Still feeling better each day, and my lungs are very happy. Today's FEV1 meter reading....2.02! NEW RECORD on the meter!!!!
Friday, October 30, 2009
Still feeling better each day, and my lungs are very happy. Today's FEV1 meter reading....2.02! NEW RECORD on the meter!!!!
Thursday, October 29, 2009
Well today I decided to give it a whirl and go back to work. Exactly one week ago today is when I was at work, and knew I had pnuemonia and was admitted. It was great to stay home and rest, especially loved being home with the dogs. However, I was beginning to go a little crazy and was happy to get back to work today.
Things went really well overall. The staff, doctors, etc. were all so awesome and happy to see me. I definitely am lucky to say that I truly love my job. I only had a handful of patients to take care of today, so it was a nice way to gently get back into my groove. I was able to all the IV's at work with no problems, ahh what a nice day.
So tonight my Mom offered to come over after work and make me dinner. Woo Hoo! Nothing like mom's cooking. However my Dad called and said he got some fresh Maryland Crabs Steamed! So now they are bringing over steamed crabs for dinner instead. Totally made my day!! :)
Well overall I'd say it feels great to be almost back to my normal. Tomorrow is Halloween at work, including dressing up and making food. Yay!
Did I mention that I blew out on my PFT monitor today and got a 1.99!!!??? That's right!! Couldn't be happier :D
Wednesday, October 28, 2009
So I'm on these IV's 4 times a day and they are working wonderfully. However... My dogs clearly look at me as If I've turned into an Alien when I hook them up. It cracks me up every time! So here's my new picture of what I think I must look like to them, roughly 4 hours a day ;)
Tuesday, October 27, 2009
Well I got home on Saturday night from Hopkins and have been feeling better everyday. It's so nice to be able to treat this bugger at home. Nothing too exciting going on here since I've been doing a whole lot of nothing, but thoroughly enjoying it ;) So the plan is to have the PICC in until roughly November 5th (2 weeks). I'm going back to Hopkins for re-evaluation then, so we'll go from there. I've been doing my FEV1 meter at home just to see how things are improving. I have to say that little meter was right on the money on Thursday when I felt so poorly. Talk about consistency. Each day my numbers are improving dramatically. YAY!!!! :)
Sunday, October 25, 2009
Check out my friend Ronnie's awesome blog providing CF awareness and so much more. I was asked to do a guest post about how exercise has increased my lung function. Thank you Ronnie for such a great opportunity to share my story with others! :)
Take a Look!
Friday, October 23, 2009
Well the Asthma exacerbation has turned into a little bit more. I went running on Wednesday evening and when I was done the 2 miles I thought I was going to be kissing the pavement. Whoa I could barely move air at all. So I decided to give it over night to see how I did. Thursday morning I called Hopkins first thing and give them a heads up. Immediately they wanted me to be seen. I left right from work and when I got there I knew that something was going on for sure. It felt just like when I had pneumonia in 1998. What a drag.
I did the PFT's and they listened to my lungs, lots of junk and rales in the bases, which landed me an admission. My FIRST adult admission ever I must say :( I know it's the best thing, but it's been tough to be here I must admit. Especially not being used to this at all is so weird. Each new nurse that I meet is puzzled that they don't know me. I guess that should make me feel good.
So I got the PICC put in this afternoon. I'm having TOBI and Cefipime infusing on me, as well as oral Bactrim. The PICC is apparently too far in my heart (In the Right Atrium) and it needs to be in the Superior Vena Cava. Now I'm just waiting for the IV team to come in and readjust me as needed so I can get my meds again.
I miss home, I miss the dogs, and just hope I can go home soon. We're waiting for Home IV care to be set up. However it being Friday, and everyone has left for the day I might have to stay over the weekend :( Fingers crossed that's not the case. Everyone has been great, and the well wishes I've received on Facebook, and texts mean the world to me.
Wednesday, October 21, 2009
So Monday started another lovely exacerbation of Asthma. I called up to Hopkins to talk to my nurse. I have 2 different nurses, one I love and one, not so much. The not some great one talks to you like your stupid and don't take care of yourself. Hence, I'm not a big fan of her at all unfortunately. So she called me back and I told her what was going on. At first she just kind of blew off what I was saying and started to quiz me on how to prevent the flu. The voice in my head was screaming "Are you kidding me lady!" I think she forgets I've had CF for 29 years, and am also a RN. Grrrr. However I politely answered her degrading questions so I could get off the phone with her ASAP.
