Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 Hi Sher! I asked my new doc what caused the PAH and she said Prednisone is a contributor....we all know how we love pred! I go in next Wed to the cardiologist who'll do that thing front your leg to the right heart to determine which med I should take and the extent of damage. The high # for the hypertension was 43 - I think that is pretty high I also take 02 with my CPAP at night now. Yes, I was doing better...but now I'm not so good. One of the symptoms of the PAH is chest pain...so there! Dr. Raghu would just look at me when I told him ab out the pain on exertion...then my last visit we did an ekg - which showed nothing wrong. My new doc is very thorough and is kind. I am wondering about others with the PAH, and how you are doing - etc. Thanks, Joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2009 Report Share Posted June 15, 2009 Thank you. It's good to know about it. I don't think I have it but I do have four stents in my heart.Beverley Joy, 71, IPF 1-09, Sjogren's, Fibromyalgia, diabetes, Idaho From: joynoel3208 <joynoel3208@ yahoo.com>Subject: PAH and 02To: Breathe-Support@ yahoogroups. comDate: Sunday, June 14, 2009, 4:19 PM Hi Sher!I asked my new doc what caused the PAH and she said Prednisone is a contributor. ...we all know how we love pred! I go in next Wed to the cardiologist who'll do that thing front your leg to the right heart to determine which med I should take and the extent of damage. The high # for the hypertension was 43 - I think that is pretty highI also take 02 with my CPAP at night now. Yes, I was doing better...but now I'm not so good. One of the symptoms of the PAH is chest pain...so there! Dr. Raghu would just look at me when I told him ab out the pain on exertion...then my last visit we did an ekg - which showed nothing wrong. My new doc is very thorough and is kind. I am wondering about others with the PAH, and how you are doing - etc.Thanks, Joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2009 Report Share Posted June 15, 2009 Do you know the name of the med he has been promoting? Is it Imurin? I also take that. Dr R took me off oxygen about a year ago. Now I'm on it again, and more so than before. What is the normal upper # for the arterial? Thank you...Joy > > > > Hi Sher! > > > > I asked my new doc what caused the PAH and she said Prednisone is a > contributor....we all know how we love pred! I go in next Wed to the > cardiologist who'll do that thing front your leg to the right heart to > determine which med I should take and the extent of damage. The high # > for the hypertension was 43 - I think that is pretty high > > > > I also take 02 with my CPAP at night now. Yes, I was doing > better...but now I'm not so good. One of the symptoms of the PAH is > chest pain...so there! Dr. Raghu would just look at me when I told him > ab out the pain on exertion...then my last visit we did an ekg - which > showed nothing wrong. > > > > My new doc is very thorough and is kind. I am wondering about others > with the PAH, and how you are doing - etc. > > > > Thanks, Joy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2009 Report Share Posted June 15, 2009 Joy Well, the debate I've read of which he was one side, he did feel everyone should be prescribed Prednisone and typically Imuran would accompany it. The meds he has been heavily involved with in trials and in other ways have been Intermune's products. First, it was Actimmune and now Pirfenidone. It brings to a much larger question in my mind. I was always taught in business that it was extremely important not only to avoid impropriety but to avoid any appearance or any situation where we might have our independence brought into question. That's why we never accepted even the smallest gifts from vendors. Well, universities get research grants as do doctors all the time and most of that seems ok. However, where does it all cross the line? Should a doctor be getting speaking and consulting payments from a Pharmaceutical at the same time he's speaking about how great the future of their products under development are? At what point do you think their judgement might be clouded, even if totally without intent on their part. If I spend hours, days, weeks around you and then you get in an argument with someone else, can I any longer be independent in whose side I take? Now, this gets worse when you take a company like Intermune where executives were charged with criminal acts in their promotion and where they have needed so to continue to bring in more investment dollars in spite of the lack of drugs. Is it appropriate for Dr. Raghu or any other doctor to receive payments from them for years and then to speak about the great promise of the drug they are developing? How do you feel when you read all the articles published by Coalition for Pulmonary Fibrosis about Actimmune and then Pirfenidone? Does it change your confidence to know that at least until the last year or so more than 75% of the funding of CPF came from Intermune? Shouldn't they at least disclose that when they publish such an article? Judges withdraw from cases every day because of potential perceived conflicts. I guess because I know at least one person harmed by Actimmune prescribed off label and know of others that were harmed and some deaths that even resulted. I can't help but question independence of some of the doctors. I also know of some of the excellent