Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 Peggy, I did quit the day I was diagnosed but Rich's mama says that's like closing the barn door after the cow done been hit by a tractor. I quit because I didn't want anything that might cause more damage. That was before they discovered the aspiration. Today 11 days after the surgery I wonder if it was worth it. I got the whole surgery or gradually deterioration of your lungs and death speech so I suppose I had little choice. The surgery didn't go well and I am not healing probably due to my auto immune diseases. The pain in my stomach where they did the fundolication gets worse by the day. All I can eat is yogurt like stuff and even that I have to make myself eat. No appetite, no energy, no nothing. I can't be the only one that has weeks like this, can I. I lean heavily on my Father at times like this but then I wonder if doctors are interfering with what he had planned for me. I have my pre-op on Thursday but so far we have made multiple trips to the er because of my kidneys and c-dif dehydration. I wonder to why my doctor gave me lasiks for my edema, did a blood test to determine it wasn't my heart but never followed up to find out why I am getting such severe edema. It is really like "ok, it's not her heart so we won't worry about it". I do not believe this severe edema and dreadful sweating are caused by nothing. I just want a doctor who cares more about me then about my co-pay. They are putting me back on oxycodone for pain so maybe tonight I will finally get some sleep. Every time I move in my sleep the pain brings me wide awake. I have always lived up to my name. I was the sunshine in everyone's day - through losing my husband, colon cancer, lupus, diabetes, all of it but right now I feel like enough is enough and I just don't want to live sick any more and I don't want Rich to have to do everything including working 12 hours a day just so we can scrape by. I take 11 prescription meds now. Can't someone please tell me when enough is enough and it's okay to quit fighting your own body day after day. I dream about 5 years ago and riding my bike 14 miles a day, going to the gym every day, working and keeping a spotless house, having dinner ready when my hard working husband gets home. Is this really all there is left? Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho From: Peggy Sent: Monday, June 22, 2009 12:43 PM To: Breathe-Support Subject: Re: Bruce Sunny, That worked.. I laughed when I saw the Japanese stuff.. Oh well, A few comments for you. # 1 Smoking does not cause IPF... It does not help but as to the cause it is very rare. Aspiration is indeed a cause along with one hundred and three other things.. #2 The only way you will ever quit smoking it to want it just for YOURSELF... I don't care what anyone says to you unless you are ready on your own you just won't do it. This is coming from a 40 year smoker that DID IT. Of course I used tons of patches and the gum and will power.. have never had that all these years and quit just for me, didn't tell anyone I was even doing it. God was my supporter. I prayed a lot. Take care of you and don't worry about saying something wrong, we ALL have from time to time and someone else catches it. So relax and breathe easy and deep.. Love and Prayers, Peggy IPF 2004, Florida Worry looks around, Sorry looks back, Faith looks up. Let's see if it works if I just reply to you and include my note to Bruce. Domo Arigato Bruce, I wish to apologize to you. When I saw your email I lashed out at you in a manner that is most unlike me. I would like to blame it on the surgery pain and morphine but to be honest it wasn't you I was lashing out at. For the past ten years my mother-in-law (and I do love her) has nagged me about smoking and believe that I have tried to quit so many times. When I was diagnosed with IPF and we told her; well I am not going to say she was gleeful but I got loads of "see I told you what smoking would do". Even after the pulmo and gi docs said it was from aspiration she didn't believe it. Maybe she is right and they can't be 100% sure but I don't think they would have done this awful surgery unless they were pretty confident it was going to at least slow my IPF. When I responded to the newbie I believe I was just crying out my own frustration at constantly being blamed for what is happening to my body. As I am sure you know, I have a VERY complicated medical history that involves auto immune diseases but nothing has shocked me as the IPF diagnoses. Anyway, I wanted you and everyone else to know that you were right