She wanted to do nothing for my exacerbation to be honest. Just "keep doing what I'm doing." I then reminded her that I am only on Advair for inflammation. I asked her for a course of Prednisone, and Albuterol Nebs. She did agree to both after I had to remind her that I have Asthma also. I don't mean to sound negative, It's not me. However I just have a hard time when I'm trying to be proactive and take care of my myself and she is just blowing me off. Sometimes I truly wonder if she should be practicing as a nurse anymore. She's told me on different occasions that Sudafed is not a decongestant!? Hmm yeah I wonder about her. If you have patients who are 100% + compliant, she really needs to not be a road block.
So I'm on my course of Prednisone for 10 days weaning down to 10 mg. So far the Albuterol nebs are opening up the airways nicely and It feels great. I've also kept on running and pushing it. I figure I can't let this get in my way. So I've pushed hard and have ran some really tough workouts the last few days. It sure is good at getting stuff out though, woo.
Hoping for total relief here soon. At least I can do some nebs while I'm at work, that's cool ;)
Monday, October 19, 2009
Today would have been your 76th birthday. You popped into my head first thing this morning, much as you do every single day. To say I miss you is an understatement. I don't even think it's possible to put into words how much of a hole there is in my heart now that you aren't here. You were by far the best Grandfather on this earth to me, and for that I'll always be grateful. I wish so badly that you were here today for me to call you and wish you a happy birthday. I'd sing to you on the phone (even though it sounds awful) you'd laugh, and we both know you'd sing to me on my birthday. I know that you are here with me, I don't even need to explain it, I just know it. I pray to you every night that you watch over all of us in the family and keep us safe and healthy. You do that for us and again, I thank you for that. Every time I cracked open a yummy Maryland crab this summer guess who I thought of? :) My Pop, since crabs were/are our favorite!!!! Every time I hear the song "Bad Bad Leroy Brown" your favorite song ever I laugh and cry at the same time. Pop, I hope you had a nice birthday today. I'm sad that Pancreatic Cancer took you away from us so soon, you mean the world to me. XO
Sunday, October 18, 2009
I'm wondering if anyone has tried any Herbals, and if they worked? I've had my second sinus infection in 2 months and that motivated me to do some research. Granted as a nurse, I'm around tons of people all day long so colds are inevitable. My coworkers have been very sick lately and I really really don't want to get what they have. So along with the immune system herbals I found others that I thought may be helpful, even CF wise? We'll see.
St. John's Wort
I'm interested to see if I see/feel any differences. I'm just trying to be pro-active, especially in this awful flu season thus far.
Friday, October 16, 2009
I have a few things I'd like to tell you. You're getting a list, since I don't think you deserve a formal, nice letter. This is probably because I don't like you.
1. You are making me a very "unhappy camper" which is not my style at all.
2. I wish you would play nice and cooperate given that the many other areas/systems of my body are affected by your ignorance.
3. Didn't you just visit me labor day weekend Mr. Sinus infection? Did you miss me? Back so soon?
4. You'd better stay out my chest or else, buddy!
5. I want to thank you for making me do more of my favorite (insert sarcasm here) sinus rinses, yummy. ;)
6. Your sincere evilness has made me not be able to taste foods adequately. Don't you know I love to eat!?
7. Your constant drainage (which I will admit has not been as bad this time, thanks) makes me feel like a piece of sandpaper is in my throat. Oh and the hoarseness.....well that's just awesome, I love sounding like a dude when I talk.
8. Your making me stay in this weekend, however I'm glad you've decided to visit on such a rainy weekend.
9. If I didn't have a mirror, I'd swear Mr. Sinuses that my head is the size of a fat watermelon, weighing about 87 pounds.
10. Your drainage has made me feel so nauseated today that I thought I was going to barf on one of my patients. That wouldn't have been very nice of me!
Thanks for listening, and please go away soon.
