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.