Saturday, January 30, 2010
Friday, January 29, 2010
I pulled this cool article about Hypertonic Saline (HTS) from Cystic Fibrosis Worldwide. I thought it was an pretty interesting read and I learned some things about 7% that I had never known before. Also, keep in mind that it is an older article so some of this stuff may seem a little dated. Enjoy!!!
About Hypertonic Saline
Hypertonic Saline (HS) is just a strong salt-water solution. The concentration used is typically about 7% salt - that is, about twice as salty as seawater — although sometimes weaker or stronger concentrations are used. Hypertonic saline can be turned into a mist by a simple device called a nebuliser. The mist can then be inhaled into the lungs.
How Does Hypertonic Saline Help in CF?
When Hypertonic Saline is inhaled into the lungs, the body tries to dilute the strong salt concentration. The cells lining the airways are triggered to release water. This restores the layer of moisture lining the airways, which helps the mucus to clear the same way it does in healthy lungs. You could think of it as the lungs “flushing out” the stagnant, infected mucus.
Studies done during the mid 1990s showed that inhaling nebulised Hypertonic Saline temporarily increases the speed at which mucus is cleared from the lungs. Subsequent short-term trials showed that inhaling nebulised Hypertonic Saline on a regular basis (usually twice per day) improves lung function in PWCF.
What was the recent trial about?
Although the short-term trials were favourable, it was not known whether Hypertonic Saline is safe and effective when used for long periods. The National Hypertonic Saline Trial tested 164 stable subjects with CF aged at least 6 years of age. These subjects were randomly allocated to inhale either 4mL of Hypertonic Saline (7% saline) or 4mL of placebo (a very weak salt solution — less than one third as salty as sea water). Both solutions contained an inert substance to disguise the taste, so subjects didn’t know which solution they were inhaling. The subjects inhaled their allocated solution twice daily for 48 weeks. They kept up all their other standard therapies, and received whatever additional treatment they normally would whenever they had a flare-up. Patients were checked regularly for signs of improvement, as well as for any possible adverse effects.
What did the trial show?
The main outcome of the trial was lung function — a breathing test, which measures how well the lungs, can shift air in and out. The subjects who were inhaling the Hypertonic Saline had a modest rise in their lung function at the first measurement point (that is, after 4 weeks). This improvement was maintained until at least the last measurement point (that is, 48 weeks).
A much greater effect was seen on the flare-ups of lung infection. The subjects who were inhaling Hypertonic Saline had far fewer flare-ups. The flare-ups they did have tended to be milder, not lasting as long. Although both groups of subjects used a lot of antibiotics to try to prevent flare-ups, those inhaling Hypertonic Saline needed significantly fewer “extra” antibiotics for flare-ups.
Those subjects who were inhaling Hypertonic Saline also reported improved attendance at school, work or other usual activities. On average, those inhaling the placebo missed 17 more days of school/work than those inhaling Hypertonic Saline. People inhaling Hypertonic Saline also felt like their overall health and quality of life was better.
Were there any adverse effects?
Hypertonic Saline can cause the airways to narrow — just like they can do in asthma. In the National Hypertonic Saline Trial, all subjects took a drug to open their airways, called a bronchodilator, just before each dose. This was very effective in limiting the amount of airway narrowing. For this reason, it is strongly recommended that:
• people with CF take a bronchodilator before each dose of Hypertonic Saline and that
• people with CF are supervised when they inhale their first dose of Hypertonic Saline.
Their lung function should be measured before and after the dose, to check that the bronchodilator is strong enough to prevent significant airway narrowing.
Those subjects inhaling Hypertonic Saline also reported more coughing during and immediately after their inhalations. Thus, coughing should be expected when using Hypertonic Saline. However, the coughing tended to settle within the first few doses, the first few days, or at the most, the first few weeks. The coughing was severe enough to prevent people from using Hypertonic Saline in the longterm in only a very small number of cases. In practice, a lower concentration of saline may be more tolerable for these people.
The lungs were also assessed very closely for signs that the constant inhalation of Hypertonic Saline was causing more inflammation in the lungs. There was no evidence of this at all. Also, the use of Hypertonic Saline did not affect which bacteria were found in the lungs, nor their concentration in the mucus.
Thursday, January 28, 2010
Wednesday, January 27, 2010
I'm currently training for an Ironman 70.3 triathlon. A 1.2 mile swim, 56 mile bike ride, then 13.1 mile run. It's the best thing that could have ever happened to me. When I first started swimming, riding, and running it really sucked because I had no endurance and I got winded very quickly. It takes time and it can be painful but you will get stronger you just have to stick with it.
When I was in high school I thought the mile would be the death of me and I'd never run anything further than that in my entire life. Last September I ran a half marathon in 2:31:43, it's not the fastest time but I still beat a lot of people.
Even though we have CF we can still do anything anybody else can do our training is just going to be a little harder and we'll have to train a little longer, but we can do it. The biggest thing you have to learn is patience when it comes to endurance with exercise it takes us a little longer to build it up. Stick with exercise, it will only benefit you.
