Day 22 and 23 (I am not good at this everyday thing)

Adam has been in the hospital for two weeks now and today he gets to go home! It feels like it's been a long two weeks and I am so ready to take my swedish pea home! I some how got stuck at work though so I won't be able to go home with him! =( But it will be nice to sleep in our own bed tonight and eat food that isn't hospital food. I hope we won't have to be back anytime soon! Don't get me wrong, I do enjoy the staff and hanging out with them but I think we are both ready to get out and start enjoying the summer!

Tomorrow is the U2 concert and I know Adam is pretty excited about it. I just hope it doesn't rain on us! I don't want him to get sick after just getting out of the hospital! Anyway..hope everyone had a great weekend!

CF Fact:

Respiratory system complications
Bronchiectasis. Cystic fibrosis is one of the leading causes of bronchiectasis, a condition in which damaged airways widen and become flabby and scarred.


Chronic infections. Thick mucus in the lungs and sinuses provide an excellent breeding ground for bacteria. Most people with cystic fibrosis have almost constant infections in their lungs and sinuses.


Collapsed lung. Repeated lung infections damage the lungs, making it more likely for the lung to collapse.


Nasal polyps. Because the lining inside the nose is inflamed and swollen, it's more likely to develop large or multiple polyps — soft, fleshy growths inside your nose.


Respiratory failure. Over time, cystic fibrosis can damage lung tissue so badly that it won't work anymore. Lung function typically worsens gradually, and it eventually can become life-threatening.

Great Strides 2011 (Day 20 and 21)

Great Strides 2011: A success!! =)

Today was a great and tiring day! It was so much fun to get together with friends and family and do something good for such a wonderful cause. I wish Adam could have been there but we Skyped with him for a minute so he could say hi to everyone. We walked around SLC this morning and we lucked out with beautiful weather! 

I want to thank all of my wonderful family and friends that came and walked with me! It meant a lot to me! I also want to thank my family for all the work they did on the shirts! They came out great! =) I can't wait for next year and hopefully there will be some more advances in CF research by then! 

Here are some pictures:

Day 18 and 19

Adam's surgery went pretty well. He wasn't in surgery very long. It was probably only a half an hour from when the nurse called me and told me he was taking him back to when Adam's doctor called me and told me they were done. I hope that this will help him a little bit to breathe better. The one thing I was happy about was that he wasn't all that grumpy this time. In the past he's been pretty grumpy after surgery but I think they controlled his pain pretty well. He even let me get stuff for him and take care of him which was a shocker to me. Again he hasn't really let me do anything in the past. I am glad they were able to keep him out of pain for the most part. He only needed to take Loratab once and the rest of the time he's been taking Tylenol. I hope now he can get back on track and continue to get well. I hope that his PFT's will go up at the beginning of the week. He did his PFT's the day after and they did go up a little bit so that made me feel a little better. It would be nice if they at least got to where they were before he came in the hospital. Anyway...hope everyone is having a good week. I hope this weather gets a little bit better before Saturday! =) 


Fact:
Lung transplantation is considered when lung function declines to the point where assistance from mechanical devices is required or patient survival is threatened. This point typically occurs when lung function declines to approx 20 to 30 percent, however there is a small time frame when transplantation is feasible as the patient must be healthy enough to endure the procedure.


P.S. Saturday is the Great Strides walk! I am super excited! We have a great team! 

Day 17 of CF info

Adam did some PFT's today and this time they went up a little!! Wahoo! That makes me feel so much better with him going into surgery tomorrow. His ENT is going to call me tomorrow after his surgery! I thought that that was very nice of him since I will be working. I would also appreciate prayers being sent Adam's way! I am sure it will go well as usual. I am just glad that we are almost out of here. I think we are both getting kind of antsy. I will update tomorrow about his surgery! 


The common cold to most is not a big deal. A cold to someone with CF could make for a long stint in the hospital. Hopefully we are able to get our lung functions back to where they were before the cold, but with CF there are no guarantees! If you are sick and know someone with CF, stay away until you are better.

How frustrating! (Day 15 and 16)

Being a CF wife is still pretty new to me but I am learning how extremely frustrating it is. Adam had his week 1 PFT's today and they stayed the same! I mean they didn't go up and they didn't go down. I just thought it was weird for them to stay exactly the same. He also had a meeting with his ENT to set up a day for sinus surgery. So he will be having surgery on Wednesday morning. This won't give him a lot of room to improve on his PFT's because they usually go easy on him after surgery. I hope that he will be able to go up on his final PFT's not leave at worse than what he was at a couple months ago. Last time this happened the docs didn't make him stay in the hospital. Although the docs really wanted him to stay, he talked them into letting him go and coming back in the weeks following to do more PFT's to see that surgery held him back from going up. 