education done by CPF but then when I read their articles that picture Pirfenidone in a far more positive light than most others do, I'm concerned. At the least, I feel it distracts from their other articles and information. I am pleased that their funding in 2008 did change dramatically toward more public funding. Note that nowhere here am I saying any of these were swayed by the situations, but I am saying that they opened themselves up to some questions. All of us including doctors have our prejudices and that includes toward companies and treatments we're most familiar with. It also includes personal core beliefs. For instance, the doctor who is terribly scared of facing death is more likely to recommend even those treatments with little chance of helping in an attempt to find any possible help, even at the worst odds and with the most side effects. Some believe in extending life at any cost. Meanwhile others might lean toward quality of life and not offer such choices. The best are those who present the information but let the patient choose based on their own values and thoughts. > > > > > > Hi Sher! > > > > > > I asked my new doc what caused the PAH and she said Prednisone is a > > contributor....we all know how we love pred! I go in next Wed to the > > cardiologist who'll do that thing front your leg to the right heart to > > determine which med I should take and the extent of damage. The high # > > for the hypertension was 43 - I think that is pretty high > > > > > > I also take 02 with my CPAP at night now. Yes, I was doing > > better...but now I'm not so good. One of the symptoms of the PAH is > > chest pain...so there! Dr. Raghu would just look at me when I told him > > ab out the pain on exertion...then my last visit we did an ekg - which > > showed nothing wrong. > > > > > > My new doc is very thorough and is kind. I am wondering about others > > with the PAH, and how you are doing - etc. > > > > > > Thanks, Joy > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2009 Report Share Posted June 15, 2009 Bruce - Very good points. I have noticed the medical clinic that I go to gets all kinds of " sample " drugs. My doctor has even stated that when the salesmen come in, they take the entire staff out for lunch, brunch or even sponsored dinners with the accompanying pitch. My doctor openly goes to these functions but makes no bones about the fact that they have to be exceedingly careful what they dispense. They have been known to discard (as medical waste) some drugs that they have found problems with. They have made it clear to me at least when they have given me a sample to use for an ailment/problem that it is only a one time use and to discontinue immediately if there is any problem. They just don't have the time to know everything about all of the drugs being developed. So, as a personal advocate for myself, I weigh carefuly what I read, hear or see from the media, drug companies, doctors, nurses and even my spouse (he sometimes thinks he has answers for me,... lol). I also do not hesitate to do at a minimum, internet research. Keep in mind, we are all just human, subject to having opinions changed legitimately and illegally as well. Caveat Emptor (let the buyer beware). Stefani Shaner NSIP 6/2009, Diabetes II 2/2006, Sleep Apnea 4/2009 > > > > > > > > Hi Sher! > > > > > > > > I asked my new doc what caused the PAH and she said Prednisone is > a > > > contributor....we all know how we love pred! I go in next Wed to > the > > > cardiologist who'll do that thing front your leg to the right heart > to > > > determine which med I should take and the extent of damage. The > high # > > > for the hypertension was 43 - I think that is pretty high > > > > > > > > I also take 02 with my CPAP at night now. Yes, I was doing > > > better...but now I'm not so good. One of the symptoms of the PAH is > > > chest pain...so there! Dr. Raghu would just look at me when I told > him > > > ab out the pain on exertion...then my last visit we did an ekg - > which > > > showed nothing wrong. > > > > > > > > My new doc is very thorough and is kind. I am wondering about > others > > > with the PAH, and how you are doing - etc. > > > > > > > > Thanks, Joy > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2009 Report Share Posted June 15, 2009 Beth: I am new and I signed up as luvmemax. Then I found this to be unnecessary. My full name is in my email. I was diagnosed with IPF on Nov 1, 2008. My pulmonary fibrosis was triggered by an event--working carelessly with fiber glass insulation. Within one 24 hr. period. I develop a constant day time cough with some spiting. My pulmonary Dr. put me on 60 mg prednisone for a full year. I visited the Cleveland Clinic Dec. 22, 2008 and they also said I had beginning d IPF and they wrote my Dr. suggesting I stop using prednisone. I was able to drop prednisone completely by May 1, 2009 . Since I quit using prednisone my lungs are filling up with Flem and my nasal cavities with mucous. On most days it takes from 4 PM to 11 PM to clear my lungs. The only way I know my lungs have cleared is examination by a nurse at my Pul. Rehap Class. I exercise on a stationary bike 30 min. and walk my dog 40 min each day. I visited the VA hospital in Michigan. The VA pulmonary Dr. insists that I return to a high dosage of predisone to clear my lungs. My brother died of IPF July, 2008. He was an MD who believed in prednisone. He had a lung transplant: however, he lived less than two years with IPF. He suffered many side effects from predinsone to include severe osteoporosis. Do you have IPF contacts living without predisone. If so what are they using as a substitute for pred? I am told that the U. of MI Pulmonary Dept. does not recommend pred. for more than short periods. Burns To: Breathe-Support Sent: Monday, June 15, 2009 7:32:47 AMSubject: Re: PAH and 02 Beverley Joy, PAH is Pulmonary Arterial Hypertension, also known as PH or pulmonary hypertension. Here is some information from the Mayo Clinics website: "Pulmonary hypertension, affects only the arteries in the lungs and the right side of your heart. Pulmonary hypertension begins when tiny arteries in your lungs, called pulmonary arteries and capillaries, become narrowed, blocked or destroyed. This makes it harder for blood to flow through your lungs, which raises pressure within the pulmonary arteries. As the pressure builds, your heart's lower right chamber (right ventricle) must work harder to pump blood through your lungs, eventually causing your heart muscle to weaken and sometimes fail completely. Pulmonary hypertension is a serious illness that becomes progressively worse and is sometimes fatal. Although it isn't curable, treatments are available that can help lessen symptoms and improve your quality of life if you have pulmonary hypertension. " Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Beverley Joy <sparrow_98367@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, June 14, 2009 11:48:38 PMSubject: Re: PAH and 02 What is PAH?Beverley Joy, 71, IPF 1-09, Sjogren's, Fibromyalgia, diabetes, Idaho From: joynoel3208 <joynoel3208@ yahoo.com>Subject: PAH and 02To: Breathe-Support@ yahoogroups. comDate: Sunday, June 14, 2009, 4:19 PM Hi Sher!I asked my new doc what caused the PAH and she said Prednisone is a contributor. ...we all know how we love pred! I go in next Wed to the cardiologist who'll do that thing front your leg to the right heart to determine which med I should take and the extent of damage. The high # for the hypertension was 43 - I think that is pretty highI also take 02 with my CPAP at night now. Yes, I was doing better...but now I'm not so good. One of the symptoms of the PAH is chest pain...so there! Dr. Raghu would just look at me when I told him ab out the pain on exertion...then my last visit we did an ekg - which showed nothing wrong. My new doc is very thorough and is kind. I am wondering about others with the PAH, and how you are doing - etc.Thanks, Joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2009 Report Share Posted June 15, 2009 Bruce, You and I have discussed this in the past and you know that I share many of your concerns about Dr. Raghu. The independence of our physicians is something that we all can easily take for granted and this issue is extremely complex. I just know that I don't want my doctors (any of them) to be beholden to any pharmaceutical company or medical equipment company. I want them to be making decisions based on solid information and research and their own sound medical judgement. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Monday, June 15, 2009 5:11:46 PMSubject: Re: PAH and 02 JoyWell, the debate I've read of which he was one side, he did feeleveryone should be prescribed Prednisone and typically Imuran wouldaccompany it. The meds he has been heavily involved with in trials andin other ways have been Intermune's products. First, it was Actimmuneand now Pirfenidone.It brings to a much larger question in my mind. I was always taught inbusiness that it was extremely important not only to avoid improprietybut to avoid any appearance or any situation where we might have ourindependence brought into question. That's why we never accepted eventhe smallest gifts from vendors.Well, universities get research grants as do doctors all the time andmost of that seems ok. However, where does it all cross the line? Shoulda doctor be getting speaking and consulting payments from aPharmaceutical at the same time he's speaking about how great the futureof their products under development are? At what point do you thinktheir judgement might be clouded, even if totally without intent ontheir part. If I spend hours, days, weeks around you and then you get inan argument with someone else, can I any longer be independent in whoseside I take?Now, this gets worse when you take a company like Intermune whereexecutives were charged with criminal acts in their promotion and wherethey have needed so to continue to bring in more investment dollars inspite of the lack of drugs. Is it appropriate for Dr. Raghu or any otherdoctor to receive payments from them for years and then to speak aboutthe great promise of the drug they are developing? How do you feel whenyou read all the articles published by Coalition for Pulmonary Fibrosisabout Actimmune and then Pirfenidone? Does it change your confidence toknow that at least until the last year or so more than 75% of thefunding of CPF came from Intermune? Shouldn't they at least disclosethat when they publish such an article?Judges withdraw from cases every day because of potential perceivedconflicts. I guess because I know at least one person harmed byActimmune prescribed off label and know of others that were harmed andsome deaths that even resulted. I can't help but question independenceof some of the doctors. I also know of some of the excellent educationdone