Dorothy

[Guest guest]

Dorothy,

What a small world....I lived in New City most of my life which is about 6 miles north of Pearl River. Also my brother graduated from SUNY Stony Brook. It's funny isn't it how easy it is to find connections sometimes?

I don't blame you at all for wanting to stick with Duke and Dr. Noble. He is the kind of individual that inspires a lot of confidence. He is the division chief. In your position I doubt I'd be anxious to make a lot of changes either, especially when you are getting close to making the transplant decision. Who needs the extra stress?

I have nothing at all scheduled on the 20th so why don't we just leave it loose and you can call me on my cell () if you are free and not too exhausted to get together. I would really love to meet you.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Monday, August 10, 2009 4:02:06 PMSubject: RE: Re: results of VATS?????

Beth,

I was born in Manhattan grew up in Queens (Astoria). My grandparents lived in Manhattan near Gramacy Park when it was not as affluent as it is today.

After we married we lived in Bellerose (Glen Oaks) and then moved to Stony Brook on the north shore from 1970 until Atlanta in 1992.

Ironically my cousins have both lived in Pearl River, Rockland County since the early 70s. I visit up there about

once a year. We spent a few days at the Swim Club in Pearl River last summer with my nieces and my daughter & grand daughter from Boston.

I know the travel to Duke seems a bit much. It was impossible to find ILD specialist here in 2005. I went to Mass General for 18 mos. after dx was on Azathioprine but had a bad allergic reaction then was on Cytoxan tabs for over a year but fibrosis continued to spread. Dr. had worked with Dr. Noble at Yale so I a great referral to Dr. Noble and I bless the day he accepted me as a patient. I was on Cytoxan infusions at Duke monthly for six months and then quarterly for a year and actually felt really good and PFTs improved, etc. They had to stop the treatments for fear I had way too much Cytoxan. Now on Cellcept 3,000 mg a day with no improvement. Fortunately I have no reaction to it and no digestive problems either. This disease is progressing quite a bit for me this past year and

I think he is ready for a transplant eval. if I agree. I am just too scared to make a move somewhere else - I know Duke is inconvenient for me and my family

and a big expense to be there for several months but I just can't imagine switching now. I have such faith and confidence in Dr. Noble and Duke.

Depending on the outcome of the eval. I may change my mind. If I am not a candidate and there is nothing else to do but suck oxygen then I might just stay in Atlanta.

I arrive around 6:30 PM on Wed. night Aug. 19. I have pulmonary function and walk at 8:30 AM on the 20th and 11:15 AM appointment with Dr. Noble. I will see what he suggests then. If he doesn't have any surprises for me, I should be free for lunch by 12:30 or so if that is a good day for you.

If not I have another appointment in October - we could plan to meet then.

Thanks for the conversation, even though you felt you were a misplaced New Yorker, I love talking to people who can relate to NY landmarks, etc.

Dorothy Reinecke-Fayettevil le, GA

66 - VATS 7/05-UIP 7/05

Live Simply, Love Generously, Care Deeply, Speak Kindly. Leave the rest to God.

From: Breathe-Support@ yahoogroups. com [mailto:Breathe- Support@yahoogro ups.com] On Behalf Of BethSent: Monday, August 10, 2009 3:15 PMTo: Breathe-Support@ yahoogroups. comSubject: Re: Re: results of VATS?????

Dorothy,

Yes I'm a former New Yorker. Where did you live in NY? I was born in the Bronx and lived most of my life in the northern suburbs, up in Rockland County, just west of the Hudson River. I also lived on Cape Cod in Massachusetts for 8 years when my son was young but when my marriage ended I moved back to NY so that my son and I could be near family.

My sister has lived down here in NC for about 15 years now. She did her residency and then her fellowship at Duke. She is a perinatologist (high risk obstetrics) and has been at Duke ever since. I had wanted to move down here for a long time. I've always felt like a 'misassigned southerner' living in NY. When I was diagnosed with the fibrosis she started lobbying big time to get be down here and after my first post diagnosis NY winter I was ready to come also.

I've been down here since November of 2007 and I know it was the right thing for me. I love the hot summers and the short milder winters. It's easier to make ends meet down here and I don't miss the overall stress levels living in the NY metro area. It's just not me. As much as I liked Columbia and was happy with the treatment, it was still a pain to have to make that trip into Manhattan to see the doctor. I live literally 10 minutes from the facilities at Duke. It could not be more convenient.

That's quite a trip you make to get here though. I mean I love Duke but for me that trip would be a deal breaker unless I had no other options. I've heard the program at Emory is going through some changes but it might be worth investigating for you at some point.

Whatever you decide, please let me know the next time you're going to be up here so that we can have lunch or something. That would be fun!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Dorothy Reinecke <atlantadorothy@ att.net>To: Breathe-Support@ yahoogroups. comSent: Monday, August 10, 2009 2:21:31 PMSubject: RE: Re: results of VATS?????

Hi Beth,

I notice that you were treated at Columbia. Did you live in New York before Durham? Did you move to go to Duke?

I travel to Duke because it seems the best available within reasonable travel distance. It is a seven hour drive or a

one hour plane ride and I can usually get a ticket between $98-120. Emory is in Atlanta but they did not

have specialists in ILD when I was diagnosed in 2005 and now I just can't imagine not going to Duke.