to correct me. No one knows, unfortunately, what causes the scarring in our lungs. I wish they did then they could prescribe it and charge us more than anyone could afford to pay. There was a whole lot of wishful thinking in my post, a little internet fact and a whole lot of temper tantrum "leave me a lone I'm dying already" in it. To the newbie (I am sorry I can't remember who you were but my prayers are with you) I apologize for jumping in and venting my own frustrations and wishful thinking at your expense. This board has been a life line to me when I was so adrift I didn't even want to live. Listen to the ones who post often like Bruce, Sher, Joyce, and especially Beth. They have lived with this monster a long time and know more about it than I will learn in my lifetime. More than anything they are patient and listen to our questions (we newbies always have tons) and take the time to respond. For that and many other things they have my respect and gratitude. Again, sorry you got caught in my storm Bruce, Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho From: Peggy Sent: Monday, June 22, 2009 11:49 AM To: Breathe-Support Subject: Re: Bruce Sunny, I don't know how this happens but this is the second time I have seen it.. lol I didn't know you were Japanese.. 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Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009  Sunny... I have a big lump in my throat after reading this post... I'm so sorry you are experiencing what we all experience at one time or another. The time when we feel hopeless, helpless and just plain sick and tired of feeling sick and tired. Believe it or not, this too shall pass and we regain a bit of our energy, our hope and do what we can. Doing what we can does change and only you can determine if you're trying to do 'too much'. There is a song written about 'is this all there is....bring in the clowns'....darn, I can't remember it all. Don't beat yourself up Sunny for what you can't do. Do what you can and then feel good that you did what you could. Lecture over. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Bruce Sunny, I don't know how this happens but this is the second time I have seen it.. lol I didn't know you were Japanese.. Love and Prayers, Peggy IPF 2004, Florida Worry looks around, Sorry looks back, Faith looks up. <pastedGraphic.tiff> On Jun 22, 2009, at 2:28 PM, <rpickel1 (AT) msn (DOT) com> wrote:ਊℼ佄呃å™â…呈ä±å€ 䉕䥌âƒâ´¢â¼¯ã—⽃ä¯ä‘”ä äµ”âŒâ¸´ã„°â¼¯ä¹…â€¢æ ¢ç‘´ã©°â¼¯ç·â¹·ã·æ¼®æ²å¯â½’瑨æ±â¼´ç‘³æ¥²ç‘£æ®æ‘´ã¸¢ã°Šç‘¨æ±à¨¾æ ¼æ…¥ã¹¤ã°Šæ ¯æ…¥ã¹¤à¨Šà¨Šã°Šæ½¢ç¥¤çŒ 祴敬∽慢æ£ç‰§ç•¯æ‘®æŒæ±¯ç‰¯â€ºæ˜£æ™¦æ™¦ã¦ã¸¢à¨Šâ„¼â´âµ¾â©¼ç°ªç‰ç‘¥ç¥´ç‘ˆæ±ç‘“牡呴⩼簪ç¸â´à¨¾æ¼ç™©æ¤ 㵤礢牧⵰æ±çâ‰§çŒ ç¥´æ•¬âˆ½æ¥·ç‘¤ã©¨ã”¶ç€µã¸ç€ ç¯ç‘©æ½©ã©®æ•²æ…¬æ¥´æ•¶âˆ»à¨¾æ¼ç™©æ¤ 㵤礢牧⵰çâ‰§çŒ ç¥´æ•¬âˆ½æ¥·ç‘¤ã©¨ã 〷硰※æ…æ²æ¹©ã€ºâ€»æ…°æ‘¤æ¹©ã©§â€°ã”²ç¡°ã€ 〠※汦慯㩴敬瑦※⵺湩敤㩸㬱㸢㰊ⴡç¸ç°â¨ªå¼æ•²ç‘´ä¡¹æµ´ä•¬æ‘®ç±”⨪⵼⵾ã¸à¨Šâ€ †æ¼ç™©æ¤ 㵤礢牧⵰整瑸•ਾ††††††ℼâ´âµ¾â©¼ç°ªç‰ç‘¥ç¥´ç‘ˆæ±ç‘“牡籴⨪⵼⵾ã¸â€Šâ€ ††††㰠牢㰾牢ਾ†††ℼâ´âµ¾â©¼ç°ªç‰ç‘¥ç¥´ç‘ˆæ±æ¹…籤⨪⵼⵾ã¸â€Šâ€ †㰠㹰⼼㹰 ਊ††⼼楤㹶†ਊ††ℼâ´âµ¾â©¼ç°ªç‰ç‘¥ç¥´ç‘ˆæ±ç‘“牡籴⨪⵼⵾ã¸â€Šâ€ 㰠楤â¶æ¥·ç‘¤ãµ¨ã„¢â€¢ç‘³æ±¹ãµ¥æŒ¢æ±¯ç‰¯â€ºæ¡·ç‘©ã¥æŒ 敬牡›潢桴∻弾⹟ⱟ⹟彟㱟æ¯ç™©à¨¾â€Šâ€ †††† ਠ†† †㰠ⴡâ€ç‘“牡â´æ¡´â¥æ•³ç‘£æ½©â®æ¥·æ¡´ä´ ç¥æ…³æ•§ä¤ â®æ½´æ¥°â£â´à¨¾â€ †æ¼ç™©æ¤ 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Guest guest Posted August 9, 2009 Report Share Posted August 9, 2009 Bruce, I have tried and failed to find the parent company for Tracleer to learn about a modest cost for this drug for my neighbor. Some one gave me www.caringvoice.org, but that is strictly about voice, singing, etc. When I Google tracler I get mostly stuff about acne. My neighbor at 77 is no longer bothered about that. We will appreciate any advice you can give us. PS: Welcome home MB, Glad you had such a swell vacation. Jack79/IPF - UIP/dx06/05 Maine To: Breathe-Support Sent: Sunday, August 9, 2009 4:50:10 PMSubject: Re: Hi Dyane My dear even in a mobility chair, with the right shoes and bag, we would ALL look good on the nightly news. Especially if it meant we get to talk to Charlie Gibson! I have a secret crush on Charlie.Good luck anyway. S, Lubbock, TXNSIP w/PF 12/2006 et al> > > > > >> > > > > >> > > > > > How ya been?> > > > > > Sorry to read you have a breast cancer dx while I was> floating.> > > That> > > > > > sucks.