thephone and call. Do make sure to talk about your connective tissuediseases. It does make things quite different. The phone numbers andcoordinators are shown on the web site I mentioned above.> >> > Hello all as I sit here and write this I imagine everyone of youwrote> something similiar to this when you were first diagnosis. I am ahealthy> 35 yo mother of 4 beautiful children and was diagnosis last week with> IPF. The lung biopsy came back today as UIP which as I understand isthe> worst kind to have. I am not sure what all this means except that I am> terrified and could use some help in understanding what to expect. I> would love to hear from some of you and build new friendships with> people who can relate to the fear I have. As of now my pulmonary> function test are the only thing that are abnormal. I sat 98-100% on> room air even with activity. I do get slightly short of breath with> physical activity but

continue to go to the gym 5-6days a week andwork> out. I am also a nurse however my patient population is the neonates.I> care for sick or premature infants. THanks for listening and pleasehelp> me any way you feel appropriate even if it is just some words of> encouragment. May God Bless all of you and may he also grant me peace> and courage as I face this disease. Tammy > >>

November 26, 2009

Tammy

You talk about your family history of autoimmune and the indication that

the inflammation looks like connective tissue. But the key is that you

personally have a history of autoimmune/connective tissue. Once you get

a good thorough complete diagnosis then a plan will fall into place. If

the underlying problem is autoimmune/connective tissue then it will be

simple enough to pursue the normal treatment protocols for those

diseases.

While the biopsy may well have been something you would have chosen, it

sure seemed to be rushed into by your doctors. Do not let those same

doctors rush you into a treatment plan before you have a diagnosis

you're comfortable with and all the facts you can gather. While no

" cures " there are very conventional treatments for connective tissue

diseases and they are effective for managing both the disease and any

secondary conditions. Often connective tissue diseases impact other

organs, including lungs, kidneys, liver, etc. Now can you have

connective tissue and UIP and no connection but just coincidence? Yes.

But just get to experts who can complete your diagnosis and deal with

your conditions appropriately.

> > >

> > > Hello all as I sit here and write this I imagine everyone of you

> wrote

> > something similiar to this when you were first diagnosis. I am a

> healthy

> > 35 yo mother of 4 beautiful children and was diagnosis last week

with

> > IPF. The lung biopsy came back today as UIP which as I understand is

> the

> > worst kind to have. I am not sure what all this means except that I

am

> > terrified and could use some help in understanding what to expect. I

> > would love to hear from some of you and build new friendships with

> > people who can relate to the fear I have. As of now my pulmonary

> > function test are the only thing that are abnormal. I sat 98-100% on

> > room air even with activity. I do get slightly short of breath with

> > physical activity but continue to go to the gym 5-6days a week and

> work

> > out. I am also a nurse however my patient population is the

neonates.

> I

> > care for sick or premature infants. THanks for listening and please

> help

> > me any way you feel appropriate even if it is just some words of

> > encouragment. May God Bless all of you and may he also grant me

peace

> > and courage as I face this disease. Tammy

> > >

> >

>

November 27, 2009

Tammy,If you go to UCLA. please do not get an appointment with Dr. Lynch. I call him Dr. Arrogant. He is an evidence based doctor, and does not take the patient and their variablities into consideration. He was my second MD at UCLA after my very wonderful first one went to Santa Barbara. KathySubject: Re: Newly Diagnosed very scaredTo: Breathe-Support Date: Thursday, November 26, 2009, 8:51 PM