Tammy

[Guest guest]

Tammy,

Now that my head has semi-cleared from the Thanksgiving insanity in my family, I'd like to put my 2 cents worth in here also.

You mentioned possibly going to Denver for another opinion. GO! We've had several members over the last few months who've traveled to National Jewish for evaluations and ALL of them have come away impressed. While I'm certain your doctors have done their level best for you, the problem is they don't know what they don't know. ILD is fairly rare. The average community based pulmo doesn't see that much of it compared to things like emphysema and COPD. The field is changing rapidly and a trip to a university medical center with ILD specialists can only help you in the long run. Given your age, your personal and family history of auto-immune disorders, the fact that you have 4 young children etc. All of this screams for expert consults. Los Angeles is another valid choice, I'm only biased because we've had so many folks recently so happy with National Jewish in Denver.

Also I understand the doctors are anxious to get started treating you. My suggestion would be to resist that until you can get into see the specialists. Treatment with steroids may indeed be the best course of action however once you are on them they will skew test results for a long time to come making sorting out what's going on with you more difficult.

When I was diagnosed in 2006 I was treated with very high doses of solumedrol in the hospital and went home on 100mg of prednisone. I've no regrets about that. My disease was advanced and the treatment saved my life and then stablized me. It did however mask the signs of my dermatomyositis (connective tissue disease) so that I did not get an accurate diagnosis of that for over two and a half years.

Because you are not currently severely ill you have the luxury of pursuing a complete accurate picture of what's going on with you. Go to Denver, or LA or come here to Durham and go to Duke or Chicago to University of Chicago, take all your existing test results, your biopsy slides and gather all the information you can. I promise the effort will serve you well for years to come and will help you continue to be a wife and mom to your family.

I do understand how difficult it is not to panic. Been there, done that and have lived to talk about it. Your life is not over by a long shot. Be kind to yourself, get the rest you need (easier said than done with 4 little ones I know), eat well, exercise etc etc. Be very patient with yourself.

If there's anything I can to help please just give a shout!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thu, November 26, 2009 11:21:04 PMSubject: Re: Re: Newly Diagnosed very scared

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

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: 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 >