I would like any information regarding treatment options, medication regimens, Doctors/Specialists regarding this condition. I am visiting Cleveland Clinic next week and also if anyone has consulted with Dr. Jeffrey Chambers and your experience there. I live in Pensacola, FL.
I am attching my daughter’s website re FM She was diagnosed in 1999 and is
doing very well. She has alot of good information on the disease because
she is a trauma nurse. If we can be of any help, feel free to contact us.
Joanne
Hi Tamijo and Tamijo’s mom,
Thanks so much for your reply! It is much appreciated. I did find the website and read your incredible story, thank you for sharing it, seems there are just a few of us. I was very concerned that maybe I should not be going to the CC in Ohio, after that story and very surprised to also learn we have nursing in common. My specialty was L&D and I now work in medical sales which requires a lot of travel and has been challenging with the incredible fatigue and shortness of breath.
I have just spoken with someone else with the condition which I connected to from the Fibrosing Mediastinitis website and the recommendations are definitely for me to seek out the opinion of Dr. Loyd at Vanderbilt University and in fact he is going to work me in sooner than previously expected.
My clinical picture is a little different as my airway is most affected right now with narrowing of the distal right lobe and developing collateral vasculature, I have had some elevated blood pressure readings and my primary has encouraged me to take BP pill however I have resisted that so far. My biggest difficulty has been with shortness of breath on exertion, even carrying laundry from one end of the house to the other. Are you still able to work? I am happy that you are able to travel that did give me hope that it isn’t all downhill…
I can be reached at 850-748-8045 if you would like to chat.
Thanks again!
Melissa
Melissa, Vanderbilt would be a better choice for sure, but check with Tami.
I forwarded your letter on to her. She lives in Oregon and I live in
Cincinnati Ohio. She is doing really well. She works in the ER doing 12 hr
shifts. She has bad days, but so far Dr. Rothman has been able to give her a
better quality of life. No one had ever put stents in a pulmonary artery
before he did. He was taking a chanceand didn’t know what would really
happen. Since then Vanderbilt has progressed and also Boston University.
If we can help you in any way, keep in touch with us. There is SO much more
hope than when Tami was first diagnosed. She can answer any questions you
have. God Bless you and Never give up.
You will be OK.
Joanne