by CPF but then when I read their articles that picture Pirfenidonein a far more positive light than most others do, I'm concerned. At theleast, I feel it distracts from their other articles and information. Iam pleased that their funding in 2008 did change dramatically towardmore public funding.Note that nowhere here am I saying any of these were swayed by thesituations, but I am saying that they opened themselves up to somequestions. All of us including doctors have our prejudices and thatincludes toward companies and treatments we're most familiar with. Italso includes personal core beliefs. For instance, the doctor who isterribly scared of facing death is more likely to recommend even thosetreatments with little chance of helping in an attempt to find anypossible help, even at the worst odds and with the most side effects.Some believe in extending life at any cost. Meanwhile others might leantoward quality of life and not offer such choices. The best are thosewho present the information but let the patient choose based on theirown values and thoughts.> > >> > > Hi Sher!> > >> > > I asked my new doc what caused the PAH and she said Prednisone isa> > contributor. ...we all know how we love pred! I go in next Wed tothe> > cardiologist who'll do that thing front your leg to the right heartto> > determine which med I should take and the extent of damage. Thehigh #> > for the hypertension was 43 - I think that is pretty high> > >> > > I also take 02 with my CPAP at night now. Yes, I was doing> > better...but now I'm not so good. One of the symptoms of the PAH is> > chest pain...so there! Dr. Raghu would just look at me when I toldhim> > ab out the pain on exertion...then my last visit we did an ekg -which> > showed nothing wrong.> > >> > > My new doc is very thorough and is kind. I am wondering aboutothers> > with the PAH, and how you are doing - etc.> > >> > > Thanks, Joy> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2009 Report Share Posted June 15, 2009 Hi Bruce and Stefani,Prior to being Dx'd with ILD I stopped seeing my 'general doctor' in Denver because they always had so many drug reps in their office and the doctors there always gave me the Rx for the latest, most expensive drug. Mind you, we have good insurance but I would rather not take any Rx but if I need to take something I want it to be around for a long time and all the side effects and problems known. When I was acutely ill the summer of '07 the doctor put me on Advair and Nasonex. I immediately got thrush from the Advair (learned from a friend who has asthma that she had too) and bloody noses from Nasonex. I got so d*** mad that I quit everything and called National Jewish, waited 12 weeks for my appointment and got better during that time without any help from drugs. I love the quote that says, "medicine is the art of entertaining the patient while nature cures the disease". I wish it were true for us. Dr. R. must not enjoy having me for a patient. I refuse to take Prednisone or get a biopsy. I'm all about natural health and love my acupuncture doctor. Maybe she'll cure me! Here's hoping!Peggy E.Subject: Re: PAH and 02To: Breathe-Support Date: Monday, June 15, 2009, 2:52 PM Bruce - Very good points. I have noticed the medical clinic that I go to gets all kinds of "sample" drugs. My doctor has even stated that when the salesmen come in, they take the entire staff out for lunch, brunch or even sponsored dinners with the accompanying pitch. My doctor openly goes to these functions but makes no bones about the fact that they have to be exceedingly careful what they dispense. They have been known to discard (as medical waste) some drugs that they have found problems with. They have made it clear to me at least when they have given me a sample to use for an ailment/problem that it is only a one time use and to discontinue immediately if there is any problem. They just don't have the time to know everything about all of the drugs being developed. So, as a personal advocate for myself, I weigh carefuly what I read, hear or see from the media, drug companies, doctors, nurses and even my spouse (he sometimes thinks he has answers for me,... lol). I also do not hesitate to do at a minimum, internet research. Keep in mind, we are all just human, subject to having opinions changed legitimately and illegally as well. Caveat Emptor (let the buyer beware). Stefani Shaner NSIP 6/2009, Diabetes II 2/2006, Sleep Apnea 4/2009 > > > > > > > > Hi Sher! > > > > > > > > I asked my new doc what caused the PAH and she said Prednisone is > a > > > contributor. ...we all know how we love pred! I go in next Wed to > the > > > cardiologist who'll do that thing front your leg to the right heart > to > > > determine which med I should take and the extent of damage. The > high # > > > for the hypertension was 43 - I think that is pretty high > > > > > > > > I also take 02 with my CPAP at night now. Yes, I was doing > > > better...but now I'm not so good. One of the symptoms of the PAH is > > > chest pain...so there! Dr. Raghu would just look at me when I told > him > > > ab out the pain on exertion...then my last visit we did an ekg - > which > > > showed nothing wrong. > > > > > > > > My new doc is very thorough and is kind. I am wondering about > others > > > with the PAH, and how you are doing - etc. > > > > > > > > Thanks, Joy > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2009 Report Share Posted June 