re Patti

[Guest guest]

Patti,

I, too, am possibly a victim of drug induced PF with the suspected culprit being nitrofurontoin or Macrobid. I got my DX of pf in June of 09 but my doctors here didn't say anything about the drug. I had lookedup PF on the internet and immediately stopped taking it. When I went to NJH in Aug, they too consider it to be a likely cause. However, only time will tell if it is a primary or secondary cause. I am interested in your disagnosis and your future health. I do not take 02 or pred. I have benefitted greatly from some breathing tapes that elevate my sats.

I am going on a cruise this Sat and will not return until 1/05/10 but hope to have more dialogue with you upon my return. My last check up showed some lung improvement since June.

That having been said, NJH said that this was the likely cause, but they would not predict what the prgress of the ILD would be.

Keep pursuing the cause of this. It really does matter. My best wishes for a Merry Xmas and Happy New Year

Bettye Kline Vicksburg, MS dx 06/09

To: Breathe-Support Sent: Thu, December 17, 2009 11:13:05 AMSubject: Re Patti

Good Morning Friends,

Well I spent 5 1/2 hours at the University of Chicago yesterday. Yes, they were running way behind schedule but didn't rush at all when they finally got to me. They were not at all upset that I brought my husband and two daughters with me. They immediately brought in more chairs.

I got both encouraging news and some not so much!

I am so glad I decided to go to a teaching hospital because Dr. Strek is insistent that she is not yet willing to throw in the towel and commit to a diagnosis of Idiopathic Pulmonary Fibrosis. Yes, all my scans show I do have PF and my PFT stats are dropping but the 22 tubes of blood they took were all negative, so no auto-immune problems. I did find out something very interesting. Throughout my entire adult life I have always had a lot of bladder infections, and I was always treated with a prescription called Macodantin or Macrobid (generic name Nitrofurin). Well this is a dangerous drug and can cause PF. She wants me to go back in my history as far I can find records and try to find out how often I took this medication. I actually just had a bladder infection and had taken this medication just a week ago. Can you believe that!! Needless to say, she said never ever

take this medication again. I am to return in Feb and repeat the PFT's and see if the scores have gone up or remained the same. If they have gone down again as they have in the last two years and even the past 2 months, then she suggests the VATS biopsy at U of Chicago. She will have to look further as I am still basically asymptomatic yet all my scores are really very low. My diffuse score was 34. She said my heart must be very strong as I do not yet require oxygen nor do I have much trouble being out of breath.

I do still have PF but I left not yet being prescribed oxygen or Prednisone so I thank the dear Lord for that blessing.

Patti, 59, Indianapolis, IPF 2007

[Guest guest]

Sher,

Happy Holidays to you too and yes I am glad I did go forth and seek another opinion at a teaching hospital. While I still may end up with a diagnosis of IPF at least I will know I have done whatever I could to get an accurate evaluation.

Patti, Indianapolis, IPF 2007

[Guest guest]

But how do you get an appointment with Dr. Ragu? He is so busy? this is my experience from yesterday:

I feel so disgusted and all I have been doing in laying in bed. Yesterday was my 6-7 week appointment with my pulmonologist.

My questions went un-answered. My ODLC is less than half as a healthy person my saturations stay up but so does my heart rate up to 180. Then I get a syncope. I was just qualified for oxygen which was an incredible help finally I could do something again. But he wants another 6 minute walk test. This will show again that my sats show normal but does not show anything about my fatigue exhaustion and so on even though all he has to do is sign a paper that he beliefs I need oxygen. My loop recorder just showed I had supra ventricular tachycardia. He will not answer my questions. Now wants to put me on high doses of AZA because prednisone does not work. Besides that it makes me basically crazy!! He does not have a nurse that I can ask questions to this morning and canceled my appointment then my

partner made me make it again for later in January.

I finally figured out he is a cancer pulmonologist with interest COPD on his bio card at the hospital. At once his website says he is also interested in parenthesis this showed on his website (including pulmonary fibrosis and sarcoidosis).

The surgeons when he gave my biopsy report said make sure you make use of this. I know it is the one illness you did not want but it is a diagnosis. But my pulmologist keeps giving different once all within the pulmonary fibrosis.

I asked him what do I say I have he gave me a paper with my pills. That is not even up to date. Yesterday exhausted me I have been in bed all day even with oxygen I have hard time breathing and keep waking up. All my muscles hurt; my chest is pounding and has a pressure. Like ILD has….I feel like giving up but know I cannot do this.

If I take my oxygen off I start coughing and coughing like I always did when I was not on oxygen…. Medicaid in Washington (state) does not pay for cough syrups that do not help tessalon pearls which help very much or cough syrups with codeine works but they do not pay for this either and I do not like them very much.

The one good thing from the biopsy I finally qualified for oxygen and now he is taken it away? He knows my heart does the work for three if I do not have oxygen. Lincare is trying to explain it…… but I want a real diagnosis not something he changes back and forth between NSIP fibrosis or NSIP cellular or plain IP does not want to look into what causes the NSIP. Actually medscape articles say this is the first thing you do when diagnosed with NSIP and many other sites. So did my doctor in pulmonologist in Bellingham already. I have to go to bed again my arms hurt….. And I am so exhausted……

I guess my cardiologist in Bellingham was right what are you going to do with the outcome?(this is why he did not want to take me off the plavix) it seems like nothing right now……..

Erna

1992 bird fanciers syndrome

CAD & MI 2004

ILD 2008 NSIP 2009

Washington State

Subject: Re: Re PattiTo: Breathe-Support Date: Thursday, December 17, 2009, 1:04 PM

We are so lucky to be near a teaching hospital. There is one right here in Portland OR, about 15 miles from me but they are out of network for my ins.

I am changing from Blue Cross Blue Shield, Med Advantage to Health Net this year and THEY do cover OHSU (Oregon Health Sciences University). However, I think I will stay with Dr Raghu in Seattle now. A 3 hr. drive is worth it to me now.

From: Patti

Sent: Thursday, December 17, 2009 11:46 AM

To: Breathe-Support@ yahoogroups. com

Subject: Re: Re Patti

Sher,

Happy Holidays to you too and yes I am glad I did go forth and seek another opinion at a teaching hospital. While I still may end up with a diagnosis of IPF at least I will know I have done whatever I could to get an accurate evaluation.

Patti, Indianapolis, IPF 2007

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[Guest guest]

.......Thank you so much and Happy Holidays to you too.

Everyone......I did forget to mention a few things I learned at the University of Chicago on Weds. Between my two daughters and my husband I think we asked every question we could think of.

Dr. Strek is not fond of running a humidifier of any type...she says anything that involves water has a chance of contamination.

She also said no more Vicks (considered an inhalant) under my nose which I did almost nightly at bedtime.......who would of thought!

So it's been two nights and it is taking some getting used to!!

Patti IPF 2007 Indianapolis