Guest guest Posted June 12, 2009 Report Share Posted June 12, 2009 Peggy E pf or ipf is a form of ild -- ild is the umbrella term for all sorts of interstitial lung diseases pf is pulmonary fibrosis -- a specific kind of ild there is a whole new alphabet soup to learn with this disease you will see all sorts of initials after every's names by the way, i am curious as to what kind of health care professional you are also, i ignore grammar and spelling when doing emails plus there are lots of typos in my posts Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: Peggy ETo: Breathe-Support Date: Friday, June 12, 2009, 5:44 PM Hi Beth,Right, right right. Yes, I did know that and do understand the distinctions. I was glad you did say that it can be a ramification of longer term disease progress however. That was what was confusing me with Dr. Raghu's explanation. I kept saying, I don't have PHT and he would say,"No, not now but you could still get it" or that I had it but it wasn't diagnosable without the heart cath test. Now, I do understand the disease progression and how PHT can be manifested through the process. Fortunately I did work in health care and have taken physiology and anatomy but it took awhile for me to get my brain around this. I don't believe there is a difference between ILD and PF however. Dr. Raghu told me they are interchangeable but he told me I have ILD and the clinic I go to is a specialized clinic for interstitial lung diseases so I tend to use ILD rather than PF. Why couldn't it have been something simple like 'acne' that everyone understands? Ha haBest sign off - the group thing should be coming down soon.Thanks again - I truly did understand and appreciate your explanation of this and am glad for all the suggestions and advice you give me.Peggy E From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Re: Peggy ETo: Breathe-Support@ yahoogroups. comDate: Thursday, June 11, 2009, 7:51 AM Peggy, Just a brief word about pulmonary hypertension. You seemed to refer to it as an ILD and I just wanted to make sure you know that it is not. Pulmonary hypertension is actually a complication of most ILD's and yes many of us will deal with PH eventually. It is not necessarily inevitable or it can sometimes be delayed to the very very late stages of progression. The key, I've always been told is maintaining our oxygen levels above 90 at all times. This reduces the strain on our hearts and pulmonary arteries. This all underscores the importance of using oxygen if we need it. There is no point in using it if it's not necessary but if you do need it using it will prolong your life and keep you more active and healthier. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: artquilterpeg <artquilterpeg@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, June 11, 2009 1:40:55 AMSubject: Re: Peggy E Hi Peggy C,I feel guilty - you should just be Peggy! It sounds like your disease was pretty advanced when you got diagnosed since you got on O2 right away. I'm with you about the biopsy - wouldn't really change anything except the doctor would know more. I made the exact same point with him that your daughter made for you. He was pretty speechless. He thinks I read too much but I believe that if I understand the whole disease better maybe I can find a clue or something that I hadn't thought was important and bring it to his attention. The whole GERD thing was almost an after thought when I saw him and I am hoping and 1/2 believing that it might be the key to my situation. Once he started treating that my symptoms dramatically improved. I was hoping he was going to take the whole diagnosis away but he wouldn't do that! The denial was wonderful though - got me through last year when we moved twice and bought a mess of a house that needed to be fixed. :)Did they ever tell you which ILD you have exactly? I know there is sarcadosis, pulmonary hypertension (which seems to me we all will get eventually from the declining lung capacity)and others. At this point he is grouping me in the idiopathic ILD. Bend my ear all you want. I am all ears as I am trying to learn as fast and as thoroughly as I can to prepare myself for this journey. Thanks for giving me hope that my life can be managed with humility and assistance but not by living in a wheel chair or some such thing. :)Cheers,Peggy (wife, mother, quilter, tennis player, ILD 2007, 53 years old) I want to be more than a diagnosis and age! > >> >> >> > Hi Everyone. I was diagnosed with ILD a year ago but basically> > thought the doctor was wrong so I stayed in denial until recently. I> > might still be in denial on some level. I am seeing a great> > pulmonologist at University of Washington in Seattle who is> > researching GERD and ILD. I had a series of unusual events that> > occurred that led him to think my ILD might be exacerbated by GERD or> > maybe caused? He won't be specific. I get the impression that they> > don't really know if GERD can cause ILD or not. So, this week I am> > undergoing a host of tests for my lungs, heart and GERD. For the most> > part I am doing really well and the only medication I am on is> > omraprazole for the GERD and my hormone replacements. I am able to> > play tennis but if I run for a few balls in a row my heart rate jumps> > up really high. It comes back down again quickly so I have decided> > for now to only play with people who have an understanding of how> > important it is for me to take my time between points even though> > that is breaking the rules of tennis. I am suspecting that I should> > probably switch to another form of exercise that is less 'fast> > start'. Every thing I read about this disease is pretty depressing.> > I'd love to talk to someone else out there who is doing well who and> > is stable. I wonder how long I can stay stable and also if anyone has> > had any success getting their ILD arrested in development by managing> > their GERD.