Guest guest Posted June 13, 2008 Report Share Posted June 13, 2008 Dear Breathe Support friends, I have been away from posting for about two weeks, although keeping up with most new info. I was fairly active as a newbie and felt a part of the fold immediately, being welcomed by Sher, Joyce, Beth, Zena, Sherry, and so many others. I am currently tapering from 60mgs on Prednisone to 40mgs and have been in a terrible funk mentally. I think I am also suffering the effects of a severe reaction to Levaquin that I took in March for "pneumonia" when I hadn't yet been diagnosed with "lung scarring" (no one has yet said PF except CT scan). I told the doctor I was allergic to Cipro, but he gave me this related drug anyway. I do go to UTSW in Dallas next Tuesday for an appt. with a Dr. Glazier, after having a terrible pulmonologist in Fort Worth. I am placing so much hope in this new doctor to get me on a treatment plan and severity of this disease. I am going to do what Gynne has done to communicate and catch up, but I hope to be be back soon in force! Gynne- I would love to meet you! You are such an inspiration and a positive influence on the rest of us. I live in Mansfield. When do you get to come home? For you to be posting here and so concerned with others speaks volumes of your character and compassion. Bruce- Thanks for being willing to talk to me. I have suddenly developed a phone-phobia and owe many people a call. I spin my wheels most of the day. My concentration is ZIP. I have read every post you make, and would still love to meet you/call you. Your intelligence and intuition are mind-boggling. How lucky we are to have you here! Sher- I know you are so anxious about your precious Zoe. You are such a strong and wise person. Please know that you are being thought about continually, and THANK YOU for the thoughtful gift! In my self-absorbed state, I never thanked you. Joyce- You helped me so much in my first weeks here. I know you are having many troubling issues and I wonder about you daily. How are you feeling? Beth- I feel like I know you through your unselfish sharing of factual and personal information. You are giving of yourself continually. To know what all you have to put up with and your "piecemeal" plan of care really opened my eyes to what others are facing. You do this all with calmness and grace. I am so happy that your recent dr. visit was so positive. You certainly deserve that! Peggy, Sherry, Zena, , Jack, , Babs, Steve- Your continual positive attitudes continue to pick me up. I am learning more how to "live" and appreciate what I do have. Jack: you are such a generous person. I would love to be going on those walking trips with you in Maine. It's so blazing hot here in Texas, I'd welcome any respite! ( PF-Apr. 2008 ,Sjogren's) age 52 Subject: Gynne's UpdateTo: Breathe-Support Date: Friday, June 13, 2008, 6:58 AM Oh, how great to hear that Gynne is getting to travel! Nice to hear how she is doing also. I'm a person that may have to consider a transplant, and love to keep tract of her input. Again, Thanks, Gynne for being so loyal to the rest of us. You gave me a great idea about using thin gloves for driving. I've had a pre-cancerous spot removed from one of my hands already. I try to use sunscreen, but I also use hand santizer all the time, so most of it gets removed. Gloves are a much better answer. Thanks! This is what we learn from each other on this board, how to LIVE with this terrible disease. I also like how you use one e-mail to respond to many people, Gynne. I seem to have many responses, but hate to do one-at-a time e-mails. Gynne, I am the person who e-mailed you who also had Dr. Rosenblatt as a doctor in the past. I hope that group is being good to you as you recover!! Sherry , Age 64 NSIP 11'98 via Open Lung Biopsy, Bronchiectasis, PBC (liver autoimmune disease), PAH 2008, Oral Lichen Planus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2008 Report Share Posted June 13, 2008 Elissa, the doctor in any treatment program is too important to put with an incompetent, uncaring medico. I learned, and had it reinforced from this group that I, as the patient, I must be proactive and control my treatment. I told my pulmo, "You are just one of my consultants." As a result I read his prescriptions very carefully. I know how to spell arsenic. Jack Gynne's UpdateTo: Breathe-Support@ yahoogroups. comDate: Friday, June 13, 2008, 6:58 AM Oh, how great to hear that Gynne is getting to travel! Nice to hear how she is