Saturday, June 20, 2009

Planning a trip!

My friend Lori, my daughter, and I are planning a trip to New York! It's nothing like planning a trip to lift the spirits! We're leaving July 31st on the redeye to JFK airport. We'll get there in the morning, then in the afternoon, we'll board the Carnival Triumph for a New England/Canada cruise for 5 nights. Then when we return to NY City, we'll do the NY touristy thing. We will also have to visit a quilt shop. Believe it or not, we went to a quilt shop outside of London,and we went to a fabric store in Dublin, so I know we'll have to find a quilt shop in NYC!

My daughter is really excited. She's always wanted to go to NY. I'm so proud of her. She decided all on her own, that she didn't want to sit around for the summer being bored. She signed up for an ROP class, and is volunteering at a hospital 6 hours a day. She seems to be really enjoying it.

Saturday, June 13, 2009

Positive thinking

OK, I've spent enough time feeling sorry for myself. I am now ready to get on with my life. I am determined to get healthier. I don't know exactly what to do, but I know good nutrition, excersize and good attitude will go a long way. I am sad I may not live a long life, but I'm thankful for the 57 years I've had, and I'm sure I'll have a few more years anyway. I don't know if I'll be able to continue to donate blood to the blood bank. I am getting close to my goal of 10 gallons. I hope I can still make it. And leaving my husband and kids are the unthinkable part. I try to put that out of my mind. It just makes me too sad.

I've been trying to de-clutter the house a bit, and it's worse than ever now. I wish I had a Goodwill store right next door so the items could be sent out at the very moment I decide to part with them. I have a pile of clothes in a corner of my bedroom to go to Goodwill. Then I think "Maybe so and so would like this and maybe so and so would like that." Now I have to go thru it all again, and separate everything again. But I love my friends and if they would like any of my stuff, I want them to have first choise, then the rest will go to Goodwill. So that's what I'll be working on today. See you later. Have a good day.
Remember - Positive thinking!

Thursday, June 4, 2009

The results from my Lung Biopsy

Here it is in a nutshell. Research has shown that an individual’s mental attitude can add to or detract from their longevity. So, I will try to keep an optimistic outlook. I’ve had chest x-rays, CT scan, Pulmonary Function Test, Bronchoscopy, and now Lung Biopsy so I am pretty confident in the diagnosis.

I got a detailed paper from my doctor and I am summarizing information from the paper to be able to explain this to you, and to help myself understand more.

I have Pulmonary Fibrosis (PF). Literally it means lung (pulmonary) scarring (fibrosis). Mine is called Usual Interstitial Pneumonia (UIP). When the cause is not known it is called Idiopathic Pulmonary Fibrosis (IPF). The cause is unknown and there is no cure. It is estimated that 50,000 new cases are diagnosed annually. More that 200,000 people in the US suffer from the disease. There are at least 5,000,000 cases world wide. At least 45,000 die from this disease each year. A history of smoking has been associated with an increased risk of IPF. (I quit 23 years ago.) People in NYC are at greater risk due to the toxins released as a result of the twin towers in 9/11/01.

Symptoms are breathlessness and a dry hacking cough. The course of PF varies from person to person. It may progress slowly and gradually over years, or may progress rapidly. The course is generally unpredictable.

The interstitium is the tissue in the lungs between air sacs. When scarring occurs the tissue becomes thicker and the lung becomes stiff, making it more difficult for oxygen to get into the bloodstream. Scar tissue cannot be removed surgically or with medication.

For approximately 20% of population with PF, medications such as Cortisones will stabilize the disease, but there are side affects. There are anticancer drugs used for immune suppression, but there are more side affects. Other drugs have been used with variable results, or with unconfirmed effectiveness. Some people may require supplemental oxygen. So far, my oxygen levels are normal. I will be getting information on exercise training, breathing exercises, nutritional counseling, stress and depression management. The average survival rate is roughly 3 – 6 years following onset of symptoms. The overall survival rate for IPF is up to 18 years. Many new developments of effective treatments will lead to increased survival time and a better quality of life. Developing and maintaining a positive attitude will increase survival time for everyone. I told my pulmonologist that if I am going to die within 2 years I want to retire and go to Hawaii. She said no, don’t retire. But still go to Hawaii! Live my life as normally as possible. I am not telling my mom. I don’t want her to worry. She has enough to worry about.

My doctor is referring me to a study at UC Davis that will begin in July. There have not been any new studies for 2 years at UCD so this will be good timing for me. She told me there are promising results from an over-the-counter vitamin supplement that might help also. I need to wait to talk to the people doing the study to see if I can take the vitamin also.

I am feeling good. I don’t think my shortness of breath is very worrisome. I only have pain from the lung biopsy. I saw my surgeon today and he explained that they spread the ribs to get the instruments in to the lungs. My ribs are bruised and that’s why I have pain. I will be returning to work on Monday. I may only work ½ days for a while depending on how I am feeling. Thank you for your support and love.


“I am still determined to be cheerful and happy, in whatever situation I may be; for I have learned from experience that the greater part of our happiness or misery depends upon our dispositions, and not upon or circumstances.” – Martha Washington

A strong positive mental attitude will create more miracles that any wonder drug.: - Patricia Neal

“Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.” – Dale Carnegie