17, 2009 Bruce: Thanks for your thoughts about my problem. You may understand more than most. I am saving your email as I have more questions for you. It is midnight here and I have just finished taking my meds. I have never smoked, the only thing that could cause COPD is second hand smoke. I do have some obstructive problems probably from the abundance of pollen in MI. To: Breathe-Support Sent: Monday, June 15, 2009 7:05:47 PMSubject: Re: PAH and 02 You definitely need to get another consultation with Cleveland Clinic orsomeone. The congestion you describe is another issue on top of thescarring or fibrosis of your lungs. It could be many things and,therefore, helped my other things. It could well be COPD and then helpedby inhalers. Or it could just be phlegm helped by something likeMucinex. Until I hear the word "inflammation" then I'm not ready to jumpinto the prednisone ship. All Interstitial Lung Diseases are not thesame. All lung diseases are not interstitial. One other thing. Do youhave acid reflux/GERD? This also could be from it and then a proteinpump inhibitor such as Prilosec or Nexium might help. So, someoneknowledgeable needs to tell you what the mucous is and then recommendsomething to help you.I do not take prednisone. However, given the right diagnosis andinformation I would. I've just been determined to have the least likelyof situations for it to be helpful.>>> From: joynoel3208 <joynoel3208@ yahoo.com>> Subject: PAH and 02> To: Breathe-Support@ yahoogroups. com> Date: Sunday, June 14, 2009, 4:19 PM>>> Hi Sher!>> I asked my new doc what caused the PAH and she said Prednisone is acontributor. ...we all know how we love pred! I go in next Wed to thecardiologist who'll do that thing front your leg to the right heart todetermine which med I should take and the extent of damage. The high #for the hypertension was 43 - I think that is pretty high>> I also take 02 with my CPAP at night now. Yes, I was doingbetter...but now I'm not so good. One of the symptoms of the PAH ischest pain...so there! Dr. Raghu would just look at me when I told himab out the pain on exertion...then my last visit we did an ekg - whichshowed nothing wrong.>> My new doc is very thorough and is kind. I am wondering about otherswith the PAH, and how you are doing - etc.>> Thanks, Joy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2009 Report Share Posted June 18, 2009 Update - June 23rd I go in for my catheter for PAH to see if I would benefit from drugs or not. My Pulm Dr. Keenan made an appt for me with Dr. Raghu for July - something about the Imurin I'm taking may have to be changed depending on outcome of the cath. So, that's where I am today! My chest feels heavy and hurts today too. I didn't get to sleep until 4 a.m. this morning and had to get up early to take my doggie to the vet. I'm at work - I work 3-11 pm today and tomorrow! Hope I sleep tonight. Take care, Joy > > > > > > From: joynoel3208 <joynoel3208@ yahoo.com> > > Subject: PAH and 02 > > To: Breathe-Support@ yahoogroups. com > > Date: Sunday, June 14, 2009, 4:19 PM > > > > > > Hi Sher! > > > > I asked my new doc what caused the PAH and she said Prednisone is a > contributor. ...we all know how we love pred! I go in next Wed to the > cardiologist who'll do that thing front your leg to the right heart to > determine which med I should take and the extent of damage. The high # > for the hypertension was 43 - I think that is pretty high > > > > I also take 02 with my CPAP at night now. Yes, I was doing > better...but now I'm not so good. One of the symptoms of the PAH is > chest pain...so there! Dr. Raghu would just look at me when I told him > ab out the pain on exertion...then my last visit we did an ekg - which > showed nothing wrong. > > > > My new doc is very thorough and is kind. I am wondering about others > with the PAH, and how you are doing - etc. > > > > Thanks, Joy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 Thanks, Burns. I want to add sone months to my life,even if I have to deal with being miserable. Not all Polmonary docters sgree with me. To: Breathe-Support Sent: Sunday, June 21, 2009 8:23:09 PMSubject: Re: PAH and 02 my goodness reading this and MB with the amount of Prednisone. Amazes me and i think my 20mg is alot.. patti FRiend> > From: joynoel3208 <joynoel3208@ yahoo.com>> Subject: PAH and 02> To: Breathe-Support@ yahoogroups. com> Date: Sunday, June 14, 2009, 4:19 PM> > Hi Sher!> > I asked my new doc what caused the PAH and she said Prednisone is a > contributor. ...we all know how we love pred! I go in next Wed to the > cardiologist who'll do that thing front your leg to the right heart > to determine which med I should take and the extent of damage. The > high # for the hypertension was 43 - I think that is pretty high> > I also take 02 with my CPAP at night now. Yes, I was doing > better...but now I'm not so good. One of the symptoms of the PAH is > chest pain...so there! Dr. Raghu would just look at me when I told > him ab out the pain on exertion...then my last visit we did an ekg - > which showed nothing wrong.> > My new doc is very thorough and is kind. I am wondering about others > with the PAH, and how you are doing - etc.