Current CF drug studies

There are many new drugs for CF that are in experimental studies. One of the drugs that is in the last phase of study is , tobramycin inhalation powder (TIP). I am actually participating in this study and let me tell you the drug is great. It is the same active drug as inhaled TOBI but it does not take as long as TOBI nebs, it is quick. Since it is a powder, it takes only a few minutes to inhale and it is very simple and I think effective. Also, TOBI needs to be refrigerated so it is difficult to travel with it, but TIP is powdered so it is stored at room temp. and so it's great for traveling. So hopefully, TIP will be available for everyone soon.
Other drugs in studies:
Tobramycin Inhalation Powder (Phase III)
Aztreonam nebs (Phase III)
Denufosal nebs
Effectiveness of Pulmozyme in Infants
Effect of Simvastatin on airway inflammation (recruiting patients)
Azithromycin in patients with CF (recruiting patients)
Inhaled Sodium Pyruvate for treating CF
Hydroxychloroquine in patients with CF (recruiting patients)

King of California

King of California
This movie is about a guy, played by Michael Douglas, who is a little bit crazy and has visions/fantasies about a buried treasure. He spends all his time and energy locating this treasure. It is not your typical treasure movie. It's different. The movie is a little bit slow and I did not like it a lot, but it was okay. Michael Douglas's acting was outstanding and at times, funny. So I did enjoy many parts of the movie. My friend, who is a fan of treasure movies, loved the movie and would recommend it. So I would say it has received mixed reviews, but overall it is a decent movie. I would it give it a half thumbs up.
Other movies in theater this week:
Feast of Love
The Kingdom
Eastern Promises
Good Luck Chuck
Sydney White
The Game Plan

Oprah: In The Wrong Body: Trangenders

What does it feel like to be born in the wrong body? This was the topic of Oprah's Show on Friday. Oprah interviewed two individuals, one boy and one girl , who were born a girl and a boy, respectively.They said they knew since they were 7 or 8, very young age, that they were in the wrong body. Although they had body parts of a girl or a boy, they felt in their brain that they should be of the opposite sex. They repeatedly said they it is not like being gay, it's totally different. They talked about their experiences at school, with parents and the whole sex-change process. The surgeon who performs the sex-change operations, also a trangendor, told Oprah that she thinks that there many be a genetic factor that plays a role since the realization comes so early in childhood. It is an interesting and controversial topic. To get more information about this show, visit Oprah.com.

Oprah: "Sicko" by Michael Moore

America's failing insurance system was widely talked about this year thanks to an eyeopening documentary "Sicko" by Michael Moore. I saw this documentary few months ago and I recommend it to every American who is concerned about their health. You may think you are covered if you get sick because you have insurance, but after watching this movie you will see the reality. Oprah invited Michael Moore, a health economist from Harvard and an insurance company lobyist to have a discussion about what could be done to fix the problem about insurance companies denying care in time of need and talk about how to provide care for everyone in America like other countries such as France and Canada. Lisa Ling, an Oprah Show journalist, interviewd four people who had insurance but were denied care. These four people were dying from real severe diseases such as leukemia and the insurance companies refused to pay their bills and also refused to talk to Lisa. It is very sad, as Oprah said, that when you are the "most vulnerable" they expect you to fight these billion dollar institutions to pay your huge medical bills. Michael Moore repeatedly said, and I agree, that we can do better. Insurance companies should be non-for-profit institutions and the government should step in and do something so that all Americans are covered in time of sickness when we need the help the most. The lobbyist was in a tough position as she tried to argue by saying that we have the best medical care in America and that they don't deny all the claims, they mostly deny the ones with experimental medications. But her argument was weak as we all know that when you are fighting cancer in its last stages or any other illness, if even experimental medication will save your life then it should be given and paid for by your insurance or government. If other countries can afford it then we can work something out to afford it, too. We already pay such high premiums in insurance each month so if we paid that in taxes and got free health care for all, I think all American would be happy. Wouldn't you agree? Go to your local congress spokesperson and tell them how you feel, so legislation could be passed to make new laws for health insurance for all, Poor or rich. Tell me what you thought of the show, leave me your comments and let's keep this discussion rolling....

Mango Lassi (Smoothie)

Ingredients:
Mango Pulp or Fresh, ripe mango chopped and peeled
Ice cubes
Plain Yogurt
Sugar (optional)
Milk

Preparations:
To make about two glasses of Mango Lassi:
Place half cup of mango pulp (about one mango) and half cup of plain yogurt into a blender. Add 4-5 tbsp of sugar (add more if you like it sweeter). Add 5 tbsp of milk to the mixture. Add about a cup of ice cubes to the mixture and blend to make it a smoothie. Pour into a nice glass and enjoy with any meal.
FYI: to make other smoothies, feel free to substitute in your choice of fruit.

What is CF?

Cystic Fibrosis (CF) is a genetic disease that primarily targets the lungs. It is caused by mutations in the DNA that can be detected using genetic analysis (genetic testing). And there is no known cure for CF. A person with CF has difficulty breathing because bronchioles (little sacs in your lungs that help you breathe) are clogged with thick mucus. This thick mucus collects a ton of bacteria and makes a CF patient more susceptible to infections. For this reason, CF patients tend become sick with bacterial infections several times a year and need to go in to a hospital for a load of IV antibiotics and respiratory treatments to clear the lungs. These routine visits to the hospital for IV antibiotics and treatments are referred to as a "tune up." Just like you give your car a "tune up" by changing the oil or what not, CF patients need to get tuned up with IV antibiotics and treatments to breathe better few times a year. Thanks for the question and I hope this answers the comment.