Wednesday, October 14, 2009
When you break the chair, from all the crazy Vest shaking! ;)
This is what has happened to my poor chair. I have to laugh about it though because after doing my vest in this old chair for so long it finally snapped...literally, in 2 places. Thought those of you who "Vest" would truly appreciate this ;)
Monday, October 12, 2009
I bought a home FEV1 monitor several months ago. I try not to obsess over the numbers, but sometimes I do just that. So over the course of the year I've seen a huge improvement! That along with my continuous efforts to run several times a week. So after work today I blew into the monitor and got the HIGHEST number I've EVER gotten!!!! I thought I was going to burst I was so excited!!!
When I got home I did my Monday run, and felt great! I was able to do 2 miles in 24:03. The coworkers said they wanted to start back running today with me after work. Did it happen? Unfortunately not, but that's ok, I couldn't be happier for my own progress and FEV1 today!! :) And I need to somehow make sure I save this, so I can show Hopkins at my next clinic visit! Woo!
Saturday, October 10, 2009
We had a great day today, and HOORAY for FALL being here!!! We got up early this morning and went out to western Maryland for our favorite Fall Festival. It was a wonderful day, and I just loved every single minute of it. It was Scott, my best friend Beth, and myself. Beth actually spent the night last night, so I had grade school sleepover flashbacks. Ha ha, except this time we were on my back deck enjoying Pinot Grigio, not kool-aid (which I still LOVE) by the way :)
This morning we started off at Starbucks for our favorite Pumpkin Spice Lattes. Then we headed out for about an 1.5 hour drive. It was just beautiful too. The leaves changing colors, the crisp air, the overcast sky, the smell of fall in the air....ahh it was awesome!!!
We walked several miles all around town, and got a great workout since we were in the mountains, hence these legs are super tired. We went to tons of yardsales, and ate amazing food!!! I think by 10 AM I'd already eaten 2 pieces of pizza, and Italian sausage sandwich, and had a Coke. The we walked by a stand that sold "butterfly fries" and Oh my GOODNESS! Let's just say I had enough salt and calories to feed an army today. We got some great deals today, and I can't wait to go back next year.
On the way home we decided to stop at a local Orchard and Pumpkin Patch. We got apple cider, ghords, large and small pumpkins, apple bread, and some fresh veggies. What a great day!!!
Friday, October 9, 2009
And...here we go!
1. Sweet dreams is what I was wishing for instead of hearing my alarm clock this morning :)
2. Running the 5K was a huge accomplishment, especially for me.
3. Silliness is the epitome of me :)
4. Setting up our projector and showing Halloween movies in our driveway Halloween night, Cute trick or treaters, and having our annual Halloween campfire is what I'm looking forward to this Halloween.
5. Outstanding or not I am doing my best at Running 4-5 days a week.
6. To be pregnant and a mommy is what I want right now!
7. And as for the weekend, tonight I'm looking forward to perhaps enjoying a glass of wine, tomorrow my plans include going to Western Maryland for a huge Fall Festival and Sunday, I want to Go to our Renaissance Festival!
Wednesday, October 7, 2009
Today at work I had a patient that broke my heart. That's part of the job I know and I've dealt with the good and the bad as a Nurse for 7 years now. However I never want to be one of those nurses that becomes cold or immune to feelings. So today I had a 40 year old gentleman that came in with classic "red flag" symptoms. He had 16 pound weight loss, blood in stools, abdominal pains, night sweats, however only for the past 2 weeks.
Immediately upon discovering his symptoms he went to the Emergency Room and was evaluated. They did an abdominal CT scan and saw a suspicious area of the liver. Upon having a liver biopsy it was discovered that he had cancer of the liver :( So he came in today for his colonoscopy to discover or rule out the primary cancerous site. Normally Colon Cancer will spread to the Liver first. He was expecting cancer, and I think we all were, but it's never easy to officially hear it.
While he was my patient I was doing his primary assessment and prepping him for surgery. You could just see the fear in his eyes and the look on his face. Yet the entire time he was nothing short of polite and kind. It ripped my heart out. He had no prior medical history, just this new onset unfortunately.
Us Nurses were deep in coversation and the tech came out of the procedure room and we just knew and all went silent :( It was confirmed that he "was really bad." The rest of the day the moral was just awful at work, and you could just feel it in the air. His prognosis isn't good at all and he needs aggressive treatment immediately.