> > > > > >> > > > > > S, Lubbock, TX> > > > > > NSIP w/PF 12/2006 et al> > > > > >> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2009 Report Share Posted August 9, 2009 Jack, I'm not Bruce but I just wanted to pop in here on two points. Tracleer is a treatment for pulmonary hypertension, it doesn't have anything to do with acne. There is an otc acne treatment called Triclear...maybe there was a misspelling when you googled? Caring Voice Coalition (www.caringvoice.org) is an amazing organization offering many types of assistance and education to people coping with things like IPF and PAH. They offer financial assitance, patient support programs and insurance education and counseling. I've been on the receiving end of help from these good people and can't say enough positive things. Their phone number is . If you or your neighbor give them a call there may be something they can suggest. Hope that helps! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sunday, August 9, 2009 4:58:03 PMSubject: Re: Re: BRUCE Bruce, I have tried and failed to find the parent company for Tracleer to learn about a modest cost for this drug for my neighbor. Some one gave me www.caringvoice. org, but that is strictly about voice, singing, etc. When I Google tracler I get mostly stuff about acne. My neighbor at 77 is no longer bothered about that. We will appreciate any advice you can give us. PS: Welcome home MB, Glad you had such a swell vacation. Jack79/IPF - UIP/dx06/05 Maine From: <lbsmith789@sbcgloba l.net>To: Breathe-Support@ yahoogroups. comSent: Sunday, August 9, 2009 4:50:10 PMSubject: Re: Hi Dyane My dear even in a mobility chair, with the right shoes and bag, we would ALL look good on the nightly news. Especially if it meant we get to talk to Charlie Gibson! I have a secret crush on Charlie.Good luck anyway. S, Lubbock, TXNSIP w/PF 12/2006 et al> > > > > >> > > > > >> > > > > > How ya been?> > > > > > Sorry to read you have a breast cancer dx while I was> floating.> > > That> > > > > > sucks.> > > > > >> > > > > > S, Lubbock, TX> > > > > > NSIP w/PF 12/2006 et al> > > > > >> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2009 Report Share Posted August 9, 2009 Tracleer's manufacturer is Actelion Pharmaceuticals US, Inc. Here is a link to their patient assistance program called Tracleer Access. http://www.patientassistance.com/profile/actelionpharmaceuticals-329/ Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sunday, August 9, 2009 4:58:03 PMSubject: Re: Re: BRUCE Bruce, I have tried and failed to find the parent company for Tracleer to learn about a modest cost for this drug for my neighbor. Some one gave me www.caringvoice. org, but that is strictly about voice, singing, etc. When I Google tracler I get mostly stuff about acne. My neighbor at 77 is no longer bothered about that. We will appreciate any advice you can give us. PS: Welcome home MB, Glad you had such a swell vacation. Jack79/IPF - UIP/dx06/05 Maine From: <lbsmith789@sbcgloba l.net>To: Breathe-Support@ yahoogroups. comSent: Sunday, August 9, 2009 4:50:10 PMSubject: Re: Hi Dyane My dear even in a mobility chair, with the right shoes and bag, we would ALL look good on the nightly news. Especially if it meant we get to talk to Charlie Gibson! I have a secret crush on Charlie.Good luck anyway. S, Lubbock, TXNSIP w/PF 12/2006 et al> > > > > >> > > > > >> > > > > > How ya been?> > > > > > Sorry to read you have a breast cancer dx while I was> floating.> > > That> > > > > > sucks.> > > > > >> > > > > > S, Lubbock, TX> > > > > > NSIP w/PF 12/2006 et al> > > > > >> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2009 Report Share Posted August 9, 2009 Jack/MBHere's Actelion's patient assistance program. I would suspect, although I don't know, a pretty good program as I'm sure lots of users of Tracleer need help. Patient Assistance Programs Patients who are uninsured or who need help paying for their medication may be eligible to receive financial assistance for Tracleer. Call 1-866-ACTELION(1-) for details.> > > > > > >> > > > > > >> > > > > > > How ya been?> > > > > > > Sorry to read you have a breast cancer dx while I was> > floating.> > > > That> > > > > > > sucks.> > > > > > >> > > > > > > S, Lubbock, TX> > > > > > > NSIP w/PF 12/2006 et al> > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2009 Report Share Posted August 9, 2009 MB Ah, you're back and faster than me....lol How tired are you from the traveling as well as the drive to and from Greensboro? I'll bet the salt air and gentle breeze off the ocean sure felt good. > > > > > > > > > > > > > > > > > > > > > How ya been? > > > > > > > Sorry to read you have a breast cancer dx while I was > > floating. > > > > That > > > > > > > sucks. > > > > > > > > > > > > > > S, Lubbock, TX > > > > > > > NSIP w/PF 12/2006 et al > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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