Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 You have my thoughts, prayers and well wishes. Remember attitude is everything! Even on my worst days I try to keep a smile on. Doesn't make me feel better physically, but somehow it does wonders for my emotional well being. >>> dianequinlan@... 01/25/06 10:01 AM >>> I believe the email from the person who wrote about refugees was spam. They send stuff like this to all kinds of groups. Anyway, I had my PFT and chest CT done and I'm going to see the pulmonologist tomorrow. I'll get to see if there's any difference from when they were done 1 1/2 years ago. I'm so nervous to find out....I am hoping that they are not worse. Please send some positive thoughts....I really need them! How is everyone else?? It's been quiet. -- Diane Quinlan dianequinlan@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 Diane POSITIVE ENERGY COMING YOUR WAY......................... Let us know how it went. Leannedianequinlan@... wrote: I believe the email from the person who wrote about refugees was spam. They send stuff like this to all kinds of groups. Anyway, I had my PFT and chest CT done and I'm going to see the pulmonologist tomorrow. I'll get to see if there's any difference from when they were done 1 1/2 years ago. I'm so nervous to find out....I am hoping that they are not worse. Please send some positive thoughts....I really need them! How is everyone else?? It's been quiet. --Diane Quinlan dianequinlan@... Bring words and photos together (easily) with PhotoMail - it's free and works with Yahoo! Mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 Hi Diane, I know how you feel waiting for test results.. I CHOOSE to think positive about it. If I get up and see sunshine I know it's a good day. Remember attitude is such an important part of all our lives. We have to choose to live out our lives happy not with gloom and doom. You know the DR's don't know everything but my God does. Keep praying, smiling and sharing. We make our day's what they are. WOW I guess I ran my mouth. HAHA. God bless and have a Great Day. Peggy on 1/25/06 12:01 PM, dianequinlan@... at dianequinlan@... wrote: I believe the email from the person who wrote about refugees was spam. They send stuff like this to all kinds of groups. Anyway, I had my PFT and chest CT done and I'm going to see the pulmonologist tomorrow. I'll get to see if there's any difference from when they were done 1 1/2 years ago. I'm so nervous to find out....I am hoping that they are not worse. Please send some positive thoughts....I really need them! How is everyone else?? It's been quiet. -- Diane Quinlan dianequinlan@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 Absolute positive wishes and prayers from this one.................. I have only known about my condition for 8 months. I have been on a clinical trial of interferon for 9 weeks. The side effects of the drug wipe me out for the day after I take my injection. Is anyone else having this problem? Dave Wish me luck I believe the email from the person who wrote about refugees was spam. They send stuff like this to all kinds of groups. Anyway, I had my PFT and chest CT done and I'm going to see the pulmonologist tomorrow. I'll get to see if there's any difference from when they were done 1 1/2 years ago. I'm so nervous to find out....I am hoping that they are not worse. Please send some positive thoughts....I really need them! How is everyone else?? It's been quiet. --Diane Quinlan dianequinlan@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 Dave I have been on Actimmune for 2 1/2 yrs. I am not in a study so I know I have the real drug. But when I first started I would get the "flu like" symptoms--achy--chills etc but it did not last more than 12 hrs. Over time it has gotten much much better--not I get a few aches in my fingers and I get the chills. I give myself the injection just b4 bedtime and that seems to have helped. Do you take Tylenol just b4 injection? I also still get a red welt about 1 1/2 in diameter where the injection was and that lasts about 2 days. The side effects should get better with time. Good Luck Jan --------- Wish me luck I believe the email from the person who wrote about refugees was spam. They send stuff like this to all kinds of groups. Anyway, I had my PFT and chest CT done and I'm going to see the pulmonologist tomorrow. I'll get to see if there's any difference from when they were done 1 1/2 years ago. I'm so nervous to find out....I am hoping that they are not worse. Please send some positive thoughts....I really need them! How is everyone else?? It's been quiet. --Diane Quinlan dianequinlan@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 Hi Diane, Know that you're in our thoughts and prayers...and here is something to think about: REMEMBER RIGHT NOW: somebody is very proud of you. somebody is thinking of you. somebody is caring about you. somebody misses you. somebody wants to talk to you. somebody wants to be with you. somebody hopes you are not in trouble. somebody is thankful for the support you have provided. somebody wants to hold your hand. somebody hopes everything turns out all right for you. somebody wants you to be happy. somebody want you to find him/her. somebody wants to give you a gift. somebody wants to hug you. somebody thinks you ARE a gift. somebody admires your strength. somebody wants to protect you. somebody can't wait to see you. somebody loves you for who you are. somebody treasures your spirit. somebody is glad that you are their friend. somebody want to get to know you better. somebody wants to be near you. somebody wants you to know they are there for you. somebody would do anything for you. somebody wants to share their dreams with you. somebody is alive because of you. somebody needs your support. somebody will cry when they read this. somebody needs you to have faith in them. somebody trusts you. somebody hears a song that reminds them of you. -- ___________________________________________________ Have a Great day !!! Tim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 Hi, we are new to this - my husband Tom was just diagnosed. hope everything goes well for you. Wish me luck I believe the email from the person who wrote about refugees was spam. They send stuff like this to all kinds of groups. Anyway, I had my PFT and chest CT done and I'm going to see the pulmonologist tomorrow. I'll get to see if there's any difference from when they were done 1 1/2 years ago. I'm so nervous to find out....I am hoping that they are not worse. Please send some positive thoughts....I really need them! How is everyone else?? It's been quiet. --Diane Quinlan dianequinlan@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2006 