Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 Hi dragonflymcs, thanks for the info,. very intersting. Have a good day. Guy > > > > > > > > > > Hi All, > > > > > > > > > > Sorry I haven't posted in a few days again, but I am back from > > > > > Birmingham. Still don't know anything definite other than the > > > > > diagnosis I already have of UIP. First when I got there, they > did > > > > > ABGs (OMG!! It hurt so bad!! I had it done once before and I > > didn't > > > > > even feel it, but not this time. She had to pry (her words)). > Then > > > > > I had to do PFTs, which showed 57% lung function, compared to > the > > > 68% > > > > > I had in December. Next, I visited with the doc. Actually > there > > > > > were 2 docs. The first one was a fellow of Dr. de Andrade > (who was > > > > > the Assistant Professor). His name was Dr. , very nice > guy. > > > > > He took down all my history and said he thinks I may have > > pulmonary > > > > > hypertension (which would explain the rapid heart rate). He > did > > exam > > > > > and then goes to discuss with Dr. de Andrade, who comes back > in > > and > > > > > again, very nice guy. He explains that it is very rare in a > woman > > > > > under the age of 50 to have pulmonary fibrosis and since I > have > > been > > > > > sick for 6 years already, even more rare, not unheard of, just > > rare. > > > > > So I am a model case!! Anyhoo, due to this fact that I AM so > rare, > > > > > he thinks there is an underlying disease causing the PF, so I > get > > > > > blood work (10 tubes of blood) for various autoimmune > diseases. He > > > > > is leaning towards Sjogren's or scleroderma (mostly > scleroderma > > for > > > > > which also there is no cure). Dr. did a heart exam and > > looked > > > > > at the veins in my neck before talking to Dr.. de Andrade who > > decided > > > > > I needed another chest CT (my last one was in February 2008), > so I > > > > > had that done (without contrast thank God!!) and also that I > > needed > > > > > an ultrasound of my heart to check for blood flow to the > heart and > > > > > for any blockages to the valves. All in all, he said if I > don't > > hear > > > > > from them in a week, to call them to get the results. Other > than > > > > > that, he didn't change any of my medications, except to > decrease > > the > > > > > prednisone even further to 10 mg a day. He said he wants me > to get > > > > > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! > I > > > > > told him I had gained 20 pounds since being on them starting > in > > > > > January, and told him I have moon faces and he agreed. He said > > they > > > > > want me lean and healthy and I did not need to be on that for > > sure. > > > > > Any weight gain is out of the question, he said. He told me I > have > > > > > to keep moving. He told me to eat lean proteins, fruits, and > > veggies > > > > > and no snacks. He PROMISED me the weight will come off. He > said he > > > > > expects me to lose 10 pounds rather quickly. I sure hope he is > > > > > right, because I am miserable and I told him so, too!! He said > > there > > > > > are no real medications to treat PF, and I knew that, but he > said > > > > > when I come back, I can decide either to go with the Imuran > and N- > > > > > Acetyl-Cysteine (NAC), which is all the best they know at this > > point > > > > > to give patients with PF, or I can try an experimental drug > > > (clinical > > > > > trial), which I don't know what the side effects will be, but > I am > > > > > kinda leaning towards doing anyway, because I feel like even > if it > > > > > doesn't help me, it may help some other person with this > stupid > > > > > disease on down the road and it would be worth it. As for lung > > > > > transplant, I don't yet qualify because my sats are not low > enough > > > > > and I am not on oxygen yet. Note that I said " YET. " He said > the > > key > > > > > to prolonging oxygen use as long as possible is to stay as > active > > > and > > > > > healthy as possible and that is what I am going to try and do. > > > > > (my grandson) is here with me this summer, and he > really > > > > > helps to keep me motivated and I think I need that right now. > Also > > > > > the docs were really glad to know that I am in pulmonary > rehab and > > > > > that I am going to stay in the Wellness Program when I get > done > > with > > > > > the rehab program. All in all, even though I did get some not > so > > > > > good news, I feel like I got some good news, also, so until > next > > > week > > > > > or whenever I get the results, I am just trying to keep my > self in > > > > > exercise and health mode the best I can and keep going. > > > > > > > > > > So that was my Birmingham visit. My parents went with me and > we > > > > > really had a nice trip. I don't know what I would do without > them. > > > > > They have been my rock through all of this. Thank God for my > Mama > > > > > and Daddy!! > > > > > > > > > > I hope you all have a great week and now that I am back I > hope to > > be > > > > > able to keep up with posts better and write more than I have > been. > > I > > > > > do reads all the posts and think of each and every one of you > > > > > everyday. You are my air family and you are my rock, as well. > > Don't > > > > > know what I would do without you guys, either!! I love you > all!! > > > > > > > > > > Have a great day!! > > > > > > > > > > Caro > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2008 Report Share Posted June 24, 2008 Thank you so much Mayleen for sharing your very, very sad story my heart goes out to you and your fiancee. I also read Kim's sad story. Mold does make you sick and you are the living or should I say the sickening proof of it. Again thank you for sharing. Having lived for 30 years in a Native Community I have learn to respest the environment. The Earth does not belong to man, man belongs to the Earth. All things are connected, like the blood that unites us all. Man did not weave the web of life, he is but a stand in it; watever he does to the web, he does to himself. Chief Seattle. Please take care and may the creater be with you. Guy IPF 03 > > > > > > Hi Guy, Is this also your problem ? If so may I put you in touch > > with someone in Canada who is familiar with issues over there. I > do > > not know if she/he can help you however you I can contact them for > > you and see what happens. Sorry if this is your