doing also. I'm a person that may have to consider a transplant, and love to keep tract of her input. Again, Thanks, Gynne for being so loyal to the rest of us. You gave me a great idea about using thin gloves for driving. I've had a pre-cancerous spot removed from one of my hands already. I try to use sunscreen, but I also use hand santizer all the time, so most of it gets removed. Gloves are a much better answer. Thanks! This is what we learn from each other on this board, how to LIVE with this terrible disease. I also like how you use one e-mail to respond to many people, Gynne. I seem to have many responses, but hate to do one-at-a time e-mails. Gynne, I am the person who e-mailed you who also had Dr. Rosenblatt as a doctor in the past. I hope that group is being good to you as you recover!! Sherry , Age 64 NSIP 11'98 via Open Lung Biopsy, Bronchiectasis, PBC (liver autoimmune disease), PAH 2008, Oral Lichen Planus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2008 Report Share Posted June 13, 2008 ... a quick note before I leave for WA in the morning. We are having a gathering of some members and I'm so anxious to see them face to face! I hope with you that this new Dr. will be all you hope/expect/need. Yes, I will be anxious about Zoë until at least Wed and maybe even longer. The MRI will be done then but results take awhile. I'm so hoping we might know something though on that day. I'll be watching for your posts... MamaSher, age 69. IPF 3-06, OR.Don't fret about tomorrow, God is already there! Gynne's UpdateTo: Breathe-Support Date: Friday, June 13, 2008, 6:58 AM Oh, how great to hear that Gynne is getting to travel! Nice to hear how she is doing also. I'm a person that may have to consider a transplant, and love to keep tract of her input. Again, Thanks, Gynne for being so loyal to the rest of us. You gave me a great idea about using thin gloves for driving. I've had a pre-cancerous spot removed from one of my hands already. I try to use sunscreen, but I also use hand santizer all the time, so most of it gets removed. Gloves are a much better answer. Thanks! This is what we learn from each other on this board, how to LIVE with this terrible disease. I also like how you use one e-mail to respond to many people, Gynne. I seem to have many responses, but hate to do one-at-a time e-mails. Gynne, I am the person who e-mailed you who also had Dr. Rosenblatt as a doctor in the past. I hope that group is being good to you as you recover!! Sherry , Age 64 NSIP 11'98 via Open Lung Biopsy, Bronchiectasis, PBC (liver autoimmune disease), PAH 2008, Oral Lichen Planus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2008 Report Share Posted June 13, 2008 Jack, you make me laugh! Thanks for that!!! Hugs! Babs in Texas > > From: Sherry <sherryjohnson16@ yahoo.com> > Subject: Gynne's Update > To: Breathe-Support@ yahoogroups. com > Date: Friday, June 13, 2008, 6:58 AM > > > Oh, how great to hear that Gynne is getting to travel! Nice to hear how she is doing also. I'm a person that may have to consider a transplant, and love to keep tract of her input. Again, Thanks, Gynne for being so loyal to the rest of us. > > You gave me a great idea about using thin gloves for driving. I've had a pre-cancerous spot removed from one of my hands already. I try to use sunscreen, but I also use hand santizer all the time, so most of it gets removed. Gloves are a much better answer. Thanks! This is what we learn from each other on this board, how to LIVE with this terrible disease. > > I also like how you use one e-mail to respond to many people, Gynne. I seem to have many responses, but hate to do one-at-a time e-mails. > > Gynne, I am the person who e-mailed you who also had Dr. Rosenblatt as a doctor in the past. I hope that group is being good to you as you recover!! > > Sherry , Age 64 > NSIP 11'98 via Open Lung Biopsy, Bronchiectasis, PBC (liver autoimmune disease), PAH 2008, Oral Lichen Planus > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2008 Report Share Posted June 14, 2008 Sher, I know you are having such a good time right now. I wannted to let ya know my Kenny is going to be in Portland for two weeks. He is flying out Mon. He'll be swinging off the bridges. Scares me silly.Don't forget the pictures.. Prayin for Zoe. Love and Prayers, PeggyIPF 2004, Florida"Worry looks around, Sorry looks back, Faith looks up." Quote Link to comment Share on other sites More sharing options...
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