I guess he will do PFT's again before surgery just to see if they can improve in the next day. I am not sure if they will but I am beginning to learn to not expect anything with this disease. Oh man. I can't even imagine how frustrating this is for Adam and others that have it. I hate to watch him work so hard and not have any results. 


Anyway..sorry that was my little rant for the evening. 


Here is my fact for the past two days...

What is Burkholderia cepacia complex? (Burk-HOLD-er-ia Sa-PAY-shah)

Burkholderia cepacia complex (B. cepacia) consists of several species of bacteria that are found in the natural environment. Some of these species threaten the health of people with cystic fibrosis (CF).

It is important to note that — in general — the species that grow in the lungs of people with CF differ from most of those found in the natural environment. However, all species of B. cepacia have been recovered from the sputum of people with CF. These bacteria were only first reported in people with CF in the 1970s.

B. cepacia bacteria are resistant to many antibiotics, which makes them difficult to treat once they infect the lungs. However, some species may be successfully treated with combinations of antibiotics.

Standard infection control practices reduce the risk of infection. B. cepacia poses very little medical risks to healthy people. However, some people who have a serious illness (e.g., cancer, AIDS) may be at risk of an infection with this germ.

Day 14 of CF info

Today was the Ogden Great Strides walk and it was awesome. I walked with my dear friend Lannea! Emily and Katie came with me and we had a great time. The park that we walked on was absolutely gorgeous! I loved it. 

People with cystic fibrosis are prone to frequent bouts of pneumonia and other lung infections. This is because bacteria become easily trapped in the sticky mucus that blocks the airways. Airway clearance devices and preventive maintenance medications are typically used to avoid infection. Such methods include inhaled antibiotics, bronchodilators, aerosolized medications, and chest physiotherapy.

Day 10, 11, and 12

So I tried to post a blog last night and it wouldn't let me and I've been busy with work and such that I haven't posted the last couple days. Also, Adam got admitted into the hospital on Monday. It was a little unexpected but Adam went to do PFT's and they weren't as good as they have been. So the doc thought it would be a good idea for him to come in.  Now we have moved in to the hospital for two weeks of fun filled activities such as 8:30 rehabs, not so comfortable beds, room service, meal at the cafeteria and Primary's, annoying machines, treatments, and so on. The first couple days have been a little rough for Adam. He has to take an antibiotic that makes him nauseous and wasn't really moving any junk out of his lungs. But I think he might be over that hump and will hopefully start feeling better. I am kind of bummed that he is here and is going to miss the Great Strides walk next Saturday but luckily he gets out the day before the U2 concert. I would probably have to smuggle him out for that since we've been waiting for this concert for a year and they were not cheap tickets. 


We are accepting visitors as well. So if anyone would like to come and see Adam you can call either one of us and let us know. Adam's parents came up last night and we watched the movie, Coraline. It was kind of a creepy movie but it was nice to have some visitors. Also, our neighbors, the Glissmeyer's made us BLT's! They were delicious and we are looking forward to their visit later tomorrow. =)


Anyway...here are some facts about CF since I missed a couple days.


 People with CF often develop clubbing of their fingers and toes due to the effects of chronic illness and low oxygen in their tissues. 

In 1955, children with CF were not expected to live long enough to attend grade school. Today, the median predicted age of survival for someone with CF is 37 years (38 according to some sources). This means that half will live to be at least 37 years old and half will NOT. That number is constantly on the rise. Although the outlook for people with CF is improving, THERE IS NO CURE.

Day 13

Happy Friday the 13th! 

Today was a great day!

My friend Nikki got baptized into the LDS faith! 

I am super excited about it!

She gave a beautiful testimony that made me cry.

She is going to be going on such a wonderful journey! 

♥

CF News:

http://news.yahoo.com/s/livescience/20110512/sc_livescience/teendiscoverspromisingcysticfibrosistreatment

This is pretty big! I hope something comes of it! =) 

Also, tomorrow is the CF walk in Ogden! I am pretty excited about that as well!

Hope everyone has a great weekend! 

Day 9

Diabetes is a very common complication that develops over time in many people with cystic fibrosis. In fact, most adults living with CF have some degree of diabetes or glucose intolerance. CF related diabetes (CFRD) is a unique type of diabetes that only people with cystic fibrosis can get. CFRD is similar to, but not the same as, diabetes in people who do not have cystic fibrosis.

Day 8

Infertility affects both men and women. At least 97% of men with cystic fibrosis are infertile, but not sterile and can have children with assisted reproductive techniques. Some women have fertility difficulties due to thickened cervical mucus or malnutrition. In severe cases, malnutrition disrupts ovulation and causes amenorrhea.

Mother's Day!

