Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 dave sorry to hear about you colds and your frustration with one of the docs whenever i email my doc at penn, i follow it with a phone call the details are in the email the phone call means leaving a message for the nurse she usually, but not always, calls me back fairly quickly, then she contacts the pulmonary and depending on i don't know what, the nurse calls me back later that day or the next day can't email my primary, so he gets a phone call why are you going to new york for transplant eval if you live in miami? if you go on the list in ny, will you move to ny to wait? Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Hey Terre....To: Breathe-Support Date: Saturday, January 9, 2010, 8:23 PM Hey Terre, how are things?? Everything okay here. I sent all my tests, ect. to NY Pres. / Columbia for a second opinion and lung transplant evaluation. The person I spoke to said I should get an apointment in mid. Feb. I have been emailing Dr. Lederer (IPF expert at Columbia) and Dr. Sonnet (Dept. Head. of Lung transplant unit). They both seem like nice guys and I am looking forward to meeting both of them. I have been sick twice with colds, once in the Begining of Dec. and then last week. I was able to see my primary Dr., who gave me antibiotic when I was sick in Dec. felt better in 3 days, it never went to my lungs. His specialty is infectious deseases, so he suggests that whenever I get sick to let him know right away so that he can prescribe something if he thinks I need it.When I was not feeling last week my primary was away so I emailed Dr. Glassberg and explained that i was not feeling well and my primary was away. She ignored my emials for 2 1/2 days until I got a little nasty. She then called me and told me that she is not a primary Dr. and if she wanted to pursue that career she would have. She made it quite clear that she is a scientist and is not available for me when I am sick. Now that the DX came in she will only see me to discuss and examine me only if I am on one of her trials, otherwise I am to see my primary. I was a bit taken aback and wished that she made this clear to me when I first started seeing her. In any event, she could have atleast emailed me right away and told me that she could not help me. I could have gotten very sick in those 2 1/2 days.Both doctors I emailed at Columbia, emailed me back within an hour on a number of occations and they dont even know me.i should hear from long term disability insurance through Met Life this week. Thank god I purchased this insurance when I started my job 10 years ago. It pays well and I dont have to worry about jumping through the hoops with social security. I still have to apply with social security disability after i have been out of work for 6 months but what ever they pay Met Life subtracts from their payment, so if I dont get approved right away or they give me a hard time, I still get payments from Met Life.How are you feeling?? How is the trial going? I told Dr. Glassberg I will not make a decision as to whether or not to go on one of her trials until I se the Dr.'s in NY and see what they say.Talk soon and I will keep you updated,Dave UIP/IPF 11/09 Miami>> I think Bruce gave a site to meet people for hobbies, etc.. There is also a site called "Createthegood. org". You can meet people here and help out if you want. You enter your zip code and it brings up many, many, places and positions for which you can volunteer. > It's just another way to get involved with people of similar interests.> Terre, IPF, 6-09, FL> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2010 Report Share Posted January 10, 2010 Dave,You are going to NY Pres/Columbia? Why, since you live in Florida?I am going to NY Pres/Columbia in Feb too. If that is where you are going let me know your date and we might see each other there.To: Breathe-Support Sent: Sat, January 9, 2010 8:23:44 PMSubject: Hey Terre.... Hey Terre, how are things?? Everything okay here. I sent all my tests, ect. to NY Pres. / Columbia for a second opinion and lung transplant evaluation. The person I spoke to said I should get an apointment in mid. Feb. I have been emailing Dr. Lederer (IPF expert at Columbia) and Dr. Sonnet (Dept. Head. of Lung transplant unit). They both seem like nice guys and I am looking forward to meeting both of them. I have been sick twice with colds, once in the Begining of Dec. and then last week. I was able to see my primary Dr., who gave me antibiotic when I was sick in Dec. felt better in 3 days, it never went to my lungs. His specialty is infectious deseases, so he suggests that whenever I get sick to let him know right away so that he can prescribe something if he thinks I need it. When I was not feeling last week my primary was away so I emailed Dr. Glassberg and explained that i was not feeling well and my primary was away. She ignored my emials for 2 1/2 days until I got a little nasty. She then called me and told me that she is not a primary Dr. and if she wanted to pursue that career she would have. She made it quite clear that she is a scientist and is not available for me when I am sick. Now that the DX came in she will only see me to discuss and examine me only if I am on one of her trials, otherwise I am to see my primary. I was a bit taken aback and wished that she made this clear to me when I first started seeing her. In any event, she could have atleast emailed me right away and told me that she could not help me. I could have gotten very sick in those 2 1/2 days. Both doctors I emailed at Columbia, emailed me back within an hour on a number of occations and they dont even know me. i should hear from long term disability insurance through Met Life this week. Thank god I