Annual (sort of) Frieds' Club

Sometimes it is just downright healthy to act stupid.  During the annual reunion of the Grand Island Senior High State Championship basketball team (apparently the one and only at GIHS), we do just that! 

In between skiing, tubing (all eight of us in pyramid formation), cliff jumping, face painting, dressing up and dancing at Mama Mia, and an occasional margarita, we did some fabulous bonding!  Just don't pet the dog...and if you come to a fork in the road, take it.

How I Grew A Lung in 90 Days

I am 47 and have garden variety, homozygous delta F508 CF. While it is true that I probably benefit from a helpful modifier gene or two, I am convinced that the reason I am so healthy today is that I have exercised regularly and vigorously my entire adult life. As I write this, I have rivulets of sweat dripping down my shins making tiny little puddles on the floor. My schnauzer loves it. The reason: I just completed the “Plyometrics” DVD from the P90X Home Fitness Program (have you seen the infomercials?). I am on round two of P90X now. I don’t know what the “P” stands for, but “90” is the number of days the program lasts, and “X” is for Extreme.

I’m not really endorsing P90X here. I like it because it is HARD, it is different from my usual routine, and because it is a home workout program…no germ-infested expensive gym is needed. With a few dumbbells and a chin up bar, anyone in pretty good shape can do it. For example, the DVD I just finished included about 45 minutes of jumping up and down in various ways. Imagine wearing the Vest while riding a racehorse and being the horse, all at the same time. It’s hard! But this program has changed the way I look at and do my exercise, and that is what I want to share.

I was sicker than I have ever been this winter. When my energy started drifting down, we discovered that my lung function was doing the same thing, so I did a three-week home IV treatment. Not surprisingly, except for drug allergy issues and a DVT in my arm from the PICC, I felt GREAT when it was over…for two days.

Then, as luck would have it, I caught a nasty virus, which resulted in a week in bed, followed by a week in the hospital with pneumonia, followed by ANOTHER three weeks of IV antibiotics.

Not surprisingly (to me, anyway), as soon as the line was out, I was searching for a workout program to get me back to the shape I had been in before all of this began. P90X was the way I did it, but there is a myriad of ways to get moving.

So every day, I followed the program. I exercised to the DVD’s six days a week in my garage. These were short sessions, about an hour long each

Now, here is the part that is hard to believe. Between the antibiotics and the exercise program (nothing else changed), I seem to have grown a new lobe of lung tissue! Kidding. Not really, of course. However, I am a bit of a nerd about my pulmonary function tests. I have them dating back over 20 years. When I blew for the first time this spring after finishing the exercise program (and six weeks of antibiotics, don’t forget). The volume of air I blew out in one second (FEV1) increased by 39% since the previous, and the small airway number (the FEF25-75%) improved by 70%!

I was a bit shocked by the “percent predicted” figures, having not heard those numbers in decades, so I decided it was a mistake. Maybe the norms being used were different. Maybe the machine was wrong. Then, I blew again. Same numbers. I drove home wondering how in the world scar tissue could turn into lung tissue (I’m sorry, but I still have a Pathologist sense of humor, despite retirement).

So I did what a nerd would do, and I dug out all the previous reports and compared volumes. Volumes don’t lie. Sure enough, the last time I saw numbers even close to these were in my 20’s. Did I mention that I’m 47?

Yes, this is an anecdotal story (but a true one). I did not do a randomized, double blinded, placebo controlled study demonstrating unequivocally that exercise caused my lung function to improve (although several well designed studies HAVE shown that exercise slows down decline in lung function in CF). I know that the antibiotics helped immensely. But it isn’t like I haven’t had antibiotics before…

The bottom line: You must move! It helps to push yourself a bit. Breathe hard! Cough! Repeat! If you tend to desaturate, use oxygen! It gets easier. Even though we have CF, we do show a training effect, just like everyone else. It is hard work to stay alive and well with CF. This is undeniable. But the reward is worth it.

Run, Walk and Roll

It’s a hot, summer day last August. The “world’s champion” (not really, but we thought so) Frisbee dog, my 13 year old Border Collie, Cisco, is out in the back yard chasing squirrels with his two schnauzer brothers-from-another-mother, Wiley and Jaxon. This is their favorite game, and I am watching them from my glass- enclosed office, where I am sucking on some hypertonic saline. Cisco has been the most athletic dog I have ever known…literally winning regional Frisbee catching competitions, running with me wherever and whenever I go, defying any and all attempts to contain him his entire life by either jumping fences or opening gates. I kid you not; he could star in his own television show with episode after episode of tales of his pure determination and ingenuity in fulfilling his life’s work, never letting me out of his sight.

But this day, he knows I am safe, and his focus is on the squirrel above him, taunting him from the telephone wire. Another squirrel joins the game from the edge of the yard, and the schnauzers are off like lightening, tearing across the grass at a speed I didn’t know was possible. Cisco starts to follow, and then I hear the most heart-breaking and terrifying scream emit from his mouth as he flops on his back and writhes in agony.
It takes me two nanoseconds to get to him, and less time than that to realize that he is in serious trouble. He clearly can’t move his back legs, and I can literally smell his terror in the air.

