This is the information that sparked my near-obsession with gaining weight. I somehow knew it’s the first step in getting back to a more normal life — like I had in my late teens. Beautiful began reading the CF forums almost two years ago, and found everyone saying that their pulmonary function tests (PFTs) improved with weight gain. Here I was assuming that I had better lung function back in the day simply because I was younger, but remembering that I weighed 118 back then and never got close to that ever since had me wondering if a better life was around the corner just by gaining weight.
This is my experiment. This is our life.
For the skeptics in us, we hear amazing stories of people going from the low 30′s in their PFT FEV1 numbers to 50′s, 60′s, or even higher; but we never think that can be us. It’s easier to just sit and let life take its course until you end up on the transplant list, get new lungs, and are able to run marathons. For anyone with a family, though, the whole transplant deal is a crap shoot that is really hard for them to deal with. It’s not just about you any more. While any spouse or child would rather you get a transplant to stick around for 3-10+ years longer, it’s both an immediate and a long-term risk. That and the whole nature of trading one set of issues for another with the constant care someone with transplanted organs needs. Sure, it’s a much, much better quality of life as far as breathing and activity, but the rest of your life revolves around immunosuppressants, clinic, bronchoscopies, and living close to a top-notch transplant center.
As much as doing all of your treatments sucks, it’s far safer to live life with the lungs you were born with than with a pair of foreign lungs. Besides, you’ll be doing all of the treatments involved with transplanted lungs, anyway… or you’ll die super fast. From what I’ve read from the blogs of transplanted patients, they devote as much, if not more, time to running and exercise than someone with an eFlow and Vest does. They almost become obsessed with fitness and run half and full marathons, which take hours of training every week. Sure, I’d love to run a marathon, but we’ll get to that with new lungs, bionic lungs, or cured lungs. Shoot, I’ll be a marathon runner and football star in heaven, at least. I can wait that long. After all, they say “life is short.”
How do you feel about the “your lungs vs new lungs” decision or working as hard as you can now so working hard after transplant isn’t so rough? I’d love to hear your experiences, or those of your family.
Here are the findings from one study that is a terrific read, if you can hold on to the medical terms… most of us in their 30s can by now. /grin Here is the biggest take-away from the findings for those who can’t read the jargon: for patients who lost more than 5% of their weight over the course of a year experienced a 16.5% loss in lung function.
Methods: A cohort of 3298 patients above 2 years of age was analysed. Patients were grouped according to the presence or absence of malnutrition (wasting and/or stunting). Cross sectional and longitudinal analyses over 2 and 3 years including mixed model analyses were performed.
Results: The prevalence of abnormal weight for height (<90% predicted) increased with age from 19% in children aged <6 years to 38% in adults with CF. Patients with malnutrition had significantly lower mean values of vital capacity, arterial oxygen tension (Po2), and forced expiratory volume in 1 second (FEV1) and higher serum IgG (p<0.05). Pseudomonas aeruginosa infection was also associated with decreased pulmonary function. Malnourished adolescents aged 12–18 years experienced a serious decline in FEV1 of about 20% predicted, whereas mean FEV1 values remained stable at above 80% predicted in adolescents of normal weight. Longitudinal follow up showed that malnourished patients of all ages and those with P aeruginosa infection had significantly worse lung function than their normally nourished counterparts and a greater yearly loss of FEV1 % predicted. During 1 year of observation adolescents who experienced a >5% predicted decrease in weight for height had a concomitant mean loss of FEV1 of 16.5% predicted during that year, whereas patients who gained relative weight had a parallel increase in FEV1 of 2.1% predicted.
Conclusions: These data emphasise the close relationship between nutrition, lung function, and clinical course in CF. Normal body weight and absence of P aeruginosa infection was associated with better preservation of lung function.
Source: Thorax 2002;57:596-601 (URL)


CF Fatboy is a small business owner flourishing in Tampa, FL. He and Beautiful have been married for 5 years and are doing everything they can to ensure they have a long life together.

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