My Mom (who is 58) has been diagnosed with Non-Specific
InterstitialInterstitial cystitis (ic)
Interstitial cystitis - resources
Interstitial nephritisPneumoniaAtypical pneumonia
Chickenpox, acute pneumonia - chest x-ray
Hospital-acquired pneumonia
Pneumococcal pneumonia
Pneumonia
Viral pneumonia (NIP). with leanings towards Hypersensitivity Pneumonitis. We
have hopefully taken all the steps needed to separate her from the alleged
problem (her parrots).
She was started on
Prednisone (60mg)
backBack pain - low
Back strain treatment in June 2000 and was finally
tapered to 40mg where she has been since August.
We met with a pulmonologist here in San Francisco today who stated according
to her HiRes
CTAbdominal ct scan
Ascites with ovarian cancer, ct scan
Bronchial cancer - ct scan
Cholecystitis, ct scan
Cranial ct scan
Ct scan
Ct scan of the brain
Hemangioma - ct scan
Hepatocellular cancer, ct scan
Intracerebellar hemorrhage - ct scan
Kidney and liver cysts - ct scan Scan today that there has been some mild improvements. He
was rather shocked that her regular Pulmonologist in Texas has kept her on
this much predinisone for this long. He believes that the benefits do not
outweigh the negatives she has experienced and has begun her on a tapering
schedule.
To continue to treat the NIP he is proposing starting her on either
CytoxanCytoxan
Cytoxan lyophilizedor
Imuran. I have read up on the positives and negatives of both but would
hope that I could get some practical input from someone who is or has gone
through one of these treatments.
I also brought up with the Doctors here about a
pulmonaryAcute respiratory distress syndrome
Bronchopulmonary dysplasia
Chronic obstructive pulmonary disease
Copd (chronic obstructive pulmonary disorder)
Cpr
Cpr - adult
Cpr - child (1 to 8 years old)
Cpr - infant
Disseminated tuberculosis
Hantavirus
Heart attack first aid rehabilitation
program. It hadn't been suggested by her normal specialist (and yes we are
changing). She currently lives in NM at about 4100 ft but she does so
much better on her O2 sats here at sea level that she may move in. (yikes
(grin)) Has anyone on here undergone such programs?
Thanks so much for your help.
Cary
Pulmonary rehabilitation programs have helped many with lung conditions live better, more comfortable lives with their lung conditions. There is an education component in the program which helps the patients learn more about their condition(s) and how to best manage it, as well as sharing with other patients and medical personnel. They are also monitored to be sure they are exercising an appropriate levels of exertion for their condition(s).
You might also wish to call the local branch of the American Lung Association to see if there are any support groups in your area.
As it seems you may have learned by now, high doses of prednisone, especially for extended periods of time, have very serious side effects. I'm glad that the current doctor(s) are working with you in tapering this medication.
With regard to where best to live, it has been suggested that a lengthy vacation to the proposed new location before making any dramatic plans is good. In particular, it's important to try to be in the new location during the "adverse weather" (particlarly very hot &/or very cold and/or pollens, etc.) to see how that affects the individual. It's also important to consider uprooting & leaving friends, family, medical resources, etc. & what will replace them in the new location.
I'm afraid I don't know anything about either of the other drugs you mention, but I do wish you & your family the very best. I'm sure the LungLine nurse will have more and better information.
Aloha,
Starion--thriving in HI