They are talking about scheduling a transplant evaluation in the near future at Duke. Did you go through the evaluation

at Duke?

New York was my home until we moved to Atlanta in 1992. Actually I still feel like NY is home and I live in Atlanta.

Moving and relocating to another state at 50 did not work well for me at all.

Dorothy Reinecke-Fayettevil le, GA

VATS 7/05-UIP 7/05

Live Simply, Love Generously, Care Deeply, Speak Kindly. Leave the rest to God.

From: Breathe-Support@ yahoogroups. com [mailto:Breathe- Support@yahoogro ups.com] On Behalf Of BethSent: Monday, August 10, 2009 1:59 PMTo: Breathe-Support@ yahoogroups. comSubject: Re: Re: results of VATS?????

nne,

It sounds like you already have a Helios unit or some type of liquid device. If you filled it on Friday, I would not expect for there to be much, if anything left in it on Monday morning. In my limited experience with liquid O2 you need to fill the device within a few hours of when you are going to use it. There is evaporation and leakage that takes place and after a day or so the unit, if unused will be empty. Again in my limited experience with liquid, it's best to fill your device within a couple of hours of having to use it.

I use compressed O2 in tanks, not liquid. It's what I've been on pretty much the whole time since my diagnosis over 3 years ago. I tried liquid very briefly a year or so ago and decided it wasn't for me. The problem of leakage and evaporation was one of the drawbacks that drove me back to tanks. It's all about figuring out what will work best for you and your own lifestyle.

I wish you the very best with your evaluation. Be assured that the folks at Columbia are very good at what they do. I was very happy with the treatment I received there.

Keep us posted!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: teddyspenguins <teddyspenguins@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Monday, August 10, 2009 12:40:39 PMSubject: Re: results of VATS?????

Beth,First of all, welcome back- it sounds like your vacation was perfect- except for the oxygen tanks! Now about transplant issue- I really think Columbia is just going to evaluate me and then I guess if I qualify they may talk to me about transplant. My pulmo-dude brought the subject up because that really is the only way to achieve normalcy. The drugs, if they work at all, just slow the progression. I guess with my mish-mosh of a diagnosis, he feels a drug option may not be for me. Even the surgeon for VATS was not encouraging about a drug option. In his words, "the drugs wreak havoc on your body." At the pre-VATS appointment he said my pfts were "bad" and he couldn't believe I wasn't on O2 already. Who knows- I'll just wait and see what happens at Columbia.I have a question for you about portable O2. I have a unit about 12 lbs. that was delivered on Friday (not IRON) which I filled while the delivery guy was there, but when I grabbed

it this morning there was no O2 in it. My plan had been to fill it night before I was going to use it-I know I must have waited too long since I didn't use it Saturday or Sunday. But if I fill it tonight and then use it when I go out for my lunch hour tomorrow, will the O2 still be there? I have an appointment to get Helios and meet with Respiratory Tech on Wednesday- not sure what Helios is though, but I guess I'll find out. SO many new things to learn!- nne > >> > >> >> > > >> >> > > > >> >> > > > >> >> > > > > Hi everybody,> >> > > > > Well I saw my pulmo-dude last week and the surgeon yesterday and my> >> > > > > diagnosis is not specifically one thing or another. I'm going to > >> > write it> >>

> > > > all here and maybe someone else had a similar result.> >> > > > > Final Pathologic Diagnosis- Cellular Interstitial Inflammation with> >> > > > > numerous fibroblastic foci and mild interstitial fibrosis.> >> > > > > Biopsies show a cellular mixed inflammatory infiltrate of > >> > lymphocytes and> >> > > > > histiocytes in the alveolar septae. Scattered throughout the > >> > alveoli are> >> > > > > several small fibroblastic foci in the interstitium. There is mild> >> > > > > interstitial fibrosis thickening of the alveolae septae. No dense> >> > > > > honeycombing. Findings are consistant with a cellular fibrosing > >> > interstitial> >> > > > > pneumonitis. Differential diagnosis is a

mixed NSIP pattern and UIP.> >> > > > > Presence of fibroblastic foci favors UIP but the dense fibrosing > >> > associated> >> > > > > with UIP is not observed in the samples. A similar histologic > >> > picture may be> >> > > > > observed in collagen vascular disease, pneumoconoisis, and > >> > hypersensitivity> >> > > > > pneumonitis. Suggest correlation with clinical and radiologic > >> > findings.HUH?> >> > > > > This is not how an episode of HOUSE MD ends! Anyway I am being > >> > referred by> >> > > > > my pulmo-dude to Columbia Presbyterian Medical Center-NYC which > >> > has an> >> > > > > interstitial lung disease department to be evaluated. I am back > >> > at

work and> >> > > > > so happy to be out of the house. My company is giving me a > >> > parking spot> >> > > > > closest to the lobby and I also got from Motor Vehicles a > >> > handicapped> >> > > > > placard since I am on O2 for exertion. - nne> >> > > > >> >> > > > >> >> > > > >> >> > > >> >> > > >> >> > > >> >> > >> >> > > > --> >> > > > Dyane L. Billings> >> > > > Senior Staff Accountant> >> > > > Ball & McGraw PC> >> > > >> >> > >> >> >> >> >> >>> >>

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