Re: PJ goes to Cleveland Clinic

[Guest guest]

PJ,

Wow, you had a very thorough evaluation! I'm so glad you did this...just look at all the information you have gained and will continue to gain. It is all very overwhelming and yes it is isolating. I think most everyone here understands the feelings you are having. While our families and friends love us, they don't 'get it'. They can't 'get it'. In the beginning of my journey with this illness I remember being so frustrated with the people around me....they just didn't know what to say or how to talk to me about this so most of the time they said nothing and tried to ignore what was going on. When they did engage me in conversation about my situation it was usually to make light of it and tell me how 'great' I was doing.

Three years down the road, not much has changed. Only me. I've had to lower my expectations of other people. I've grown close to alot of the people here because these are the folks that understand and I pray alot.

Keep putting one foot in front of the other, get all the testing done and figure out what to do to keep yourself as healthy as possible under the circumstances.

Consider yourself hugged!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

________________________________To: Breathe-Support Sent: Thursday, June 11, 2009 10:55:06 PMSubject: PJ goes to Cleveland ClinicI went to CCF today. Parked in the wrong garage, there for four hours, cost $10.Seen Chapman M.D. He seems to think this might be caused by Sjogren's and possibly gastric reflux with aspiration causing my problem. He looked at my CT, CXR, PFT, and has decided to increase Advair to 500/50 twice a day, and start me on Flovent puffer 220 twice a day to treat inflammation in my lungs. He wants to treat the lungs directly with steroids at this point instead of giving me a pill that would increase the possibility of systemic side effects. He has ordered a gastric emptying time and high resolution esophageal manometry. If positive result he said he will order Reglan. Also,

raise the head of the bed four inches and stop eating four hours before going to bed.He says if condition worsens despite changes he will consider FB looking for lymphocytic alveolitis to treat systemic immunosuppression.He suspects I have components of follicular bronchiolitis manifest as obstuctive impairment and chronic aspiration. Possibly lymphocytic alveolitis, but not hypersensitivity pneumonitis.He says to follow up in three months.I still have to study all the info he gave me. Thank god it is all wrote out for me. I have a lot to learn. Plus, trying to keep up with all these doctor appointments and drugs. I really can't believe how much my life has changed in the last three months. I read the posts and as much as I can find out about this disease. It just seems like I'm getting deeper in the muck!I sorta feel numb too. I can't really call it depression. And isolated too. My family and friends have been

supportive and I'm thankful, but nobody really knows how I feel.Anyways, thanks for all your input. You all are in my prayers!PJ

[Guest guest]

PJ.... gosh, I'm sorry you have so many....big word things going on. I'm glad you have family and friends for support.

I'm not knowledgeable about what you have but I read your posts.

God Bless.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

PJ goes to Cleveland Clinic

I went to CCF today. Parked in the wrong garage, there for four hours, cost $10.Seen Chapman M.D. He seems to think this might be caused by Sjogren's and possibly gastric reflux with aspiration causing my problem. He looked at my CT, CXR, PFT, and has decided to increase Advair to 500/50 twice a day, and start me on Flovent puffer 220 twice a day to treat inflammation in my lungs. He wants to treat the lungs directly with steroids at this point instead of giving me a pill that would increase the possibility of systemic side effects. He has ordered a gastric emptying time and high resolution esophageal manometry. If positive result he said he will order Reglan. Also, raise the head of the bed four inches and stop eating four hours before going to bed.He says if condition worsens despite changes he will consider FB looking for lymphocytic alveolitis to treat systemic immunosuppression.He suspects I have components of follicular bronchiolitis manifest as obstuctive impairment and chronic aspiration. Possibly lymphocytic alveolitis, but not hypersensitivity pneumonitis.He says to follow up in three months.I still have to study all the info he gave me. Thank god it is all wrote out for me. I have a lot to learn. Plus, trying to keep up with all these doctor appointments and drugs. I really can't believe how much my life has changed in the last three months. I read the posts and as much as I can find out about this disease. It just seems like I'm getting deeper in the muck!I sorta feel numb too. I can't really call it depression. And isolated too. My family and friends have been supportive and I'm thankful, but nobody really knows how I feel.Anyways, thanks for all your input. You all are in my prayers!PJ