> > Thanks, Joy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2009 Report Share Posted June 23, 2009 do you take NAC ? it does help some of us. Also the benzonatate. The NAC gave me stomach problems. I take everything I can to help with mucus. I also buy tissue by the case.. I am a little concerned about going on this trip because of the heat. When I go out for just a min. I cough for 30 min when I come back in. Just can't breath in the heat or cold is the same. my hubby says I need a bubble. I am having 24 tanks delivered to Cumberland Falls but I am taking my concentrator because I have to have it at night and the kids think we need to stop one night going and one coming back.. We'll see.Anyhow have a good one. I'll be praying about this mucus thing. Feel better, take care of you.Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Peggy, I have many problems with mucous, coughing and far too much problem in my lungs. I am determined to solve this problem or live with it. From: mtjvst <mtjvst (AT) yahoo (DOT) com>To: Breathe-Support Sent: Sunday, June 21, 2009 8:23:09 PMSubject: Re: PAH and 02 my goodness reading this and MB with the amount of Prednisone. Amazes me and i think my 20mg is alot.. patti FRiend> > From: joynoel3208 <joynoel3208@ yahoo.com>> Subject: PAH and 02> To: Breathe-Support@ yahoogroups. com> Date: Sunday, June 14, 2009, 4:19 PM> > Hi Sher!> > I asked my new doc what caused the PAH and she said Prednisone is a > contributor. ...we all know how we love pred! I go in next Wed to the > cardiologist who'll do that thing front your leg to the right heart > to determine which med I should take and the extent of damage. The > high # for the hypertension was 43 - I think that is pretty high> > I also take 02 with my CPAP at night now. Yes, I was doing > better...but now I'm not so good. One of the symptoms of the PAH is > chest pain...so there! Dr. Raghu would just look at me when I told > him ab out the pain on exertion...then my last visit we did an ekg - > which showed nothing wrong.> > My new doc is very thorough and is kind. I am wondering about others > with the PAH, and how you are doing - etc.> > Thanks, Joy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2009 Report Share Posted June 24, 2009 Peggy: I tried NAC and stopped it to see if no NAC would eliminate my coughing, Phlegm and Mucous. No Change, so I will soon try NAC again What is benzonstate? All new to me. We had a really bad rain here and it washed out the pollen for two days and it was a great improvement for me. Now I am trying to dry up my basement, tear out dry wall and Two-by-fours. My furnace and its anti-mold and bacteria gadget is out and waiting on a repairman. I begged for priority as a 70+ and also lung problems. Reply, we have to provide service to many old folks. There is mold in my basement and I have an unemployed friend taking out dry wall and walls. I really hope this does not set me back. To: Breathe-Support Sent: Tuesday, June 23, 2009 11:10:54 AMSubject: Re: Re: PAH and 02 do you take NAC ? it does help some of us. Also the benzonatate. The NAC gave me stomach problems. I take everything I can to help with mucus. I also buy tissue by the case.. I am a little concerned about going on this trip because of the heat. When I go out for just a min. I cough for 30 min when I come back in. Just can't breath in the heat or cold is the same. my hubby says I need a bubble. I am having 24 tanks delivered to Cumberland Falls but I am taking my concentrator because I have to have it at night and the kids think we need to stop one night going and one coming back.. We'll see. Anyhow have a good one. I'll be praying about this mucus thing. Feel better, take care of you. Love and Prayers, Peggy IPF 2004, Florida Worry looks around, Sorry looks back, Faith looks up. Peggy, I have many problems with mucous, coughing and far too much problem in my lungs. I am determined to solve this problem or live with it. From: mtjvst <mtjvst (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sunday, June 21, 2009 8:23:09 PMSubject: Re: PAH and 02 my goodness reading this and MB with the amount of Prednisone. Amazes me and i think my 20mg is alot.. patti FRiend> > From: joynoel3208 <joynoel3208@ yahoo.com>> Subject: PAH and 02> To: Breathe-Support@ yahoogroups. com> Date: Sunday, June 14, 2009, 4:19 PM> > Hi Sher!> > I asked my new doc what caused the PAH and she said Prednisone is a > contributor. ...we all know how we love pred! I go in next Wed to the > cardiologist who'll do that thing front your leg to the right heart > to determine which med I should take and the extent of damage. The > high # for the hypertension was 43 - I think that is pretty high> > I also take 02 with my CPAP at night now. Yes, I was doing > better...but now I'm not so good. One of the symptoms of the PAH is > chest pain...so there! Dr. Raghu would just look at me when I told > him ab out the pain on exertion...then my last visit we did an ekg - > which showed nothing wrong.> > My new doc is very thorough and is kind. I am wondering about others > with the PAH, and how you are doing - etc.