Friday, August 28, 2009


All I can say is I hate bactrim. It makes me feel like crap the entire time I am on it. First it starts with the itching. That last like 2-3 days. Then I get very fatigued. Next hot flashes and headaches. I am blessed with 2 weeks of this. One week down, one to go. It is going to get the best of me. I am very irritable right now so don't mess with me.

I have been watching my nieces this week and they probably think I am such a bitch. I have not let them get away with anything. On top of all the side effects from the Bactrim, I am also not sleeping well. I need 8-10 hours of sleep or I am a bear.

This weekend will be a weekend of rest. Brian is going to camp to do some cement work. Hopefully, it won't pour like they are saying it is going to.

Not too much going on here. I am still waiting for new lungs and trying to stay healthy. The air is much better then it has been. I can actually breathe and not need to run my A/C. I love fall weather in Maine.

Friday, August 21, 2009

What the???

Well, I went to my CF appointment. Shouldn't I be getting sicker if I need a transplant? My lung functions were good for me. Normally as I do PFTs they get worse. Not today. The more I did the better they got. My FVC =62% and FEV1=42%. I continue to boggle my CF docs mind.

So of course I asked, "Should I still be active on the transplant list." His reply "Yes." So then I asked "What if i got my FEV1s into the high 40s?" He said "At that point I might be comfortable letting you go inactive."

Dr. Z made a good comment to me. He said that he has a lot of patients that have worse lung functions then me (that he hasn't even considered for a transplant) but I have scarring in a unique area which worries him. He does not want me to get pneumonia in my lower left lobe because it could be very bad. Plus, I need oxygen with exertion which plays a role of keeping me active on the transplant list.

So where do I go from here? I guess I can work my butt of trying to raise my numbers more or I can do what I have been doing and just wait around for a call for lungs. Oh yeah, he also made another interesting comment. He said "I doubt the call will come anytime soon." I am so confused.

Anyone that knows me knows that I am not a quitter and will work my butt off to see if I can put off the transplant. I also have to put a lot of faith in God that the call for lungs will come when it is meant to be.

I better get back to work.

Thursday, August 20, 2009

Weekly update

Not much to update on. I had a great weekend with my family. Friday, I went to Funtown/Splashtown with my mom, my sister and her 2 girls. We had a blast. I went on all the rides. I didn't even need my oxygen until we were walking back to the car. It was 9pm and the humidity was increasing. All the walking and rides, really shook crap up in my lungs. I have been coughing so much I have laryngitis.

Saturday was the perfect beach day so I went to Old Orchard Beach with the same crew. I wish I could spend every day at the beach. It was another awesome day. In the afternoon, we took the girls school shopping. The stores all had A/C and there were no crowds.

Sunday another great day. Everyone but Brian went to my other sister's house. Tonya has a beautiful pool. So we all hung out by the poolside for the day. Brian was up at camp doing some more renovations. I think he plans on going up this weekend as well.

I spent most of this week resting and working. I started my 2 week course of Bactrum. I am on it for 2 weeks and then off it for 2 weeks. I hate it. It makes me itch for the first few days and I can't go in the sun. I don't get a rash or hives but some places itch so bad it burns.

I have a doctor's appointment tomorrow. I know I am at my baseline. I don't expect to learn anything I don't already know. I am going to see if Dr Z can think of anything new we can try to mix up my treatments. I need change. He might say what we are doing is working so let's keep it that way. I still think we are missing something big.

Well, that is it for now. I'll let you know if anything exciting happens at my doctor's appointment.

Wednesday, August 12, 2009

That time again

It is time to blog again. I am inspired by Ronnie at He does such a great job blogging everyday. My life just is not that exciting to blog every day.

I had a great day on Saturday. I went to a family reunion and saw a lot of family I haven't seen in a while. After that I went to my niece's, Kassie's, softball family get together. She tried to kill me. She asked me ever so nicely to play in the softball game. At first, I said no way but they needed another player so I went for it. Keep in mind I have never played softball in my life and I can run without my oxygen. First time up, I hit the ball and ran to 1st base. Next batter hit the ball, I ran to 2nd. Next batter hit the ball, I ran to 3rd. Next batter hit, I ran home. Huffing and puffing, I has my sister go get my oxygen. Where have my lungs gone?

I had a long post and it got deleted before I could post it. Thing like that really tick me off.

The week I am watching my nieces and working. Last night my niece, Rheana spent the night. We had a her favorite pasta salad for dinner. Then I let her have an ice cream sundae and a s'more. I love spoiling my nieces and nephews. We also had a fire in the chimenea. It was a nice evening.

Tomorrow, I am hoping to see my oldest friend, Andrea. We have been friends since we were 3 1/2. I haven't seen her in a while and miss her.

Friday it is Funtown with my nieces. Funtown is an amusement park that I try to bring my nieces to every year. Soon I'll be able to bring my nephews. Does any one have any experience with amusement parks and riding on the rides with oxygen? I need the oxygen to keep up with the kiddos but I still want to go on he rides. Advice please!!!!

Health wise, I am feeling pretty good. One week off IVs and no major fevers. Fingers crossed I can last the summer without needing IVs again.

Gotta go!

Thursday, August 6, 2009

My Evil Head

Here is a picture of my port not accessed. It is still bruised from being placed. You can also see the 2 incisions that were made when they put it in place. You can also see where the needle was inserted. And stop laughing at my tan line!

I promise that will be the last picture of my bare chest that I will post. The good news is you cannot see the port when I wearing clothing and some of my bathing suites even cover it.

Oh and one correction, the evil head is for Mike's Hard Ice Tea not Lemon Aid.

I hope you all had a good laugh today. Keep smiling.

Puppy Pictures

I was just looking at some old pictures and found these of Tucker when he was just a puppy. I think he was the cutest puppy ever. Of course, I am a little bias.
Now don't you think he was adorable?
I had planned on posting some pictures of my port when it is not accessed but my the memory on my camera phone is full and I can't find my digital camera any where. Once I find it then i will post some. Brian and I call it my "Mike's Hard Lemon aid evil second head". Does anyone remember that commercial? Here is the link to it: Hey if you can't laugh at yourself...who can you laugh at. I'll post some pictures later.

Wednesday, August 5, 2009

Time to blog again

I haven't had that much to write about so I haven't been very good about posting. Today was the last day of my IVs. I get my needle pulled when my nurse get here. Yeah.

It is very humid in Maine today. I went outside for about an hour but just sat at my patio set on my deck.

This past weekend I went to my sister's and floated around her pool. Since my port is accessed, I can't actually go swimming. Hopefully once the needle is pulled my fevers will stay a way for a while so I can actually get some summer time activities in.

I am hoping that we will have a few nice days next week. I would like to get to Old Orchard Beach and take my nieces to Funtown with my sister. I have my nieces next week from 7am to 1pm while my sister works. I normally watch them during the summer but my sister was out of work all summer because she broke her ankle and shredded ligaments. Next week is her first week back to work.

I think I am going to go inactive on the transplant list during Labor Day weekend so I can go to camp with Brian. I took Thursday through Friday off from work.

I am starting to get the feeling I wil be on the list for a while. It is just a hunch.

I need to get my ass back on the treadmill. First I need my husband to move stuff in the basement so I can get to it. I need to move stuff around in my lungs.

Well, my nurse just pulled in. Time for Chest PT and have my needle pulled. YEAH!