situation, hard to > > live with toxic waste near by. Horrible ! > > > > > > > > > > > > God Bless !! > > > dragonflymcs > > > Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 > > > < Click on me !! > > > > > > > > > > > > My neighbour > > > > > > > > > Hi all, I feel like venting a little today 12 days after the > > > inplantation of my Pacemaker, I'm doing okay but a little > fatigue. > > I > > > want to share a letter sent by one of my nieghbour that also > suffer > > > from the toxics coming from a dump that we have battle to have > > closed > > > since a fire was declared back in December of 2004 the dump was > > > opened > > > in 1989 and was never managed properly by the owners and for 4 > > years > > > before the fire it was never inspected by our minitry of the > > > environment here in Quebec, Canada what a shame. > > > > > > Here is the letter from my neighbour; > > > > > > Bonjour Madame la ministre Line Beauchamp, > > > > > > Since the fall of 2004, my husband and I have unpleasantly aware > of > > > the > > > Cantley DMS. We heve smelled the gasses, we have had the sore, > > > burning > > > throats, the headaches, the heavy chests, the coughing and the > > thick > > > mucus, the sore, dry eyes, the itchy skin, apnea and high blood > > > presure. All of these symptoms can be traced back to the gases we > > are > > > daily breathing in Daily, since before we even noticed the > presece > > of > > > H2S, we know there many gases present that are odourless and > > escaping > > > from the filter system. > > > > > > In March 2005, the day before we evacuated our farm and home > (coming > > > back and forth 3x/day to fed and clean the cattle and sheep) our > > best > > > cattle dog was uthanized and an autpsy done right then.. All this > > just > > > before Ministry of Environment and the owners of the DMS put on > > their > > > news conference to " reasure " us. > > > > > > The autopsy ststed that our dog had a rare and quick cancer of > the > > > lungs. His symptoms began after Chistmas 07, with just a cough, > > then > > > to > > > goughing and vomiting. Then the rolling of his nose in the snow, > > > leaving the snow on his muzzle. He then began to have more > trouble > > > breathing, his head hung low and stretched out to somehow get > more > > > oxygenin. He soon could not keep any food down. We were in plans > to > > > take chest x-rays with our vets portable machine, but on that > > morning > > > visit he couldn't even get up. Our good and faithful companion > was > > > then > > > injected, and the vet began the autosy on site of our farm. > > > > > > Samples of all his organs were sent to the Alta Vista lab and > these > > > were anlysized by vets in Ottawa, specialists in cancer of > animals. > > > they had never seen a case such as this. > > > > > > We wath and listen with much concern, as our neighbours and > friends > > > have constant or reoccuring health problems. All very similar and > > > repetitive in the group of people living in the radius of 2 km > from > > > the > > > Cantley DMS (dump). > > > > > > This dump site is all but totally abandoned as far as up keep and > > > safe > > > maintenance. Infractions are continuing weekly, and the ordinance > > is > > > still not followed for the last few years. > > > > > > We, the community of Cantley, are not blind. We see all too well > > what > > > is being allowed to happen on this property.We want it to STOP. > We > > > want > > > it to STOP RIGHT NOW. Today! > > > > > > This taxic environnment cyst is not going away, and to be sure, > WE > > > ARE > > > NOT GOING TO GO AWAY UNTIL THIS IS SOLVED! > > > > > > YOU are not doing ENOUGH. It is not enough to sit in an office > and > > > watch as the health and environment go down the toilet. > > > > > > I am waiting anxiously for the announcement from Ministry office > to > > > say, " we are now taking over the entire responsibility of the DMS > > > dump > > > site " > > > > > > Sue Roth McClelland > > > 1045 Montee de la Source > > > Cantley Quebec > > > J8V3J9 > > > > > > It is a shame for a government to let it happen and for soooo > long. > > > Sorry for venting, if you go to message # 82 YOU WILL SEE MY > > > FRUSTRATIONS AND ACTION THEN. > > > > > > HAVE A GOOD day and God bless. > > > > > > Frienship. Guy IPF 03 age 69 and not ready to give up.. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2008 Report Share Posted June 25, 2008 Thank you Guy for sharing your story with me, us. I grew up in NY and made a drastic change of life at the age of 14. From side walks to mountains. I must say I enjoyed it although I suffered a cultural shock. But the view, the walks, the swims and climbing was all worth it. In the end i had a new appreciation for nature. I was always a very active child that just gave me more ways to do things and a whole new perspective. Thanks for sharing once again. Had a problem with email yesterday, I will let you know when I hear something. God Bless !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 < Click on me !! Mayleen Good morning Mayleen and all,I presently live in Cantley Quebec, Canada it's about 30 km from Ottawa.For 30 years I lived in a small northen community Moosone, Ontario at the mouth of Bay. I was a Business Administrator and Secretary-Treasurer for a school board. My wife his from Attawapiskat 220 km north of Moosone on the west coast of Bay she his a Native Canadian, I have 5 children and 4 grandchidren. I loved it up north no pollution, but I came back after my parents pass-away in 1999 and took over the family home here in Cantley. While in the north like you we lived off the land mostely fishing and hunting wich was and still is a way of life for native people. We hunted for moose, caribou and geeses and fishing for artic salmon and walleye. My wife, even at 67 still goes back Attawapiskat once a year for 3 to 4 weeks living in a tent and doing what she did and loved when she was there as a young girl, the place of her birth. There are no road to get to Moosonee only a train every two days and from Moosonee on north only plane was the mode of transport, I owned a small plane while in the north and that made it easy for me and my family to travel. And that was the good life. Having said that you may know me a little better. I hope that you are all feeling okay today.Have a pleasant day and God bless.Guy IPF 03 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.