Re: PJ goes to Cleveland Clinic

[Guest guest]

Hi PJ,My first doctor thought I had bronchiolitis 'non-recovering' and he was at National Jewish Hospital in Denver where I went approx. 12 weeks after the worst episode breathing in my entire life (and they say you have to wait in Canada - but that's another issue). My regular doctor had me on Advair and I got thrush so be careful to really brush your teeth and do all the oral hygiene really well on that stuff. The NJ doctor put me on the Flo Vent at the same dose you are getting and it really helped and I tolerated it well. It sounds to me like the doctor you are seeing is being very practical. What happened that caused you to seek care? From a lot of what I read a lot of people do not seek care at the earlier onset of the disease but sometimes it effects our lives in ways that does cause us to get it diagnosed

earlier. I know how you feel as I have only had this diagnosis for a year and honestly thought he made a mistake for a year so am only now dealing with it in an honest way. I personally plan to learn and know as much as I can about it so I can communicate in a way to help them help me better. I WILL make my own decisions about my care as well and suffer the consequences of those decisions with grace. I want to help them learn as much as they can about this disease but will make them treat me as a PERSON, not a patient and certainly not a lab rat. For me personally I had pulmonary function tests done a couple years before diagnosis (maybe it was missed then or maybe I was a hypocondriac at that point but it was good either way) and still my PFT's are nearly the same as they were then (2004). So, get through this initial testing, treat the stuff that makes sense (GERD I think makes sense to get under control -

stomach acid can eat through metal in short time frame) and do things to reduce your stress and enhance your health. I love movement like Yoga, acupuncture and meditation. Hopefully you can recover some of your function (I have recovered a lot of my diffusion capacity but not my volumes which is fine as I can manage on the volumes I have quite nicely thank you). I just wanted to share this with you that the stories on the internet by the medical facilities paint a very bleak story indeed but I am basically the same as I was a few years before I had the bad episode. The only difference is that I saw someone and now have a label but basically I feel the same as I did. I hope you too will have this experience. My thoughts and prayers are with you. My husband is supportive in a way but it is hard for them as well to contemplate losing us so getting support through an organization like this is

healthy. My husband is still in denial that anything is wrong. I hope he will be proven right and that my 'current stability' continues for the rest of my life. If not, I am so happy to be a member of this group where I can get answers, share thoughts, ideas and feel a part of a community and not so ALONE as you said.Taking it a day at a time - my new motto,Peggy E (survivor of the 24 hour test - not terrible just rather uncomfortable)Subject: PJ goes to Cleveland ClinicTo: Breathe-Support Date: Thursday, June 11, 2009, 7:55 PM

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