purchased this insurance when I started my job 10 years ago. It pays well and I dont have to worry about jumping through the hoops with social security. I still have to apply with social security disability after i have been out of work for 6 months but what ever they pay Met Life subtracts from their payment, so if I dont get approved right away or they give me a hard time, I still get payments from Met Life. How are you feeling?? How is the trial going? I told Dr. Glassberg I will not make a decision as to whether or not to go on one of her trials until I se the Dr.'s in NY and see what they say. Talk soon and I will keep you updated, Dave UIP/IPF 11/09 Miami > > I think Bruce gave a site to meet people for hobbies, etc.. There is also a site called "Createthegood. org". You can meet people here and help out if you want. You enter your zip code and it brings up many, many, places and positions for which you can volunteer. > It's just another way to get involved with people of similar interests. > Terre, IPF, 6-09, FL > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2010 Report Share Posted January 10, 2010 Hi Dave! Glad to see you posting again and that you're doing okay. Wow, the doctor/scientist sounds like she has a chip on her shoulders! Good thing you weren't in an emergency situation. My LTD got approved with Prudential. They too said I would need to apply for SSDI but that they had a vendor to help me out with that. C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! To: Breathe-Support Sent: Sat, January 9, 2010 5:23:44 PMSubject: Hey Terre.... Hey Terre, how are things?? Everything okay here. I sent all my tests, ect. to NY Pres. / Columbia for a second opinion and lung transplant evaluation. The person I spoke to said I should get an apointment in mid. Feb. I have been emailing Dr. Lederer (IPF expert at Columbia) and Dr. Sonnet (Dept. Head. of Lung transplant unit). They both seem like nice guys and I am looking forward to meeting both of them. I have been sick twice with colds, once in the Begining of Dec. and then last week. I was able to see my primary Dr., who gave me antibiotic when I was sick in Dec. felt better in 3 days, it never went to my lungs. His specialty is infectious deseases, so he suggests that whenever I get sick to let him know right away so that he can prescribe something if he thinks I need it.When I was not feeling last week my primary was away so I emailed Dr. Glassberg and explained that i was not feeling well and my primary was away. She ignored my emials for 2 1/2 days until I got a little nasty. She then called me and told me that she is not a primary Dr. and if she wanted to pursue that career she would have. She made it quite clear that she is a scientist and is not available for me when I am sick. Now that the DX came in she will only see me to discuss and examine me only if I am on one of her trials, otherwise I am to see my primary. I was a bit taken aback and wished that she made this clear to me when I first started seeing her. In any event, she could have atleast emailed me right away and told me that she could not help me. I could have gotten very sick in those 2 1/2 days.Both doctors I emailed at Columbia, emailed me back within an hour on a number of occations and they dont even know me.i should hear from long term disability insurance through Met Life this week. Thank god I purchased this insurance when I started my job 10 years ago. It pays well and I dont have to worry about jumping through the hoops with social security. I still have to apply with social security disability after i have been out of work for 6 months but what ever they pay Met Life subtracts from their payment, so if I dont get approved right away or they give me a hard time, I still get payments from Met Life.How are you feeling?? How is the trial going? I told Dr. Glassberg I will not make a decision as to whether or not to go on one of her trials until I se the Dr.'s in NY and see what they say.Talk soon and I will keep you updated,Dave UIP/IPF 11/09 Miami>> I think Bruce gave a site to meet people for hobbies, etc.. There is also a site called "Createthegood. org". You can meet people here and help out if you want. You enter your zip code and it brings up many, many, places and positions for which you can volunteer. > It's just another way to get involved with people of similar interests.> Terre, IPF, 6-09, FL> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2010 Report Share Posted January 11, 2010 , Yea I am pretty stable, felling okay. So damn tired all the time though. Did prudential give you a hard time? how much paperwork did you send them and did they make you go see their Dr.? Also, didthey appprove you for just a certain period and then they will want updates? Hope you a feeling good as well. Thanks, Dave > > > > I think Bruce gave a site to meet people for hobbies, etc.. There is also a site called " Createthegood. org " . You can meet people here and help out if you want. You enter your zip code and it brings up many, many, places and positions for which you can volunteer. > > It's just another way to get involved with people of similar interests. > > Terre, IPF, 6-09, FL > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2010 Report Share Posted January 11, 2010 Terre, I know what you mean about the pulse rate. When I did my 6 minute walk, after just a minute I was at 112 bpm and stayed around there for the whole test. I also need to lose about 40 lbs though and that is my next goal. Sorry to hear that you going through the sinus infections. Its always someting. One thing a can say is that I feel back to to where I was before my VATS, pain gone and it did not seem to effect me much. The area is a little numb is spots, I