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I'm sorry to hear of your problems. With lung function below 30% you have the most severe stage of COPD with respiratory failure. Not only can your lungs not get enough oxygen, but they have a problem getting rid of carbon dioxide. That is why you have the feeling of not getting enough air even though you are on oxygen. It is also why you have more infections requiring IV antibiotics.
The name of the medication used in cancer patients to improve appetite is megestrol acetate (i.e. Megace®). It helps the appetite for many people. The very act of breathing for you expends many, many calories so it is important to take in as much food as you can. Many small meals a day, and/or Boost or Ensure supplements can help. You also need the extra calories to promote bone healing.
I know you said don't wnat to hear about quitting smoking even a few cigarettes a day, but every cigarette affects your breathing by decreasing lung function. It also increases carbon monoxide in the body. Smoking provides no benefit to one's health and much harm. Enough said.
Has your pulmonologist discussed long term solutions? Are you a candidate for a lung transplant? I know you aren't as long as you smoke, but have you had this discussion with him or her?
Please let me know if you have questions?
Hello again, Renea,
It is a relief to me to hear that you will be a lung transplant candidate once the smoking problem is licked, and it sounds like you are well on your way to that goal.
It saddens me that you haven't had the benefit of a good relationship with your pulmonary physician or your primary. You should have been told immediately just how grave a lung function of less than 30% is. Smoking cessation, using all tools at medicine's disposal, is one of the first steps in someone with poor lung function. How sad that you couldn't get the help you so desperately needed at the outset. I am sorry that your providers let you down.
Megace is the main drug prescribed for appetite improvement. That is actually a side effect of the drug (sort of like using Benadryl to get a good night's sleep. Benadryl is actually an antihistamine for allergies and the sleepiness is a side effect.). Nothing says it has to be Boost or Ensure if you don't like the taste. They are just easy for people to keep around. I personally abhor the taste as well. Anything you enjoy can be substituted. Making your own milkshake is fine. A scoop of protein powder from the pharmacy can't hurt.
If you like ice cream, then eat it as often as you like. Same for anything dense in calories that you like the taste of. This is one of the few times in one's life when it is good to eat whatever you want. You need the calories. Peanut butter (if you aren't allergic) is one of the highest calorie foods available, containing abuot 200 calories in just 2 tablespoons. Other nuts are also high in calories (almonds, pecans, walnuts, cashews). Dark chocolate is also good if you like sweets. Just one extra sandwich (add a slice of cheese for an extra 100 calories) a day adds 500 calories to your daily intake.
Fruit juices are higher in calories and less filling than the fruit, so it's better to drink 6-8 orange juice than to eat an orange. Pop it in the blender with orange sherbet or some vanilla ice cream if you like.
All pastas are fairly high in calories, regardless of the sauce. Whole wheat will give added fiber. Rich sauces (Alfredo, carbonara) add to the calorie load.
Among other high calorie foods are avocados, beans/legumes (not green beans), whole fat dairy, fatty fish like salmon and tuna, red meats, and potatoes. The omega-3 fatty acids in fish oils are thought to decrease inflammation and in some people improve appetite.
I'll keep my fingers crossed that you reach your goal of being smoke-free in the next week or two so you can get on the lung transplant list. Transplant is really the solution for you, since your physician is correct that the lungs are too far gone to repair themselves by the time your lung function is less than 30%.
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Talk to your insurance company and tell them exactly what you've told me. They have the duty to find you someone more competent both for your primary provider and your pulmonologist. If there is a pulmonologist associated with a medical school or large hospital center, that would be the ideal situation. I realize that you may not live near such a facility, so it may not be possible. Practitioners associated with medical schools are truly up to date on the latest and greatest, and state-supported schools also participate in more insurance programs that many for-profit hospitals do. Of course, if this doesn't work out. then it sounds like any change of provider would be for the better.
You're so very welcome.
You might be surprised at your insurance company's response to your dissatisfaction. You'll never know unless you try.
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