Consult at UWMC Seattle

[Guest guest]

I had my consultation at

UWMC with Dr. Ganesh Raghu, the Chief Lung Specialist at UWMC yesterday. He

spent a lot of time with me and is taking an aggressive approach. He explained (like most of you already know) that the deadly progression of

IPF is a course that can’t be pre-determined:

1) It could continue a path of slow

growing or could be slow for a time and then take a rapid decline.

2) 20% of IPF patients respond to

medications and his preferred treatment is a combination of medications: Prednisone,

Azathioprine, and Acetylcysteine. My pulmonary doctor started me already on

these medications; he said my Prednisone intake can be dropped from 40mg to

20mg.

3) 5-10% of IPF patients have pulmonary

hypertension or right-sided heart failure, which speeds the course of the

disease. To check for that the doctor

has ordered an Echocardiography. If

this turns up positive, surgery would be performed to implant a ventricular

assisted device cable to supply more blood to my heart. I guess I’ll know more

about this if I need it.

4) The

final treatment is the Lung Transplant; which I am agreeable to. He said we

will need to start preparing for this NOW and take a proactive serious approach

to it. We have lots of work to do to

make sure I am in very good health.

Most of you know the

serious danger of GERD (acid reflux). He said 90% of IPF patients who also have

GERD, developed IPF as a result of food acid aspirations, (breathing acid into

the lungs). He is going to aggressively attack this disease. I was diagnosed 8

years ago for GERD and have been on daily medication (omeprazole) to not much

relief. He has ordered a test. It’s a 24-hour esophageal pH test done on an

outpatient basis. It will measure the pH or amount of acid that flows into the

esophagus from the stomach during a 24-hour period. The equipment used in the esophageal pH test

consists of a small probe that is inserted through your nostril and positioned

near the lower esophagus. The probe is plugged into a small unit (or monitor)

worn on your belt or over your shoulder.

It will record the occurrence of symptoms and the times when you eat and

lie down. He said if I have certain

amount of reflux during that 24-hour period the medication I’ve been taking

isn’t working and I will need the surgery.. The surgical procedure is to remove

a portion of the esophagus. I am agreeable to this.

I did a 6-minute walk with

Respiratory Therapist and O2 dropped to 84-86. Climbed 3 flights of stairs and

oxygen saturation levels dropped to 80.

Did 6-min walk with O2 and oxy sats were up to 92. He ordered oxygen for exertion. He ordered blood tests today (about 6 vials)

to check for autoimmune diseases and whatever else..

Dr. Raghu did not have my

CT scans from Group Health to review and make his own diagnosis of my stage of

IPF. But his finding is Familial

Idiopathic Pulmonary Fibrosis. Familial because my brother died from respiratory

failure due to IPF; my mom was diagnosed with emphysema in 1982 and put on

oxygen and died that same year at age 56. Dr. Raghu said it’s a good

possibility it was IPF not emphysema. My dad died of lung cancer at age 76. IPF

itself is not known to be genetic but the predisposition of developing it is.

He is very concerned for my

children; they are at serious risk of developing IPF. He would like me and my children and sister to

participate in a genetic research for Familial IPF at no cost to us. The

research specialist, , is in Texas, but the data and blood samples will

be collected here and sent to her.

All-in-all I have confidence

in Dr. Raghu and his team. He assured me his goal is to do everything he can to

give me as normal a life as possible. I know it’s going to be an uphill battle,

but I am going try my hardest to make this a pro-active climb, not knowing

what’s on the other side.

C_53_IPF_5/09Washington-the-Evergreen-state