Report Share Posted January 26, 2006 Jan Thanks for the reply. Over your last 2 1/2 years what has happened with the IPF? has it changed for better or worse or stayed the same? I too take my injections just b4 bed and I take Ibuprofen at supper time. I switched to Tylenol for about 1 1/2 weeks and the side effects seemed to be worse so I switched back last week. The last 3 injections have produced smaller effects and hopefully it will continue to get better. I have never noticed any spots around the injection area. I take them in the upper leg an abdomen on both sides so not have the shots in the same place over 4 injections. Even though I am in a trial with the side effects I have been getting I and my Dr. believe that I am getting the real dosage . How have you been handling the cough? I take Tussionex with codeine at night every day and that seems to keep it under control for 24 hours. What started you on Actimmune back then? Well wishes Dave Re: Wish me luck Dave I have been on Actimmune for 2 1/2 yrs. I am not in a study so I know I have the real drug. But when I first started I would get the "flu like" symptoms--achy--chills etc but it did not last more than 12 hrs. Over time it has gotten much much better--not I get a few aches in my fingers and I get the chills. I give myself the injection just b4 bedtime and that seems to have helped. Do you take Tylenol just b4 injection? I also still get a red welt about 1 1/2 in diameter where the injection was and that lasts about 2 days. The side effects should get better with time. Good Luck Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2006 Report Share Posted January 26, 2006 Dave When I started on Actimmune--I thought it was something different!! My PFT's have pretty much been stable for the last 2 yrs. And I don't have much of a cough at all--I cough once in a while but not too often. I have just won the lottery for the new drug pirfenidone--have you heard of that one? The lottery system was thru NORD (Natl Org. for Rare Diseases) it was for a compassionate use study--no placebos!!! I sent my paperwork in on Nov 18th and my name was drawn on Nov 30th!! I still cannot believe I will be getting this drug!! Although I will have to discontinue Actimmune--but since I am not in a study--if the pirfenidone does not work--I can always go back to the Actimmune. Good Luck Jan --------- Re: Wish me luck Dave I have been on Actimmune for 2 1/2 yrs. I am not in a study so I know I have the real drug. But when I first started I would get the "flu like" symptoms--achy--chills etc but it did not last more than 12 hrs. Over time it has gotten much much better--not I get a few aches in my fingers and I get the chills. I give myself the injection just b4 bedtime and that seems to have helped. Do you take Tylenol just b4 injection? I also still get a red welt about 1 1/2 in diameter where the injection was and that lasts about 2 days. The side effects should get better with time. Good Luck Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2006 Report Share Posted February 4, 2006 It is probably a good idea to get a second opinion, especially when you are dealing with something as serious as this. As how many other patients they are caring for....you should always feel that you can speak to your physician....I write questions down, so I don't forget. Yes, I know doctors are busy...but you are paying them for their service....you should not feel like they don't have time to answer your questions. I was going to a large, well know teaching hospital for my visits....but I felt like every time I saw them, they didn't remember me from the previous visit....and I'd been going for 18 months....I had a second opinion from a pulmonologist that my primary doctor recommended....he actually confirmed what the "lung center" told me, but I have a better rapport with the doctor who was my second opinion. This is someone you will have a relationship with for a long time...you need to feel comfortable to be able to ask them anything....you should be able to tell them when you are scared and what scares you....being a doctor is more than just telling you what is wrong with you....it's called bedside manner. If you don't have that with your doctor, I would encourage you to find someone else. Your time is worth just as much as the physicians time....good luck! --Diane Quinlan dianequinlan@... -------------- Original message -------------- Thanks for the support from you & everyone else out there - sometimes the information seems too overwhelming to take all in. Do you ever wonder if your DR is doing everything they can or does everyone read thru the emails & ask them about what other people are doing?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 I feel like he is very good & he seems to actually care about us. We have to travel about 4hrs to the Mayo Clinic to see him but my husband likes him so it's worth it. Kim Re: Wish me luck It is probably a good idea to get a second opinion, especially when you are dealing with something as serious as this. As how many other patients they are caring for....you should always feel that you can speak to your physician....I write questions down, so I don't forget. Yes, I know doctors are busy...but you are paying them for their service....you should not feel like they don't have time to answer your questions. I was going to a large, well know teaching hospital for my visits....but I felt like every time I saw them, they didn't remember me from the previous visit....and I'd been going for 18 months....I had a second opinion from a pulmonologist that my primary doctor recommended....he actually confirmed what the "lung center" told me, but I have a better rapport with the doctor who was my second opinion. This is someone you will have a relationship with for a long time...you need to feel comfortable to be able to ask them anything....you should be able to tell them when you are scared and what scares you....being a doctor is more than just telling you what is wrong with you....it's called bedside manner. If you don't have that with your doctor, I would encourage you to find someone else. Your time is worth just as much as the physicians time....good luck! --Diane Quinlan dianequinlan@... -------------- Original message -------------- Thanks for the support from you & everyone else out there - sometimes the information seems too overwhelming to take all in. Do you ever wonder if your DR is doing everything they can or does everyone read thru the emails & ask them about what other people are doing?? Quote Link to comment Share on other sites More sharing options...
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