I'm way too deep of a thinker at times and I know it. However today I couldn't help but just watch him and his wife in the surgical discharge area just sitting there together awaiting their fate. It was awful. Can you imagine what that must be like to prepare yourself to be told you probably only have a few months to live? It upset us and I haven't been able to get him off of my mind all night long. As his nurse even, and I know that was a small part today, but I feel like I was kicked in the gut with him. Sadly, I deeply hurt for him and his family. He's just 40 years old :(
Things like this run in waves at work too. We'll go months without a serious problem, or prognosis. And wouldn't you know it that as soon as we said that it was going to start.....the very next patient that came out of surgery had colon cancer too!! :(
It was that kind of day at work where your heart really hurts when you leave for the day. I just think to myself what are my poor patients doing tonight while we go on with our "normal" lives?
I know everyone has their daily tackles of life, and we have many many with CF. However tonight I have a heavy heart. I called Scott earlier just to vent and get it out. He gave me some of my own advice. Know that I did my best and was the best nurse to him which I was. Also he said to let this continue to drive me to fight and work hard at my own health everyday....
It's true no matter how cliche' it is....you just never know! Appreciate each day, because tomorrow could be a different story. This Nurse definitely had the heart strings pulled very hard today....
Tuesday, October 6, 2009
So after work today, I made a quick stop at Target. I was doing my thing and knocking out my list pretty quickly. Then this adorable elderly woman comes up to me and puts her hand on my arm and asks me if I know where the coffee pots were. Without hesitation I left the nail polish area (yes I'm obsessed) and helped her out. We got the coffee pot squared away and she was all set.
Before I left to continue my shopping she again gently touched my arm when she realized that I didn't work there. No red Target T-shirt, I was wearing my navy blue scrubs. She started to cry when she realized that I didn't work there and helped her. It was the sweetest thing ever. I was so happy to have helped her out, and never expected that kind of reaction. She said she was just so happy that I was so willing to help her. Once she realized I had scrubs on she asked me what I did. I told her I was a RN and she put her hands up gently around her face and said "Oh my goodness, you're so sweet, what a kind and gentle person." Wow I thought she was then going to make ME cry.
I have to say it's definitely the little things in life like this, that just make your day. It just feels good to help others....
Sunday, October 4, 2009
Woo Hoo!!! This is a huge accomplishment for me and something I can check off of my "Life List." Words can't describe how great I feel right now. At home I've been running several times a week. My neighborhood is relatively hill free, which was a big shocker for today. The run was awesome, but extremely hilly beyond belief. I was a little surprised by the steep steep hills. Whoa mama. I ran the first mile smoothly, then the gigantic hills came, and came, and came some more ;) My little legs were burning like crazy. Even having to slow it down to almost a walk or power walk, I kept going and running. When I saw the finish line I had a huge rush of adrenaline. Wow! So I kicked it into high gear. Par for the course was that the finish line was at the top of a big hill (go figure ;) I finished at 39:03 and I couldn't be happier with myself. On top of that I won a door prize of a $25 gift card! I can check this goal off the list. It doesn't stop here though! The running continues and I hope this feeling of accomplishment, and happy lungs and body continues too!!!
Saturday, October 3, 2009
Yeah I'm a little nervous about the big 5K tomorrow. I think it just boils down to this is something huge that I want to prove to myself. I know I can do it, and have been working hard on running several times a week. My co-workers have already said they're not even attempting to run, but are going to walk it. At least it will be good having them there, but I'm essentially doing this alone. I shouldn't be worried, or nervous, since this is a voluntary effort with no pressure. Thing is, I'm putting the pressure on me, to prove that CF won't get in my way and I want to kick this 5K's butt!!!! Wish me Luck! :)
Friday, October 2, 2009
And...here we go!
1. I have a history of Cystic Fibrosis.
2. Fluent Medical Spanish and Sign Language is something I wish I knew.
3. I'm eating (or recently ate) dinner at Ruth's Chris steakhouse for a work event/lecture.
4. Up for work at 0440, get myself together, take care of the dogs, then off to work, and on the road.
5. So that's it, October is here!! Time for all the wonderful things of Fall at it's finest!
6. Even a small victory is still better than nothing!
7. And as for the weekend, tonight I'm looking forward to going to Nacho Mama's with the work crew, tomorrow my plans include decorating the house for fall, putting together our adirondack chairs for the deck, and running, and Sunday, I'm running a 5K!!!