My port

I know a lot of people are unfamiliar with ports so I will share what I know. Here is a great link showing a picture of a port and placement: http://www.diamondblackfananemia.com/links/mediportinfo2.pdf.

My port was placed on my left chest a few inches below my collar bone. This is a picture with the port accessed.

I don't know what it will look like when it is not accessed. The port will stay accessed the entire time I am on IVs. The needle gets changed every 7 days. I will have my home health nurse do that because I don't think I can pick myself with a needle. The reason this is better than a PICC is I can have my home health nurse access it when I need it and I don't need to go in the hospital just to start IVs.

So far I have done everything that I normally do. I even did my vest and had no problems with it.

In other news, I am going home today. I have a IV due at 2pm and I am going to get chest PT. After that, I can spring this joint. I will be on home IVs for another week and a half.

I cannot wait to be at home with my puppies and sleep in my own bed.

Another day

Well, for those who don't know I am in the hospital. I was running pretty high fevers for a few days and figured it was time for another PICC and IV antibiotics.

After on failed bedside PICC failure and a trying IR PICC placement I decided it was time for a port. So today I went to the OR and got a port. The surgery was pretty minor. This afternon, the PICC I had placed yesterday came out. I hope I will love this port.

I am not sure when I will be out. I hate to pester the doctor though know I can do everything I am doing in here at home. I can't wait to sleep in my own bed.

My CF doctor came in today and showed me my last 3 x-rays and explained what we were looking at. Wow, my left lung is crap! He is going to give me a cd of the x-rays. Once I get it I will try to post the pitures and explain what is going on.

Well, I am going to go relax. I hope you all have a great night.

Normal...

Well not really. I tried to have a normally date with my husband last night. We went out for dinner and then stayed and listened to the band for a couple of hours. Sounds like a normal date night right?

Well, first he had to drop me off at the door because I didn't want to lug my oxygen around and I would get short of breath walking from the car to the restaurant. In the past going out to a band would lead to letting loose and dancing. Not last night. I did enjoy 2 woodchuck ciders. Woo who call me a lush. The band was so much fun and they played a ton of danceable music. Of course, I got to be a "wall dancer". You know those girls that don't dare to get up on the dance floor so they stay against the wall moving their heads and feet. To end the night I had to keep looking at the clock and do the math of how long it will take to get home, do my meds, my vest and get to bed. We decided to leave around 11:15pm...yeah I know night owls, not. That got us home about midnight and I was in bed about 1am. Of course, Brian had to go get the car and pick me up at the door of the bar. Lots of fun.

I am still blessed that I was able to get out of the house for a few hours and hangout with my husband and my friend. I am blessed that I had the choice to wear my oxygen and it wasn't a necessity. I am blessed to have a great husband that will drop me off and pick me up at the door. Though I don't get it why he just wouldn't part in the handicap spot next to the door that was empty. I have a handicap plate. He kept saying what is someone else needs it more than us. I can just drop you off and go park the car. What ever, I didn't need to walk so why do I really care.

Today, I am waiting to hear from my nurse so I can figure out if we might venture to the beach for a few hours. Of course that is pending that my husband is willing to go with me.

Well, that is my thoughts for the day.

One more thing!

I think everyone needs something that will make them smile at least once during the day.


So here is a picture of my dog, Tucker in one of our many boats.



Don't tell me that didn't make you smile.

One of those days

I hope the day gets better. I got up at 5am to bring Brian to catch a ride to work because his jeep has been in the shop all week. He was pissy from the minute I rolled out of bed. I could say anything without him taking it the wrong way. I think he needed to got back to bed.

He is going up to camp to work on it this weekend. He will leave right after work. Of course, he needs to pick up his jeep first so I hope it is ready. I can just imagine what this bill is going to be. So as he was getting in to his ride's car, I asked him do you have your cell phone. Nope! Luckily, I had mine in my purse. So I gave him my phone and sent him on his way. I need to make sure the Brigham & Women's know to call his cell phone to reach me this weekend. What a mess.

I came home and did some house cleaning which takes me three times longer than it use to because I have to stop every few minutes to cough and catch my breath. Who would of ever thought that I would need to take a break after sweeping the floor. Good news, I didn't need my oxygen.

It is suppose to be a beautiful day in Maine today so I figured I would take out the riding lawn mower so I can mower the lawn later. I moved everything out of the way. Got the mower out of the garage. Got of it to put gas in it. I went to restart it and nothing. What the ?!@$@! I was just running. I gave it a few more minutes and tried it again nothing. Can I get a break. Brian will get all ticked off because it will be in the middle of the driveway when he come home on Sunday because I can't start it to put it away and there is not way I can push it back into the garage. What ever!

My mom is going to come down and spend the night tonight. Tomorrow, she needs to watch my nephews so I am going to go with her and hand out by my sister's pool. Hopefully it will be nice and sunny and the rain will hold off until late evening. I am in desperate need of some vitamin D.

Health wise I am feeling pretty good. Only one day of fevers this week. I'll take that every week. I have been sleeping really good. I have a CF appointment at the end of this month. I would like to try to gain 2 or 3 pounds by then. I am at 109 which is where I have been since my last flare up and IVs. Good news, I am not loosing. I need to get my butt back on the treadmill or at least start walking outside. Maybe I'll go for a few walks with my mom this weekend.

Here is to a nice sunny weekend!

Today is the day

Yes, you read it right. Today is the day I am going to go active on the lung transplant list. That means the call can come anytime. Of course, today I feel pretty good but I know that this is not the norm these days.

I had a nice but rainy vacation. I felt pretty good most of the time except for some GI issues. I think I had caught a bug because Brian has it now. My lungs were pretty good most of the vacation.

I need ideas on how to live a normal live while waiting for that call for lungs. My center wants me no further than 4 hours away from the hospital. I currently live 2 1/2 hours from the there.

I guess that is all I have to say today. I think I am still in vacation mode.