Thursday, January 28, 2010

Lacking Internet...

It's super hard to keep up with a blog, and keep up the goal of at least 5 posts a week when you have no internet!!! Come to find out - my computer had like 7 viruses on it =/ Ugh! Go figure! It won't let me connect to internet and several important things won't load. I need to get this figured out!!!

I just want to write really quick with how impressed I am with my boyfriend. Spence has been out of the hospital for a month and a week. Thats the longest he's been out in over a year!!!! =D This is the best news imaginable, really. Today he got his port flushed from a home health nurse. Wow! First time ever he's had that done at home. This is such an improvement from how he's been doing. He's been doing all his treatments, taking his meds.. It's amazing. Though, I don't think he's really been exercising. This really bothers me. I hope that this will change soon. Because not only can he stay out of the hospital, but he can get his lung functions up too and go down on his oxygen =) That will be a wonderful day. The goal right now is to stay out of the hospital at least until his scheduled doctors appointment in March =) I think we can do it! Just have to get past the flu season!

This is amazing. I can't stop saying that. He was just told that he would need a liver transplant in a few years, but in order to get on the list he needed to get his health up and get some family support. We're on the right track! This is a huge encouragement for us!!!!! Maybe this will show his docs he's been trying his hardest and that he is being very complaint.

I know this has lifted my spirits ten fold!! I hope it has Spence's as well!! I am determined to fight CF and help my wonderful boyfriend life the life he's longing to live =)


Saturday, January 23, 2010

CF girlfriend

Man.. being the girlfriend of a CFer can suck sometimes. Don't get me wrong, I love my boyfriend more than anything in the world, and I'm so glad that I'm with him. But more often than not, it brings frustration that is most definitely unwanted.

The past year has been really rough on Spencer, and I as well. I don't know if it's because I'm actually living here, finally, so I'm actually experiencing what it's like to be around a CFer the majority of the time, or if it's just been a more difficult year then most. Spence has been in and out of the hospital... but way more in then out. He had 3 near-death calls in 2009 alone.
1) Hemoptysis - Severe lung bleed, he was in ICU for several days. This was the first really big call that things are very serious with his health. He got a will lined up and had some big talks with his family.
2) Pericardial effusion - fluid around the heart. That was very scary. he went into the hospital for routine stuff, his kidneys were acting up a bit, and then all of a sudden he had this fluid surrounding his heart - and A LOT of it. They had to cath it to drain it all out and it just kept building up. If I remember right he was in ICU for a little bit there too. They found out it was some kind of virus and it finally all straightened out.

(Note that for these first two I was still living in Kansas. Both events were extremely scary for me, but I wasn't there with him and so it didn't have as big of an impact on me as this third one did.)

3) Bowel obstruction. Wow this was the closest call of all. He was inches away from death here. Hearing about this from all the doctors and nurses time after time again after the fact, it makes me realize how serious this was and how close I was to losing him. He was in the hospital for a clean out, was discharged, and 2 days later landed himself in the ER due to spiked fever and severe abdominal pain. Long story short, he had a severe obstruction which caused his ammonia levels to build up to a dangerously high level. He acted out very violently and landed in the ICU, restrained and intubated for a couple weeks. He was in a drug induced coma as they tried to free the blockage that he had. I was in Utah for this and I saw him in ICU, intubated and unresponsive. This was the most sobering moment for me. Even though I knew he wasn't dead, it felt like it. It was the most scariest experience that I have ever went through. I had to travel back to Kansas during this all. After his levels dropped, from various reasons, they let him wake up and extubated him. It was so good to hear his voice. The first thing he did when he was extubated was call me. =) Turns out it was a MUCUS PLUG that was obstructing him.. and it was way high in his small intestine. -shakes head- What an experience.

With that all said - you can see how rough it's been over the past year. In and out of hospitals constantly. Battling life threating incidents to minor lung infections. This really got Spencer's outlook down - I honestly can't blame him, though. It effected mine a little bit too. But I've recovered from it all and am on the path of, well... fighting, again. I just wish I could get Spence in the same boat with me.

It's hard when only one person of the two person team is on the page. I can't do it for him, and I can't force him to do it. I would trade my lungs for his in a heartbeat, but I can't. I really wish I could get him motivated to start walking, biking, ANYTHING. I really wish I could get him to take all his meds, every day, morning and night, like habit. If only he did his treatments 100% - albuterol/pulmozyme, vest, pep, exercise.... Every single time, twice a day if not three times. I think we could have it made if this happened... But again, I can't do it for him.

I'm hopeful, I really am. I'm determined to get his PFTs up and get him to ween off the oxygen. It's going to take time, and a heck of a lot of work. But it can be done, through smiles, laughing, and even tears (and lots of them) it can, and will be done.

This year is going to be a year of not looking back at past mistakes. I'm in it for the long run, and he needs to get his mind in the same place. This year we're making some big changes. We're finding an apartment and moving in together around August of this year. Main reason - for his health... His home environment as it stands, is not a good place for him. He needs constant support and a partner to stand by his side constantly.. get up and exercise with him, just constant encouragement. He needs a better environment - and I can't be more excited. Granted some of this is more me, and my health, too - but it's mainly for him. Even though it won't be easy - I'm going to make this the best year possible =)

So despite all the frustrations and down days... I think i'm going to make the best of everything.. I just needed to talk about this past year, as it's been really rough. -deep breath- blogging really helps =) takes my mind off of some of the rougher issues.


Friday, January 22, 2010

My goal

Sooo. I have this goal for myself. I would like to make at least 5 blogs a week. I used to do a lot of writing in journals and things like that, but I don't do it anymore. It really used to help me get things off my chest and mind... So I want to start doing it again, only by doing it electronically... You know... I need to be up to date here hahaha So, 5 blogs a week (or more) and I should be good. Ready... GO! =)
<3 Nikki