Tiny Eden

Wednesday, November 5, 2008

My life as a CF Wife (ok, girlfriend)

So, it has been a while since I have written. There has been quite a bit going on lately. So many topics have crossed my mind to write about and hopefully, I will be able to cover them all (in separate blogs). My main concern right now is that you never know what you are going to get in life. Take nothing for granted. Not that there was a near death experience, but just an eye-opening experience.

Sam had surgery last Thursday and when he told the anesthesiologist that he was not feeling well, he basically dismissed it. When another doctor saw him, she knew right away that something was very wrong. So, fast forward a few hours when I get home from my clinical at the hospital, I am greeted by Sam's mom on the love seat and Sam on the couch with an oxygen mask. Just kind of laying there. In lots of pain. And the worst part was that there was nothing I could do. His cystic fibrosis was making him cough a whole lot because his oxygen levels were so low. That, on top of the pain from the surgery, was just beyond excruciating for him. This was just supposed to be a simple in and out surgery and now he was laying on the couch with an oxygen machine. It was the eeriest feeling I have ever had. Since I have started doing my clinicals, I have seen lots of people on oxygen. But they were in a hospital. They were not laying on my couch. And most of all, they were not Sam. My Sam.

I slept, and I use that term very loosely because I slept a whole whopping 5 minutes, on the love seat. Sam was sleeping across the room on the couch. The room seemed to be 20 times larger than it was, even though he was just a few feet away. I don't think I ever wanted to hug him more and never let him go than I did that nite. All I could do was watch the monitor and pray that his oxygen levels would go up. We got through Friday during the day without too many issues. I did get to catch a 30 minute cat nap. Then on Friday nite, Sam got nauseous. Really, really nauseous. He was literally begging for help and my heart just sank. I couldn't do anything but hold a trash can up to his mouth and put cool cloths on his head while he coughed up blood. Lots of blood. I wanted to cry and scream and just make it all go away.

So after I don't know how many days of not feeling like himself, he is now in the hospital for 2 weeks. He checked in yesterday. And I am home, alone, with oxygen tanks and an oxygen machine and an oxygen mask that has traces of blood splattered on it. It is just a bad reminder that Sam has CF and he is not on vacation for 2 weeks. He is in the hospital for 2 weeks with a disgusting disease that is taking advantage of him. Trying to get the best of him. Many people really don't know what to say when they ask me about him. I try to give them the sugar coated story because most people won't understand what I am talking about (although I now have my nursing buddies to chat with). Thankfully, I have befriended another CF couple through my job and they have truly been a blessing to me. They understand the ups and downs and they know all the right questions to ask and they know all the right things to say. I am grateful for them and the comfort that they provide. Definitely people I want to keep in my life for a long time. Sometimes it is hard to explain the seriousness of the disease to people and how scary it can be. But I don't have to tell them. They just know. They know what it is like to have to spend 3 hours a day doing treatments and wearing a vest that shakes all the mucus loose so it can be coughed out. They know what it is like to be out to run a quick errand and when you decide to treat yourself to ice cream, neither one of you have Ultrase enzyme pills so you can't make that wild and crazy spontaneous trip to Dairy Queen. I mean, we were just going to the bank, right? Who needs pills for that? They know what it is like to have to pack like you are going on a month long excursion when you are just going to a family gathering for 2 days. They know what it is like to have 2 entire kitchen cabinets dedicated to pills, solutions, nebulizers, syringes - it makes CVS look like amateurs. His wife knows what it is like to lie in bed and just stare and wonder and worry what tomorrow is going to bring. They know what it is like to deal with lung functions and PFT's. They know what it is like to have to get up at 3 am to start an IV bag for home IV's. They know the frustration of waking up during the middle of the nite because of dry, hacking coughing spells. They know what it is like to have to wait for cultures to come back from the lab to see if anything is growing in his lungs. I don't have to tell them. They just know.

I am sorry this is not a funny posting like my last ones, but lately, I have not felt like I have been in a funny mood. There have been plenty of people making this a whole lot easier on me. Thanks, family, nursing friends, co-workers and friends. I guess I just wanted to let everyone know how important it is to make sure that you let your significant other know how much you love and appreciate them. I hope no one else that reads this will ever have to experience the emotions that I am going through, and go through on a regular basis. Tell the people in your life that you love them and appreciate them. Appreciate your health and the health of your loved ones. Your body is yours - take care of it.

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