> > Thanks, Joy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2009 Report Share Posted June 25, 2009 Irony: i live in a 55+ community this year they asked for letters if you needed snow removal quickly due to medical reasons of course i sent one in, but i wonder how many others sent in letters don't know the stats, but I'm sure there is at least one household on every block that needs snow removal quickly for medical reasons which medical reason is the priority? hello triage Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: PAH and 02To: Breathe-Support Cc: "john burns" Date: Wednesday, June 24, 2009, 10:34 PM Peggy: I tried NAC and stopped it to see if no NAC would eliminate my coughing, Phlegm and Mucous. No Change, so I will soon try NAC again What is benzonstate? All new to me. We had a really bad rain here and it washed out the pollen for two days and it was a great improvement for me. Now I am trying to dry up my basement, tear out dry wall and Two-by-fours. My furnace and its anti-mold and bacteria gadget is out and waiting on a repairman. I begged for priority as a 70+ and also lung problems. Reply, we have to provide service to many old folks. There is mold in my basement and I have an unemployed friend taking out dry wall and walls. I really hope this does not set me back. From: Peggy <pac1773 (AT) cfl (DOT) rr.com>To: Breathe-Support@ yahoogroups. comSent: Tuesday, June 23, 2009 11:10:54 AMSubject: Re: Re: PAH and 02 do you take NAC ? it does help some of us. Also the benzonatate. The NAC gave me stomach problems. I take everything I can to help with mucus. I also buy tissue by the case.. I am a little concerned about going on this trip because of the heat. When I go out for just a min. I cough for 30 min when I come back in. Just can't breath in the heat or cold is the same. my hubby says I need a bubble. I am having 24 tanks delivered to Cumberland Falls but I am taking my concentrator because I have to have it at night and the kids think we need to stop one night going and one coming back.. We'll see. Anyhow have a good one. I'll be praying about this mucus thing. Feel better, take care of you. Love and Prayers, Peggy IPF 2004, Florida Worry looks around, Sorry looks back, Faith looks up. Peggy, I have many problems with mucous, coughing and far too much problem in my lungs. I am determined to solve this problem or live with it. From: mtjvst <mtjvst (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sunday, June 21, 2009 8:23:09 PMSubject: Re: PAH and 02 my goodness reading this and MB with the amount of Prednisone. Amazes me and i think my 20mg is alot.. patti FRiend> > From: joynoel3208 <joynoel3208@ yahoo.com>> Subject: PAH and 02> To: Breathe-Support@ yahoogroups. com> Date: Sunday, June 14, 2009, 4:19 PM> > Hi Sher!> > I asked my new doc what caused the PAH and she said Prednisone is a > contributor. ...we all know how we love pred! I go in next Wed to the > cardiologist who'll do that thing front your leg to the right heart > to determine which med I should take and the extent of damage. The > high # for the hypertension was 43 - I think that is pretty high> > I also take 02 with my CPAP at night now. Yes, I was doing > better...but now I'm not so good. One of the symptoms of the PAH is > chest pain...so there! Dr. Raghu would just look at me when I told > him ab out the pain on exertion...then my last visit we did an ekg - > which showed nothing wrong.> > My new doc is very thorough and is kind. I am wondering about others > with the PAH, and how you are doing - etc.> > Thanks, Joy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2009 Report Share Posted June 25, 2009 Pink Good question. Yours is not for you to get out but for your oxygen supplier to get in (although really only with power failure in which case much more serious issues). Dialysis users would need out. One thing that is available in some areas is getting electricity priority though and that can be very important to all of us. Now, the first thought one has is their concentrator or other medical equipment. However, in your temperatures, managing without heat would be impossible. In winter I'd have that concern here. In summer, there is no way I could manage 105 degree temperatures without air conditioning. I'd have to head elsewhere. Everyone might want to think what their emergency plan is. > > > > From: joynoel3208 <joynoel3208@ yahoo.com> > > Subject: PAH and 02 > > To: Breathe-Support@ yahoogroups. com > > Date: Sunday, June 14, 2009, 4:19 PM > > > > Hi Sher! > > > > I asked my new doc what caused the PAH and she said Prednisone is a > > contributor. ...we all know how we love pred! I go in next Wed to the > > cardiologist who'll do that thing front your leg to the right heart > > to determine which med I should take and the extent of damage. The > > high # for the hypertension was 43 - I think that is pretty high > > > > I also take 02 with my CPAP at night now. Yes, I was doing > > better...but now I'm not so good. One of the symptoms of the PAH is > > chest pain...so there! Dr. Raghu would just look at me when I told > > him ab out the pain on exertion...then my last visit we did an ekg - > > which showed nothing wrong. > > > > My new doc is very thorough and is kind. I am wondering about others > > with the PAH, and how you are doing - etc. > > > > Thanks, Joy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2009 Report Share Posted June 25, 2009 Bruce when the first o2 delivery came -- included was a large green tank with wheels (maybe an E tank?) the delivery man said that this is for power failures that was almost 3 years ago and has not been touched Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: PAH and 02To: Breathe-Support Date: Thursday, June 25, 2009, 11:23 AM PinkGood question. Yours is not for you to get out but for your oxygensupplier to get in (although really only with power failure in whichcase much more serious issues). Dialysis users would need out.One thing that is available in some areas is getting electricitypriority though and that can be very important to all of us. Now, thefirst thought one has is their concentrator or other medical equipment.However, in your temperatures, managing without heat would beimpossible. In winter I'd have that concern here. In summer, there is noway I could manage 105 degree temperatures without air conditioning. I'dhave to head elsewhere.Everyone might want to think what their emergency plan is.