Long Bumpy Road…

Monday morning I took my dogs and headed down to my dads shop. It was pretty cold out so I bundled up. Even though my dad had a fire going it was still a bit chilly. Started off by doing some work for my dad. By work I mean driving the hyster around! Let me tell you I am quite the hyster driver!! Ha ha. It’s always fun to help out anyway I can down at the shop. Threw the ball for the dogs afterwards. Was sitting in a chair and things just began to feel “off”, breathing wise. I just figured I needed therapy and to warm up a bit. So I headed home sat down did my afternoon therapy, still felt a little “off”. Decided to take a nap, thought maybe I was tired from being down at the shop. Slept for a good hour and a half, woke up feeling much better! I noticed it warmed up quite a bit so I loaded my dogs back and went back down to my dads shop for some more fun. Only stayed for a couple of hours while the dogs played some more. Dinner time came, Kerry and I decided to join my parents for Chinese food. Boy did it taste good! I must have worked up a serious appetite from driving the hyster around! Ha ha. Enjoyed a nice family conversation, then we all headed home to call it at day. My lungs were still feeling good at this point, ready for more therapy but weren’t “off” like before. Sat down started in on the evening therapy routine, takes me a good three and a half to four hours to complete. Ate a bowl of ice cream and then off to bed I went.

It was about 1:30 I woke up from a dead sleep having a major coughing fit. I was coughing extremely hard. Kerry turned on the lamp I grabbed my spit cup, and started hacking junk up. As I looked down into my cup I noticed something wasn’t right. The junk I cough up is normally thick and green. This was thick and bright bright red. My lungs decided bleed instead of breathe. I stayed awake for a good hour still coughing up blood. Finally it started to tapper off, and dark red junk was coming up. Meaning the bleeding was coming to a stop. There isn’t much you can do at 2:30 in the morning. I had an appointments with my internist doctor here in Roseburg that morning. So I tried to get a few more hours of sleep before I had to get up. Alarm went off at 8:00 got up started in on my morning routine. Although the CF protocol is if you cough up blood you should hold off on your therapies for 24 hours. Coughing, and all the shaking can irritate your lungs and cause them to bleed again. With not having much lung function to begin with I made the call and went ahead and did my therapy. I am to happy to say I did not cough up anymore blood, just super thick green junk.

After I finished therapy and jumped in the shower, got ready for the day. Went out double checked my car to make sure I had enough oxygen to get me to town and back. I had a feeling I would at the doctors for quiet awhile. Got everything situated and off I went.

I immediately told Dr. Jones what had happened early this morning. Without missing a beat she was on the phone to Dr. Chakraborty (my pulmonolgist here in Roseburg), who in return immediately called Dr. Gold my CF doctor at OHSU to come up with a game plan. First on the list were several CT scans of my chest and lungs to make sure pneumonia wasn’t trying to come back. That came back negative. CT scans showed lots of scarring in my lungs and lots of “junk” build up on both side, but more so on the left then the right. Next up was to give a gallon of blood. Well, not really but it always feels like it. While I waited for Dr. Chakraborty to get my Ct and lab results I went on home. I was beyond pooped. My chest was getting super tight, and my shortness of breathe was increasing. As I walked in the door my two furry children greeted me, always makes you feel good! :). Put on my sweats grabbed my first neb sat down to start “puffing” away and my phone rings. It was Dr. Chakraborty calling with results and the game plan. He said the CT showed no pneumonia, but lots of infection pockets, and my white blood cell count was through the roof! Both he and Dr. Gold concluded I ended to be under hospital watch, especially since I had coughed up blood. So I finished up my neb treatment packed a bag, and off to the hospital I went. We checked in around 6:30 or so.

For now the game plan is to figure out why my white blood cell count is sky high. Obviously I have an infection going on in my lungs, but why? I was just here a little over two weeks ago! Right now they (my team of doctors) think the culprit is my sinuses. I’ve always had trouble with my sinuses, I’ve had to under five sinus surgies in my lifetime. The doctors think I am starting to colonize bacteria pockets in my nose, and it is making its way down into my lungs. Originally I was suppose to see my ENT doctor next week but that won’t be happening. Hopefully he can make an in house call, and we can come up with a game plan to tackle these old sinuses head on!! Let’s do this! I will remain at Mercy for now, unless I cough up blood again. If I do, I will be shipped north to OHSU. For now I am on around the clock iv’s, chest therapies, and steroids. The steroids will help with the inflammation, and to get this old airbags to open up!

So as day one comes to a close, I feel just slightly better than yesterday. No significant improvement yet. In between iv’s, chest therapies, and eating I’ve managed to sleep most of the day away. Guess my body is working overtime to keep up, and to breathe. As far as how long I will be “locked up” it’s still unsure at this point. My docs are saying at least a week, but I wouldn’t be surprised if it’s another full 14 day stay. I’ll buckle down and do it, as long as I’m home to enjoy the holidays with my family!

At times like these, it’s hard to play the “why me” card, while trying to stay positive. I was just here, two weeks ago, why do I have to come back? What am I doing wrong? I do everything, I’m told to do and then some. But then I stop and say “Jennifer this is the hand you’ve been dealt. You are a fighter, this is just another bump in the road and we WILL get through this.” I also keep reminding myself that one day this will change, I WILL get a call for a new set of lungs, and life will be so different. A second chance at life, how amazing would that be!! 🙂

Well my respiratory therapist is getting ready to come in. Shake rattle and cough time! Until next time…

~Jen~