Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 hi, im marko, im 20. i just joined up. im currently being bounced between doctors and specialists for my chest. they have so far confirmed that my lungs are scarred but are not certain as to the cause, work is the favourite. i was just wondering what i can expect my life to be like from now on. at the moment im finding myself short of breath easily, randomly dizzy, ive lost waight and im not eating as much as i used to. im also finding i often have sharp pains in my upper chest. if and when they find out the cause of the problems can i expect things to improve or am i doomed to live the rest of my life like this? i work in a welding shop and have done for 4 years, i do not smoke and i rarely enter any other 'dirty' places. i expect if it is work i am going to be having to be transferred out the welding shop. is there any advice you guys (and gals) can give me? thanks marko Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Marko, Here is a web site and a inspirational profile you might find helpful: http://www.pulmonaryfibrosis.org/johnwade.htm Good luck, Tim hi, im marko, im 20. i just joined up. im currently being bounced between doctors and specialists for my chest. they have so far confirmed that my lungs are scarred but are not certain as to the cause, work is the favourite. i was just wondering what i can expect my life to be like from now on. at the moment im finding myself short of breath easily, randomly dizzy, ive lost waight and im not eating as much as i used to. im also finding i often have sharp pains in my upper chest. if and when they find out the cause of the problems can i expect things to improve or am i doomed to live the rest of my life like this? i work in a welding shop and have done for 4 years, i do not smoke and i rarely enter any other 'dirty' places. i expect if it is work i am going to be having to be transferred out the welding shop. is there any advice you guys (and gals) can give me? thanks marko Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 thanks, i appreciate that link. will save it and have a read a bit later. i was at my doctors on thursday just gone, they phoned the hospital and have insisted my appointment with the specialist that was originally planned for april 3rd be made asap, said i will be seen within 10 days cos doctor not happy with something. eek. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 Why didn't they tell you what was wrong? --Diane Quinlan dianequinlan@... -------------- Original message -------------- i was at my doctors on thursday just gone, they phoned the hospitaland have insisted my appointment with the specialist that wasoriginally planned for april 3rd be made asap, said i will be seenwithin 10 days cos doctor not happy with something. eek. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2006 Report Share Posted February 18, 2006 Markogta, Are you in United Kingdom? Do you have the opportunity there (under your health care system) to choose your own pulmonologist? Let us know what you find out when you go back. We should not allow doctors to talk over our heads! I have been sick so long that doctors do not intimidate me so much. I also know that I have a right to my own medical information. Nice to have you here, Joyce > > Why didn't they tell you what was wrong? > > -- > Diane Quinlan > dianequinlan@... > > > -------------- Original message -------------- > From: " markogta " markogta@... > > i was at my doctors on thursday just gone, they phoned the hospital > and have insisted my appointment with the specialist that was > originally planned for april 3rd be made asap, said i will be seen > within 10 days cos doctor not happy with something. eek. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2006 Report Share Posted February 18, 2006 Diane, I love your attitude! Indeed, he should have been told! Some doctors just look right through you standing there with thier hand on the doorknob. Not me, there I stand...blocking thier quick exit with my list of questions in hand. I pay my bills, I expect answers! Joyce>> Why didn't they tell you what was wrong? > > --> Diane Quinlan > dianequinlan@... > > > -------------- Original message -------------- > From: "markogta" markogta@... > > i was at my doctors on thursday just gone, they phoned the hospital> and have insisted my appointment with the specialist that was> originally planned for april 3rd be made asap, said i will be seen> within 10 days cos doctor not happy with something. eek.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2006 Report Share Posted February 18, 2006 In the past patients just accepted what a physician told them and never asked questions...but now I think patients are much more educated and are prepared to ask questions about what they don't understand. Physicians should make sure their patients know what is going on, but obviously it doesn't always work that way. I see several physicians and the only one I really trust is my primary doctor...as for the rest, they are NOT good physicians....there is more to being a doctor than just being smart...if you don't have a good bedside manner that education doesn't amount to much in my book. I went for a second opinion to a pulmonologist...he told me I had IPF....he ordered a CT scan and PFT's....I had another appointment in 3 weeks....in those 3 weeks I was trying to cope with the same fears all of you have....it was terrible....when I went to see him, he said..."Well, you don't have IPF." Just like that.....he never gave a single thought to what I'd gone thru for those 3 weeks....while I was happy that I don't have this I was really shocked at how cavalier he was....when I was there the first time, he put his hand on my shoulder and told me "God Bless you." He thought I wasn't going to survive for a long time....I don't think he even remembers that!!! I also know that I am biased about physicians and nurses because that's my profession, too. But, I think they SHOULD explain things to patients, especially when you are talking about something serious like IPF. It just makes me so angry. But, I'll do what I can to at least help you guys....if I can answer a question or give you support to demand the best from your doctors, that's the least I can do. I don't have all the answers...but I'll find them if I can. And Joyce, you keep up that spirit!! You deserve the best, even if you have to demand it!!! Hugs, Diane --Diane Quinlan dianequinlan@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 thanks everyone. what i know is that my lungs are scarred... at least thats what my doctor has said. im still waiting to see a specialist about it. should be any day now, or so im told! i got myself moved to high priority because im experiansing pains in my chest and major shortness of breath. i had a meeting today with my work doctor who is treating it as work related... but not actually doing anything about it. i can only hope that when i see the specialist they can be more clear on what is going on, and more to the point, how i can fix/reduce it! is there any cures for scarred lungs or is it like scarred skin, forever thing? eek this shouldnt be happening to a 20 year old! ive never even had common cold! oh, and yes im in the UK but unfortunately my area only has one pulmonologist so not much choice there! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 What do you do in your job that they think the pulmonary fibrosis is work related? You are so young! I don't have any idea about how health care works in the UK....but I would enourage you to get all the information you need from your doctor. There is information on the internet that you can access. But, you should ask your doctor exactly what your diagnosis is and what does it mean for your prognosis. Good luck and please let us know how your visit goes. --Diane Quinlan dianequinlan@... -------------- Original message -------------- oh, and yes im in the UK but unfortunately my area only has onepulmonologist so not much choice there! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 i work in a welding shop at a car manufacturer. ill post more later, im really tired right now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Mark, You are not much older than my grandson. It breaks my heart that you are so sick. Welding cannot be really good for the lungs. Don't you use a face shield, though. It will be good once you get a definate diagnosis and get in treatment. I am on another support group with people from the UK and the healthcare system there is so different from here. There does not seem to be much choice in doctors and appointments are set up months out. Prescriptions seem to be more cost effecient and in some cases free. I guess there is good and bad to every system. Take care, Joyce>> i work in a welding shop at a car manufacturer. ill post more later,> im really tired right now.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 i wear a face shield when doing welding myself but we have several thousand welding robots in the shop which give out a LOT of smoke! i think over here waiting time depends on severity of the illness. as for perscriptions, we have a fixed cost for any perscription, i believe its about £7, been a whilst since i had any! get to have a chat with my boss tonight about it all, known my luck i will be told i cant work until further notice! time will tell again many thanks everyone, i guess its just waiting game now 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.