guess from cutting through the nerves. I am guessing since I am only 43 I was able to bounce back quicker, who knows. I will keep you posted as to what is going on. Dave > > > > > > I think Bruce gave a site to meet people for hobbies, etc.. There is also a site called " Createthegood. org " . You can meet people here and help out if you want. You enter your zip code and it brings up many, many, places and positions for which you can volunteer. > > > It's just another way to get involved with people of similar interests. > > > Terre, IPF, 6-09, FL > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Dave, It's interesting to hear about another side of Dr. Glassberg. I had noticed that there wasn't good followup with her after my biopsy, but put it off to her busy schedule and my impending evaluation with her for a trial. This is causing me to reevaluate my relationship with her. I'll see what she has in mind for a trial sfter I get rid of the sinus infection. I feel that I should do a trial to help out. It's kind of weird because I asked her specifically if I should get a Pulmo. near Delray Beach and she said, no you are close enough to get here if you have a problem. She said that she would advise someone older or not able to get around to get a local Pulmo. to work with her. It'll all work out in the end because I won't go without a Pulmo. to treat me when needed. Keep in touch. Terre, IPF< 6-08, FL > > > > > > > > I think Bruce gave a site to meet people for hobbies, etc.. There is also a site called " Createthegood. org " . You can meet people here and help out if you want. You enter your zip code and it brings up many, many, places and positions for which you can volunteer. > > > > It's just another way to get involved with people of similar interests. > > > > Terre, IPF, 6-09, FL > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2010 Report Share Posted January 15, 2010 Hi Dave, All I had to do is fill out a one page application and my pulmo doctor completed and signed his statement to them. As for a return to work date we left it blank because my doctor stated it is impossible to know the answer to that and they accepted it. C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! To: Breathe-Support Sent: Mon, January 11, 2010 12:42:40 PMSubject: Re: Hey Terre.... ,Yea I am pretty stable, felling okay. So damn tired all the time though. Did prudential give you a hard time? how much paperwork did you send them and did they make you go see their Dr.? Also, didthey appprove you for just a certain period and then they will want updates? Hope you a feeling good as well.Thanks, Dave> >> > I think Bruce gave a site to meet people for hobbies, etc.. There is also a site called "Createthegood. org". You can meet people here and help out if you want. You enter your zip code and it brings up many, many, places and positions for which you can volunteer. > > It's just another way to get involved with people of similar interests.> > Terre, IPF, 6-09, FL> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2010 Report Share Posted January 16, 2010 , I got my approval too on friday. My Dr. also put no return date unless a get a transplant and then get re-evaluated. So that is one thing off my mine. I also get insurance from my job until I am 65. So at 43 if I last that long I will be in good shape. Dave > > > > > > I think Bruce gave a site to meet people for hobbies, etc... There is also a site called " Createthegood. org " . You can meet people here and help out if you want. You enter your zip code and it brings up many, many, places and positions for which you can volunteer. > > > It's just another way to get involved with people of similar interests. > > > Terre, IPF, 6-09, FL > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2010 Report Share Posted January 16, 2010 , I got my approval too on friday. My Dr. also put no return date unless a get a transplant and then get re-evaluated. So that is one thing off my mine. I also get insurance from my job until I am 65. So at 43 if I last that long I will be in good shape. Dave > > > > > > I think Bruce gave a site to meet people for hobbies, etc... There is also a site called " Createthegood. org " . You can meet people here and help out if you want. You enter your zip code and it brings up many, many, places and positions for which you can volunteer. > > > It's just another way to get involved with people of similar interests. > > > Terre, IPF, 6-09, FL > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2010 Report Share Posted January 16, 2010 Me too, my employer still pays for my health insurance and I pay the same monthly premium I paid while working. I was thrilled when I heard that news! She said when you're on LTD you're still considered an employee so you get health insurance coverage until you're eligible for the State employees retirement, which would be age 65 for me too. I am so thankful. C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! To: Breathe-Support Sent: Sat, January 16, 2010 2:36:39 PMSubject: Re: Hey Terre.... ,I got my approval too on friday. My Dr. also put no return date unless a get a transplant and then get re-evaluated. So that is one thing off my mine. I also get insurance from my job until I am 65. So at 43 if I last that long I will be in good shape.Dave> > >> > > I think Bruce gave a site to meet people for hobbies, etc.... There is also a site called "Createthegood. org". You can meet people here and help out if you want. You enter your zip code and it brings up many, many, places and positions for which you can volunteer. > > > It's just another way to get involved with people of similar interests.> > > Terre, IPF, 6-09, FL> > >> >> 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.