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 i do know that at least one of my physicians at Penn has participated in international meetings or conferences regarding interstitial lung diseases Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Peggy ETo: Breathe-Support Date: Saturday, June 20, 2009, 9:17 PM Hi Beth,Yes, research is very important I totally agree, but wouldn't it be nice if it were being coordinated internationally so the results could be shared? Maybe on some levels there is some sharing of ideas, research conducted etc. I also wish there was more 'public awareness' of these diseases. They've done so much with cancer and maybe it was due to more public awareness through fund raising etc. I am going to go to the local support group here and maybe I can volunteer to do something about the awareness of it since I am doing pretty well. Where are you going now? I agree with you about the planning the trips - I should plan a trip to Africa because that would be where I would go if I could go anywhere in the world. I have always been enamored with the wildlife there. I recently bought some fabric batiked by a group of women in Africa and it is so fun. I think I'll make it into a purse. Peggy E. From: pikpobedy <pikpobedy (AT) yahoo (DOT) com>Subject: Where are the best IPF and ILD centers?To: Breathe-Support@ yahoogroups. comDate: Friday, June 19, 2009, 8:49 PM I have IPF. I`d like to visit a center specialized in this.I`m located in Montreal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2009 Report Share Posted June 29, 2009 Peggy, I'm glad to hear that you are doing well and I agree that sometimes things come together to get us to the places we need to be and the people we need to be in touch with and there is no clear explanation as to how it happened. I know someone that calls it "God-incidence" instead of co-incidence. I'm not in the least afraid of flying. Prior to my diagnosis I flew on business a several times a year. Since my diagnosis I have not had the necessity of flying and I will admit I'm somewhat reluctant to consider a trip that requires it. I know how my body reacts to altitude and how much more O2 I need when I am visiting my son who lives at about 3200 feet above sea level. Commercial aircraft are pressurized to 8000 feet above sea level. That fact by itself gives me pause. I guess I'm just not anxious to experiment. Should some fabulous opportunity present itself I would probably change my tune but the combination of my O2 needs, limited funds and the fact that my family and most of my friends (with the exception of alot of you people) are on the east coast keep me traveling by car! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sunday, June 28, 2009 11:01:58 PMSubject: Re: Peggy E Hi Beth,Well, I am not doing too badly. For some reason I seemed to have been diagnosed when most people wouldn't have. Maybe I caught something and that got me in to N.J.. Maybe I was in the right place and the right time. I'm thinking I moved to Seattle area just so I could have Dr. Raghu for my doctor as other reasons don't seem to make any sense. In any case I will do what I can to get more awareness of the disease as I seem to have an innate ability (no real reason just has happened for things in the past). Maybe I can talk to a former client (who is also a trust fund kid who does documentaries) , into doing a documentary on this disease and it's victims and providers etc. It does seem like something that if I were given only a couple years to go, wouldn't bother to do. Are you afraid of planes or are you just in need of so much O2 that it seems impossible? Altitude? Sorry I haven't been on-line in awhile.. I was Shop Hopping with my quilting friends. I do agree that there is some perspective that comes with this diagnosis and my attitude now is to enjoy my life each and every day and pray that I have a lot of them but if not the ones that I do have will be high quality. Peggy From: pikpobedy <pikpobedy (AT) yahoo (DOT) com>Subject: Where are the best IPF and ILD centers?To: Breathe-Support@ yahoogroups. comDate: Friday, June 19, 2009, 8:49 PM I have IPF. I`d like to visit a center specialized in this.I`m located in Montreal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2009 Report Share Posted July 8, 2009 Hello Peggy E Yes I do love it here on the Island. My daughter and grandkids came up on the 4th and we were down on Deception Pass Beach walking around 2pm the kids were swimming in the lake. I wish I would have known you were here I would have invited you to city beach park for a hot dog, camp chair and to watch the fireworks. Maybe next time. Take care Walt on Whidbey IPF,Nsip.Uip. 06 Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.†Subject: Re: My RamblingsTo: Breathe-Support Date: Tuesday, July 7, 2009, 2:24 PM Hi Walt,I was in your neck of the woods on the 4th. My husband and I took our 2 Kerry Blue terriers to Deception Pass Beach. It was a little crowded with the holiday and all but we did the little 1.2 mile walk and saw a bald eagle flying then perched at the top of a tall pine tree. In my life growing up I never thought I'd see a bald eagle in the wild and I was so excited to see the majesty of that bird in flight and standing tall looking out over the water. It was worth the drive and time just for that alone. I think the setting is magical and look forward to another trip to Whidby. You are very lucky to live in such an enchanted place.Peggy E.>> I was thinking that: Life at 6 years old was so much simpler, colors were brighter. Days were longer, you sat at the table with family for dinner, People were nicer, and you believed in magic just to name a few. Then I grew up got a job had a family and worked and worked and worked I did not have time anymore my life was full. > Then I got my DX in 06 and after I realized (come to terms) that I was indeed “sick†I started taking stock of my life and what I thought were all the wonderful things that made my life so full. WOW!! Second to my DX what an eye opener.> I have said before that I have “lived†more in the last two years then I have in the last twenty. Awhile back there were some posts about life after DX (or with PF) I loved reading them. We all have doc appointments and other issues that we share and learn how to try and tame this monster but equally as important (to me anyway) is reading about vacations, party’s, family and friends. On the 4th we had a BBQ and I was laying in the park with my four year old granddaughter she excitedly pointed to a cloud and said “look a duck†it took me a minute but I saw it!> An old friend of ours used to say “ I Love you this day†I think I get it.> I never want to go a day without a smile or a laugh.> Walt on Whidbey IPF,Nsip.Uip. 06 > > > > Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.â€> Quote Link to comment Share on other sites More sharing options...
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