Intro

[Guest guest]

My name is . I was a member several years ago but got too busy with my life to keep up with all the posts. I felt it was now time to share how my life has changed. My pulmonary fibrosis was caused by formaldehyde poisoning. I was exposed to a low level for about a year (in my home) before I got sick enough to warrant an open lung biopsy and death sentence (pulmonogist, cardiologist, and surgeon). I was 57 at the time. My blood antigens to formaldehyde were 350% above normal safe limits. However, my hubby did enough detective work to locate the source and have it removed to I was spared further exposure. At the time of my open lung biopsy, I had only 32% oxygen diffusion and only 40% lung volume. I was on 6LPM 02. The MDs told my husband that he should expect me to die within a year. At that time, we lived at an elevation of 4800'. Through

diet and breathing exercises, I was able to reduce my supplemental 02 to 3LPM after 2 years...much to the astonishment of all the MDs. (This did necessitate eating raw grass fed beef and raw dairy from free-ranging animals for about 6 months. I later learned that it was the CLA in grass fed animals and products that did this!) My 02 diffusion had gradually increased from 32% to 52% (where it has stayed) and my lung volume increased by 20% (from 40%-60%). I have had no changes in the past 2 years. However, we moved to an elevation of 900' so I do not need supplemental 02...as long as I don't go above 2000' elevation. I have spent the last 2 years focusing on exercise and trying to lose the weight I gained when I was sick. I still cannot do traditional aerobic exercise (65%+) of my MHR. Nor can I even walk for more than about 20 minutes at a time. However, I have increased my LBM and lowered my

BF% doing weight-training using hand weights. Once my capacity to lift hand weights had maxed out (8#), I began focusing on using yoga to increase my strength. Progress was very slow and I often wondered if it was worth the effort as I had to master the low push-up in sun salutations! After several months, I was astounded to realize that my cardio-pulmonary endurance had increased. I must still move slowly and rest after every sun salutation....taking more than one breath for each move within the sun salutation and between sun salutations...but I can actually now do a low push-up (at 61 years of age!). I also invested in a good rebounder (aka...trampoline). Just bouncing for about 20 minutes a day has mades a huge difference even though my feet never leave the mat! Now, keep in mind as you read all this, I still have only 52% oxygen diffusion and only 60% lung volume. Even my

new pulmonologist did not believe I had been near death's door until he saw the CAT scan taken immediately before my lung biopsy and read the surgeon's report! He is willing to allow me a certain freedom to do my own thing AS LONG AS I agree to call him IMMEDIATELY if I feel anything might be wrong! I had to do so when I got a simple spider bite that caused an infection in my right arm and began entering my lungs! However, I got passed that. About a month ago, I began the next leg of my journey....focusing on losing weight. I felt this was critical when I learned that many with lung disease get diabetes. After the initial LM-BF exchange from weight training, my body weight refused to budge. Finally, I chose to get a glucose monitor so that I could find out where I stood in this area. After a month of pricking my fingertips 20+ times a day and several times a night (as well as researching

the problem on the internet), I learned the CAUSE of the problem. (No one knows the WHY.) When my 02 saturation drops at night during deep sleep, my body's ability to access STORED glucose (using normal channels) is non-existent. My adrenal glands have to kick in and send out the hormone glucagon to trigger my muscles and liver to release glygocen. This causes an immediate rise in blood sugar which remains high until I do something to cause it to drop. When I should be waking up with a blood glucose reading in the low 80's, mine is about 105! From that point on, things only got worse! It has taken me a month of experimentation to learn how to bring down my blood glucose in the morning (into the 80's) and how to keep it in the 'fat-burning zone' (70-95) all day! Now I am experimenting with raising it (at dinner) just enough to allow adequate glucose in my blood during the first 4 hours of sleep and then getting up with an

alarm at 3am to take in a small meal to prevent the adrenal gland from having to intervene during the night. It seems the most likely time for such intervention is between 3am and 6am. So far, I have lost 8# in the past month. I realize that I am one of the lucky ones in that the source of the problem was discovered and removed. However, I was at death's door and only determination, hard work, and refusal to admit defeat helped me get this far. I had MANY backslides and virtually no support within my family. (My husband wanted me to 'baby' myself!) If I don't exercise for a few days, I become well aware that I have defective lungs as my old breathing problems return. Also, a spider bite almost did me in so I don't want to think what a cold or flu would do! However, I wanted to share my success so that if there is anyone in the group who that life isn't worth fighting for can know

that it is possible to have some quality of life even with pulmonary fibrosis. I don't know if what I am sharing will help anyone but I wanted to share it...just in case. __________________________________________________