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 12โ18 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)
Hey Jesse! Thanks for reading my blog!
To answer your questions:
1) I am absolutely where I am supposed to be in life right now. With that said, I maintained 30% FEV1 for over 10 yrs. I was first approached for a tx in 1999. I was able to avoid tx for that amount of time and was quite proud of myself for that! I began having massive hemoptysis and my quality of life was not what I wanted it to be and I knew I was ready… So yes, I feel I did do everything I could with my 'old' lungs.
2) There is no question in my mind that my life is 100% better since my tx. I have NO limitations and that feels absolutely amazing.
Everyone has their own journey, and I never feel like I failed b/c I traded in lungs. If you know, in your heart and mind, that you are doing everything you possibly can, then that's all that really matters, I would think.
I was reading your post about tx'ees running and working out so much after tx, perhaps even spending more time doing those things than doing treatments, etc. I can tell you, I spend about 2 hrs 5 days a week running or at the gym, but I do it b/c I LOVE it, not b/c it's 'required' to maintain my lung function. Many people post tx don't workout as much and have just as good of lung function. Treatments/meds post-tx are extremely manageable in my opinion.
Take care! Be well!
Thanks so much for taking the time to comment, Sara. I'm pretty darn sure I was at 65% at 20-21, but down to 45% around 25 and I've been between 30-40% since our wedding in 2006.
It's just plain old time to kick it into high gear and see what these things will put out with special TLC. Thanks for the info on post-tx management.
did you know you can get a tax break on your food? I've been doing it for years. I had my Doc write a letter that states I am on a very high calory diet due to CF, which makes it a requirement by a doc to have special food. Hence, Tax Break. I just keep my receipts and you take the food that You need, then take 80% of that cost and its a deductable. Or maybe different for Fla, but you can ask about it.
How does that work for a family grocery budget? I eat more than half, but we can't very accurately figure out how much of it is consumed by my wife. I'm pretty sure tax breaks like that are federal, so I can ask my CPA… I'll do that now because I'd sure like a tax break on my $80 of Boost every month!
Ya, you pretty much figure if you eat 60% of the food then you take that much from your grocery bills. I save a month or 2 worth of recpt and take an average for the year. Let's face it, we pretty much eat the same things througout the year.