> >> > From: joynoel3208 <joynoel3208@ yahoo.com>> > Subject: PAH and 02> > To: Breathe-Support@ yahoogroups. com> > Date: Sunday, June 14, 2009, 4:19 PM> >> > Hi Sher!> >> > I asked my new doc what caused the PAH and she said Prednisone is a> > contributor. ...we all know how we love pred! I go in next Wed tothe> > cardiologist who'll do that thing front your leg to the right heart> > to determine which med I should take and the extent of damage. The> > high # for the hypertension was 43 - I think that is pretty high> >> > I also take 02 with my CPAP at night now. Yes, I was doing> > better...but now I'm not so good. One of the symptoms of the PAH is> > chest pain...so there! Dr. Raghu would just look at me when I told> > him ab out the pain on exertion...then my last visit we did an ekg -> > which showed nothing wrong.> >> > My new doc is very thorough and is kind. I am wondering about others> > with the PAH, and how you are doing - etc.> >> > Thanks, Joy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2009 Report Share Posted June 25, 2009 Joyce, I have one of those huge tanks in my garage. It's probably about 4 feet tall and as big around as a medium size tree. I've used it several times during power outages over the last year and a half and it's still half full. My supplier called it an M tank. E tanks are considerably smaller about 3 feet tall or so and fit in those rolling carts. That's what I use when I'm out and about. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, June 25, 2009 2:48:49 PMSubject: Re: Re: PAH and 02 Bruce when the first o2 delivery came -- included was a large green tank with wheels (maybe an E tank?) the delivery man said that this is for power failures that was almost 3 years ago and has not been touched Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: PAH and 02To: Breathe-Support@ yahoogroups. comDate: Thursday, June 25, 2009, 11:23 AM PinkGood question. Yours is not for you to get out but for your oxygensupplier to get in (although really only with power failure in whichcase much more serious issues). Dialysis users would need out.One thing that is available in some areas is getting electricitypriority though and that can be very important to all of us. Now, thefirst thought one has is their concentrator or other medical equipment.However, in your temperatures, managing without heat would beimpossible. In winter I'd have that concern here. In summer, there is noway I could manage 105 degree temperatures without air conditioning. I'dhave to head elsewhere.Everyone might want to think what their emergency plan is.> >> > From: joynoel3208 <joynoel3208@ yahoo.com>> > Subject: PAH and 02> > To: Breathe-Support@ yahoogroups. com> > Date: Sunday, June 14, 2009, 4:19 PM> >> > Hi Sher!> >> > I asked my new doc what caused the PAH and she said Prednisone is a> > contributor. ...we all know how we love pred! I go in next Wed tothe> > cardiologist who'll do that thing front your leg to the right heart> > to determine which med I should take and the extent of damage. The> > high # for the hypertension was 43 - I think that is pretty high> >> > I also take 02 with my CPAP at night now. Yes, I was doing> > better...but now I'm not so good. One of the symptoms of the PAH is> > chest pain...so there! Dr. Raghu would just look at me when I told> > him ab out the pain on exertion...then my last visit we did an ekg -> > which showed nothing wrong.> >> > My new doc is very thorough and is kind. I am wondering about others> > with the PAH, and how you are doing - etc.> >> > Thanks, Joy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2009 Report Share Posted June 25, 2009 Pink Yes, it is for power failures...but how long will it last? I'm use to the old ice storms that took power for three days. Fortunately those are mostly in the past. > > > > > > From: joynoel3208 <joynoel3208@ yahoo.com> > > > Subject: PAH and 02 > > > To: Breathe-Support@ yahoogroups. com > > > Date: Sunday, June 14, 2009, 4:19 PM > > > > > > Hi Sher! > > > > > > I asked my new doc what caused the PAH and she said Prednisone is a > > > contributor. ...we all know how we love pred! I go in next Wed to > the > > > cardiologist who'll do that thing front your leg to the right heart > > > to determine which med I should take and the extent of damage. The > > > high # for the hypertension was 43 - I think that is pretty high > > > > > > I also take 02 with my CPAP at night now. Yes, I was doing > > > better...but now I'm not so good. One of the symptoms of the PAH is > > > chest pain...so there! Dr. Raghu would just look at me when I told > > > him ab out the pain on exertion...then my last visit we did an ekg - > > > which showed nothing wrong. > > > > > > My new doc is very thorough and is kind. I am wondering about others > > > with the PAH, and how you are doing - etc. > > > > > > Thanks, Joy > > > > > > Quote Link to comment Share on other sites More sharing options...
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