Fortunately, the boys are with me, and we get him in the car and to the vet as fast as we can. One X-ray later, we are rushing to another veterinary office, where they specialize in back surgery. I get the news there: he has ruptured a disk in his vertebral column, and he needs immediate surgery to decompress his spine. He will “likely” be able to walk again, but every second that passes decreases the chance of significant recovery.

There I am with two young and very upset kids and a dog that is like another child to me, barely looking at the price estimate. You can’t place a price on my relationship with this dog. He’s been through thick and thin with me. For thirteen years, he has always been there for me, and now I needed to be there for him, big time. I call my partner, and we decide…we’ll figure out how to pay for it later.

Days later, we take him home. The few weeks that follow are a bit of a blur. I nurse that dog like a baby. I learn how to “express” his bladder because those nerves don’t work at first. I put diapers on him, and “chucks” under him, often to no avail. I get peed on and pooped on and even nipped when he was hurting, just like old times with the boys! I even put my pillow down on the ground next to him and sleep with him at night, holding his paw and stroking him so he knows I’m there…otherwise he cries and neither of us gets any sleep. I carry him everywhere because if I leave the room for a minute, he starts yelping, “Mommy…where did you go???” in dog. Forty-three pounds of limp Border Collie is a LOT of weight to move ten times a day, and I am very appreciative of all the dead lifts I’ve done at the gym.

Then, physical therapy starts (think “ching”). I learn to “walk” him using a sling for his rear end. He gets massages, and TENS, and learns to walk on an under-water treadmill. The therapists and I actually re-teach him how to walk again by moving his back legs over and over again in a bicycle motion and flexing and extending his bad leg over and over. Then, one day at therapy, he struggles to his feet by himself and sort of pulls himself by his front paws across the room toward me as his back legs stagger and slide. He moves about 7 steps before he falls down. It definitely wasn’t pretty, but this is the first time he is able to move on his own accord and we cheer and scream for joy. I swear he’s smiling!

Winter comes, and I have probably my worst cold season ever. I’ve got a PICC line in for many, many weeks and am having other health issues recovering from a DVT in my arm. Still, Cisco and I make our daily treks around the neighborhood. There we are… I’m coughing and infusing, and my faithful boy is limping and sliding along at about the speed of a slug. Sometimes it’s not clear who is taking whom out to walk, but nothing keeps us from our daily treks.

As I write this, it is summer again, and I am happy to report that Cisco is still with us, as a much older (functionally) and much lighter and greyer version of his old self. His back hips and legs have atrophied down to the bone. He’s recovered some of his strength, but still needs assistance with his “morning constitutional” (which, by the way, is a total misnomer… It happens at all times of the day). Every morning, afternoon, and evening, Cisco and I go for our stroll around the neighborhood, him hobbling slowly but with as much dignity as he can muster with me holding up his butt with a sling. When he sees other dogs, he still growls with the best of them, and, oddly, seems to forget that he is disabled as he tries to chase them down, dragging his left leg (and me) behind him as I desperately try to keep holding the sling.

This is similar to me doing push-ups and yoga with the PICC line in (Did I mention I developed a DVT?). Anyway, the point is, you can’t keep us down. We are there for each other, and we are quite a pair! End of story.


Why am I telling this story? What in the world does it have to do with cool equipment and technology that makes life easy? Well, Cisco and I were chatting just the other day. It turns out that we are both getting rather tired of going around the same old area, the same houses, the same trees and plants. We both want to go new places, see new things, growl at new dogs. But he just doesn’t have the stamina to go too far from home.

So I made him an appointment to get fitted with a K9-cart. These are so cool! They are “wheelchairs” for dogs. You put the dog’s hindquarters in a type of sling, and they pull themselves around on wheels! He’s going to be so happy. I can’t wait to get it.

Finally, we are back to why I wanted to tell this story. I once told my partner, who was trying to convince me that long distance running may not be my best exercise option, that I had to run….well, jog. I used to run. I ran until I couldn’t anymore. Then, I started to jog. Then, the continuous jog became a jog/walk. This is where I’m at now. When I can’t do that anymore, I will walk. When that becomes too hard, I will walk very slowly. When that becomes too difficult, I guess I’ll roll (but I’ll pull myself along).

Cisco is the dog model of exactly the way I plan to do it. He used to run like the wind. He could jump tall buildings. He could open any door. He could do crossword puzzles. He was Cisco, the Wonder-Dog. Now, he drags himself around, limping after me, wherever I go. He uses mostly his front paws and stumbles and falls quite a bit, but unless there is a need to squat (as I referred to above), he gets around on his own. Not only that, but he still tries to chase the schnauzers around the yard, squeaking his ball like crazy while they wrestle. It’s becoming hard for him though. He’s decided it’s time for some assistance, and I agreed. Now we’ll roll. Well, he’ll roll. I’m still jog/walking for a while longer.