Tuesday, January 26, 2010
Monday, January 25, 2010
Here are my thoughts on all of it. Initially, it was scary. Ronnie and I talked very early on about the possibilities. We talked about the uncertainty that comes with CF, and not only death, but the hospital bouts, the good and bad days, etc. I learned early on that CF was something he felt was a blessing in his life and I would need to adopt the same perspective if this was ever going to work. I then began to think about life as a widow. As in, if Ronnie were to die in the early part of our marriage, how would that be for me. How would life look? How would I choose to move on? Would I be able to pick myself up? Would I be happy? These were all important questions for me to answer. Ronnie and I truly believe he is here for a purpose and that he has CF for a reason, and when he is done carrying out his purpose, he'll die. Ronnie has been comfortable with the thought of death and with God's plan for his life, so I knew that if I were his wife, and lost him, I would NEED to continue to have that attitude. I told him that I wouldn't marry him unless I KNEW that I could stand up the next day, put a smile on my face, and look people in the eye when telling them that Ronnie's life was just as it was supposed to be and that I trusted God's plan. So I quickly worked to get my thinking aligned with that so I knew that I could carry on Ronnie's attitude after he died. I don't know if that makes any sense, but that's where I am with all of it.
I still struggle. I cry at the thought of it. I get choked up when I think about it. I get choked up talking to others that have lost a spouse to CF. But I truly feel any amount of life with Ronnie is worth it to me. There is a huge religious aspect of this for me and Ronnie, and I'm certain that helps with my perspective. I don't know where you stand on religion, but I know that it is what really brings me peace with all of the uncertainty. I know that I'm being looked out for and watched over, so I feel as if everything that comes my way, good or bad, in sickness and in health, it is all part of a plan."
Sunday, January 24, 2010
Trip of a LIFEtimeGosh...I'm not even sure where to start. my heart is swelling with the love that was shown to us this past week, that will live with us our entire lives. There's simply too much to tell. The stories of generosity, support, and love from family and complete strangers alike. This trip far exceeded our greatest hopes and Conner's greatest dreams. Pictures really say it all, and we took, almost 900 of them on our own cameras. But the grandparent
s took more as well.
He saw whales, whales everywhere...
he saw lava...he went in a helicopter, he went swimming with the dolphins and fed them fish, he received a lei greeting, h e swam in the ocean and pools, he saw a hula show, he went to an authentic luau and saw the fire dancers, he saw his dad and mom do the hula on stage, he saw his papa attempt to blow a conk shell to start the luau, he saw what humidity does to his baby brothers hair (CRAZY!), he went in the cockpit of the hawaiian airlines plane and learned to fly, he got the pilots REAL pilos wings (not fake ones..his own real one), he saw a mongoose, he saw plenty of beautiful flowers, he saw black sand, he saw spinner dolphins and bottlenosed dolphins, he went on a whale watching cruise, he saw the entire island by helicopter, he joined the thousands of locals and travelers who write their name in the black lava with white coral rocks by writing out his name to be there for years to come, he had a Hawaiian pastor pray a healing blessing over him, he left his footprints in the crystal white hawaiian sand, he buried his dad in the sand at hapuna beach, he picked out gifts for his friends, he had time for lots of hugs and kisses for his family, he saw water as blue as he'd ever seen, he saw Gods beauty and grace everywhere, everyday, and every minute.
I can't even begin to say thank you to those who helped us get there by prayer, support, money donation and grace. Conner received over $530 from people we met on the island, when they met him and heard of his story and struggle. People were just so generous to our family. Their generosity made his wish of swimming with the dolphins come true, another persons generosity allowed him to buy the hawaiian airplane he had his heart set on, another generous gi
ft allowed us to be able to go to the authentic luau, another gift bought us meals for the airplane and tonight for dinner just the 5 of us. he was able to get and do everything he wanted. Yet he shared with his brothers and family. His heart is so generous.
There simply aren't enough words in this world to describe the way I feel about this trip. The way we all feel about this trip. How greatful I am, how I am the luckiest wo
man in the world that I was chosen to be his mother, how blessed I am to be able to hug him and kiss him whenever I want to...to know he's ours, if even for just a moment longer.
No, I'm not a dancer, but to fulfill his wish of me doing the hula in front of an audience was a no-brainer for me. I got to see him smile because of that. Who cares that I looked ridiculous. To see the smile on his face for getting to bury his daddy in the sand which he's been talking about for weeks was heart warming.
Yes he struggeled a bit to breathe, sure he wasn't feeling very well for most of the trip, and of course he missed out on some amazing island food because he was too ill to eat but oh my gosh...he did it! what an amazing journey. He got to do it! and he LIVED every minute of it to the absolute extent of his abilities. He cherished it. He loved it.
there's simply just too much to say, too many stories to share. and simply not enough time or even the words to speak it aloud...jus
t know that God was ever present on this trip, I felt him from the tips of my fingers to the tippiest of my toenails. He made this possible. He brought these amazing experiences to reality and planned them out so perfectly. because he loves us. because he's there for us. because thru all our struggl es these past years he's proven to us without any doubt that he infact, will NEVER leave us. and we, as a family will never be the same again.