Happy Mother's Day to my wonderful mom, my godmother, grandmothers, aunts, cousins, mother-in-law, sisters-in-law, my friends and family who are mothers, my friends and family that are soon to be mothers, my friends and family that may not be mothers but some day will be, and the women in my life who have been motherly to me! ♥ You all hold a very special place in my heart! I hope you have a wonderful day today!


Yesterday was a great day! My sweet hubby surprised me with an orchid and some chocolates. He said even though I am not a mother or soon to be one, I am still going to be the mother of his children and he wanted to do something special for me. It was really one of the sweetest things he's ever done! =) I love that he is excited to be a father some day. Hopefully I remember to do something for him on Father's Day!


Anyway..after that we went to Ogden to spend time with my mom and my godmother. Adam and I made BLT's. He made the bacon and I cut up the tomatoes and lettuce. They were mighty delicious BLT's! Have I mentioned that I love bacon as of recently and it is all Adam's fault. Then, after dinner we decided to watch King's Speech. We had all been wanting to see it so I am glad we picked that movie. It was a great movie. I know I would watch it again! It was so nice to spend some time with my moms! =) 


Today we are going over to Adam's parents to spend Mother's Day with his mom and the rest of the family! 

Day 7

Symptoms of Cystic Fibrosis

People with CF can have a variety of symptoms, including:

very salty-tasting skin

persistent coughing, at times with phlegm;

frequent lung infections;

wheezing or shortness of breath;

poor growth/weight gain in spite of a good appetite; and

frequent greasy, bulky stools or difficulty in bowel movements.

(From the CFF website)

Day 5 and 6!

I missed yesterday! Oops! It was kind of a long day. Hope everyone had a great Cinco de Mayo. We went to my BFAW's (best friend at work) graduation from nursing school! It was a great graduation! I almost cried! Haha. She has work really hard and I was really proud of her! =) Then Adam and I went to Del Taco and had some 29 cent tacos! It was awesome!

Anyway.... here is my fact about CF for the day!! One way to clear the airway!

Clearing the Airways

People with cystic fibrosis do airway clearance techniques (ACT) to loosen and get rid of the mucus from the lungs. Clearing mucus helps to reduce the severity of lung infections and improve lung function.

Some airway clearance techniques require help from family members, friends or therapists. Adults with cystic fibrosis can do many airway clearance techniques themselves.

One technique is called “postural drainage and percussion.” People with cystic fibrosis sit, stand or lie in a position that will help free up mucus as their chest and back are pounded or clapped. Sometimes a patient will use a mechanical “vest,” or blow into a device that shakes the mucus loose, to help clear their airways.

Day 4 of CF information and other stuff!

Statistics

• About 1,000 new cases of cystic fibrosis are diagnosed each year.
• More than 70% of patients are diagnosed by age two.
• More than 45% of the CF patient population is age 18 or older.
• The predicted median age of survival for a person with CF is in the mid-30s.

(From the CFF website, visit cff.org for more information)

On another note, I am probably going to pass both of my classes this semester! I am super happy! =) ♥ 

Day 3 of cystic fibrosis information

Cystic fibrosis is a recessive disorder, which means that both parents must pass on the defective gene for any of their children to get the disease. If a child inherits only one copy of the faulty gene, he or she will be a carrier. Carriers don't actually have the disease, but they can pass it on to their children. About five percent of Caucasians (one in 28) are believed to carry the gene.

ETSY SHOP!!

A while ago I posted a blog about creating a CF etsy shop! My mother-in-law and I have been working hard on this site for a couple months!

And guess what! 

We are finally ready to advertise it! 

So here is the link!




http://www.etsy.com/shop/SouthcastleCause


Please check it out! Some proceeds will go to the Cystic Fibrosis Foundation! Please help us to make CF stand for Cure Found! 


Also, let me know if there is anything you would like to see. =) 

Wahoo!! I can't believe they actually found him!

Sources: Al-Qaida head bin Laden dead - ksl.com

This day will go down in history as another U.S. victory!

May and CF!

May is the month for Cystic Fibrosis Awareness! So this month I am going to post something about Cystic Fibrosis every day! I know I don't have it but I have so many loved ones that are affected by it and I want to do my part in making sure there is a cure found.

So today I am going to talk about what CF is and how I learned about CF.

What CF is:

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:



clogs the lungs and leads to life-threatening lung infections; and


obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. -cff.org

How I learned about it:

I started working at the U Hospital in July of 2007. I didn't know anything about CF when I first started. I honestly had never heard of it until then.I wasn't sure what to think of this disease, all I knew was that they coughed alot and spit up stuff. I was a little afraid of it at first and kind of grossed out to be honest. It was interesting to watch them hook up to this vest thing that shakes them and use nebulizers to inhale different medications. This was a whole new world to me. I was used to changing adult diapers and dealing with people who have Alzhiemer's. I would have never expected to be so involved and have my life change so much.