So maybe you can’t run. I bet you can walk. I even bet that some of you, who think you can’t run, can build up to a jog. Or maybe you’d be happier on a bike…or roller blades…or swimming in a pool. If you are still breathing, you can do something! Even if your breathing is labored, or you have problems with desaturation with exercise, they make some awesome portable O2 tanks these days. Not only that, but there are portable O2 saturation meters that you wear on your finger so you know how much oxygen you need! There are heart rate monitors, portable blood glucose meters, GPS devices…you name it! Check out Jerry Cahill on You Tube as he takes his oxygen tank for a run (http://www.youtube.com/watch?v=dT6aEuZKpC4). Take a cue from Cisco, and from me, and from Jerry: Keep moving, no matter how it looks, and keep squeaking your ball.

Why Exercise?

I listened to a great podcast today, Fitness Rocks, by Dr. Monte Ladner, who is a retired physician like myself.  He didn't get out for health reasons like I did, but more from a case of "burnout," and a desire to help people with health and fitness information rather than fostering reliance on medication to put a "band aid" on chronic problems resulting from poor diet and sedentary living.

I discovered this podcast about a month ago, and am ravenously listening to all of his shows, from beginning to end.  Today, I listened to one about the benefits of weight training, and how, according to one study, lifting weights regularly can actually act at a genetic level to cause skeletal muscle from older people (>60) to behave like "young" muscle.  Now THAT is cool!

I have been a weight lifter for almost 30 years now.  I didn't consciously do it, and still don't, to alter genetic expression in my skeletal muscle.  I do it because I like to feel strong, and because I know that this is one area where Cystic Fibrosis has NO say in what I can do.  The sense of control and self-confidence I get from keeping my "shell" strong goes a long way to making up for the lack of control I feel about my next sputum culture, or the inevitable decline in lung function that I see over the years.

Now, I realize that I've been altering gene expression all these years!  What a rush.

Besides the rush, here is why you should lift weights regularly if you have CF, or pretty much any other chronic disease:

You will inhibit significantly the inevitable loss of muscle mass that occurs with aging.

You will increase you basal metabolic rate

You will improve you body composition

You may improve your insulin sensitivity ( not clear with CFRD because it hasn't been studied, but very clear with standard, run-of-the-mill Type II DM, and glucose intolerance)

You will be stronger, and more able to to the basic activities of daily life with ease

You will improve self confidence, decrease anxiety and depression

You will reduce your risk of premature death from all causes

You will improve your quality of life

Why not?

Not sure how to add an exercise program including weight lifting to your regimen?  Drop me a line.

Take care,

Julie 

Why Am I Doing This?

I renamed this blog today...it is now PATHOLOGIC HEALTH.  I think it's rather catchy.  The reason, of course, is that I write about "wellness" related subjects from the perspective of one who is both a pathologist and, pathologic (i.e. there is a significant pathology named cystic fibrosis that I live with day in and day out).  Many would say I harbor other pathologies, but I'm going to ignore them.

Cystic fibrosis, for those of you who don't know, is not a friendly disease to have.  I don't want this blog to be about CF, though, so if you want to learn about my lifelong 'opportunity', go to www.CFF.org. 

Instead, I am going to write about being well, even when you are sick.  It sounds wrong, I know.  But another thing I know is that I live a healthy lifestyle and because of that (and other factors out of my control) I do extremely well living a relatively normal life with a nasty, often devastating illness.

I am a wellness coach now.  I coach people who have health problems to live the healthiest that they can.  So I will write about what comes up in my coaching world and in areas that interest me such as:

motivation

fatigue

exercise

nutrition

stress management

exercise

parenting when you are ill

weight loss/gain

exercise

meditation

antioxidants

exercise

...you get the point.

That's all for now.  Stay tuned as my son, Phoenix, and I figure out how to put videos of specific exercises for those people in the Stanford/Lucille Packard Children's Hospital Cystic Fibrosis Exercise Program into this blog.

Wellness is a Mindset

I have decided to enter the 21st century.  Today, I SKYPED for the first time!  Completely cool.  I felt like George Jetson must have felt when he first rode in his jet mobile.

Anyway, New Day Wellness needs a blog, so here it is.  Here is where I will wax prolific about how I stay healthy with Cystic Fibrosis, how it IS possible to sleep in one bed with one partner and 5 dogs, and sometimes two boys, and various other topics as they randomly occur to me.  It is a big bed.  Life is short, I say.  Fill your bed.

So today was day 45 of P90X, a home fitness program designed for lunatics.  I am determined to finish it, so I have 45 days left (hence, P90 (days)X).

When I started the program, I thought how hard can a one hour workout be?  What I didn't know was that...well I'm not going to tell you.  I think you should try it and see.  I especially would love to hear your comments about the "Plyometrics" DVD.