10 Essentials You Must Have In The Hospital

Like everyone else I have so many things that I use daily at home from toothbrush to socks to lint roller. I can't possibly take everything with me to the hospital but I do have a few essentials that I take with me every time I am admitted to the hospital for CF exacerbations. These essentials make my life in the hospital a little more comfortable and bearable. I am listing the essentials that make my life a little better in the hospital and hopefully, you will make a list of your own essentials for your next CF tune up.

Ten Essentials For The Hospital:

1. Toothbrush (hospital have them, but they are poor quality)
2. Fragrant lotion (this will lighten mood; I like Jasmine scent)
3. Chocolate (extra calories and also mood enhancer)
4. Laptop (if you have one to keep you entertained since most hospital have WiFi now. PSP or other video games would also work)
5. iPod (music helps relax and don't forget your chargers both for the ipod and your phone)
6. Few pairs of Pajamas (this is if you don't like those fancy hospital gowns)
7. Feminine products (masculine ones too)
8. Air Freshner (hospital rooms tend to have a nasty smell that just lingers and the scented oil freshners that give off scent all day are the best to use since they last for awhile)
9. Flip Flops (for walking around or going to the restroom since they are easy to put on and off)
10. Snacks (just pack your favorites: pretzels, nuts, brownies, cookies, etc)

3:10 to Yuma

3:10 To YUMA
If you like Westerns or just like a lot of shooting, this is a great movie. Although I have never been into Western movies, I enjoyed watching this movie. It was exciting, good story line and Russell Crowe's acting was darn good. The characters were developed quite thoroughly as well. I would recommend it and would give it a thumbs up. What movies have you seen this week? Which ones do you recommend? Leave your recommendations as comments.

Potato Salad

Ingredients:
Boiled potatoes
half cup Diced Celery
one Diced carrots
1/4 cup Diced sweet bell pepper (red and green)
1/4 Diced green onion
Mayonnaise
1 tbsp Sour cream
Salt

Preparations:
Dice the boiled potatoes into bite size pieces in a large bowl. Add the diced celery, carrots, bell pepper and green onions to the bowl. Add 1 tbsp of sour cream and add enough mayonnaise so all the ingrediants are coated evenly with sour cream and mayonnaise. Add salt to taste. Get a bucket of fry chicken and enjoy your potato salad as a side dish. Quick, easy and very tasty. Enjoy :)

Guacomole Dip

Ingredients:
Two ripe avacados
One diced onion
One diced tomato
One lemon or lemon juice
Cilantro
One chopped jalepeno (optional)
Salt
Ground Cumin (optional)

Preparation:
Cut the avacados in half. Remove the seed from the middle using a spoon. Scoop out the avacado meat using a spoon into a large bowl. Smash the avacado with a fork into small chunks. Add the diced onion, tomato, jalepeno and cilantro into the bowl. Add salt and lemon juice to taste. Add 1 tsp of cumin for extra zing. Mix and enjoy with a bag of tortilla chips and you are sure to stack up the calories for a quick snack. Relax and Enjoy :)

Just Enjoying the Day

Although life is mostly busy and chaotic, there are times when you feel bored, alone and maybe even a little sad. This is perfectly normal. You may think that it is due to CF or other chronic illness that you have, but it happens to everyone. I had one of those days today, but I have learned to do things differently to cope with such a day. I walked to the grocery store for some dinner and then visited my aunt and uncle before returning home. I felt happier, relaxed and had a new appreciation for the day after getting out of my house. I enjoy taking walks around my neighborhood, going to a Starbucks, going to a friend's or relative's house for a quick visit or going shopping for clothes, groceries, etc. Staying in the house, dwelling on thoughts such as " my life sucks, " " this day is horrible," is not the solution. I suggest you get out of your house or call a friend and do something. Any type of activity that is fun, creative and social will keep you away from unhealthy thoughts and frustrations of those boring days when things are just slow. Be happy, healthy and enjoy the few days of summer that are left. Happy Day :)

Home Sweet Home

It's true, there is no place like home. When I am in the hospital, I constantly miss my home as I am sure most people do. I probably am not missing the walls or the rooms, but I miss my favorite foods, my bed, my bathroom, just my general things that I use and need every day. I love coming home from the hospital after a long hospital stay as I did a few days ago. I get so happy because I feel better and I get to to do things at my own space and time without any disturbances from millions of doctors, nurses, cleaning staff, etc. The first thing I do when I get home from the hospital is take a nice, long shower in my clean bathroom to relax my body and then I eat my favorite icecream: chocolate fudge with fresh strawberries, yummm!!! Coming home means to me that I am normal again and can do things that everyone else does, so it is very important for me to stay out of the hospital and stay at home as much much as possible. Oh yeh, don't forget you get the best sleep at home. I have learned that when I am in the hospital I barely get three hours of sleep at night. This lack of sleep day in and out makes me very cranky and more susceptible to infections, so it is very important for me and all other CFers to get a good night sleep every day so they can maintain their well-being. Well, all I can say is stay healhty and stay home :)

Why does hospital food smell so bad?

First of all the food that doesn't smell bad, it still gives me a stomach ache afterwards. I strongly dislike hospital food and I can't seem to get away from it as I am admitted to the hospital quite a few tims a year for rountine "tune ups." The hospital probably charges a ton of money for the nastly food; they should give me my money back. Even McDonald's taste better than the best hospital food. Anyways, my sisters and family are great when it comes to bringing my fav. foods to the hospital, but sometimes waiting on them can be frustrating. But atleast they bring me something to eat everyday so I don't starve myself in these four walls. So my advise is :be prepared to eat either nasty food or make sure someone is there to bring you food regularly to keep up the weight during the grueling treatment process. Keep eating.......