Friday, June 26, 2009


I think I tried to kill what I have left of my lungs. Yesterday, I wanted to get rid of some mildew that was on my bathroom blind. I have this stuff that works awesome. It is called mold away by mold armor. It just melts way mold and mildew.

Well, I went and sprayed the blind down around 10:30 am. I shut the door and kept the vent on. Around 4:00pm, I figured I better shower before Brian got home. When I went in the fumes were still lingering so I opened the bathroom window and got in to the shower. I wasn't in the shower more than a minute when my lungs started closing up on me. I quickly washed my hair, wrapped myself in a towel and headed to my bedroom. By this time I was really struggling and started coughing and then throwing up and then the headache came. Finally, I stopped coughing and throwing up. Of course not until after I lost everything I ate for lunch. I made my way to the couch, where I laid until 7:30pm until I felt i could move without throwing up or my head exploding.

This morning my lungs are tight and I coughed up some streaks of blood. I am sure this is because of yesterday. I guess I'll never do that again.

On another note, we are off to camp this weekend. We have no big construction plans for this weekend. We need to do some serious cleaning. Yeah, you guessed it, I won't be using any mold away. The weather looks crappy again. Yuck! Where is our nice sunny weather?

Update on transplant: I go for my blood gas on Monday because I was sick with 102.4 fever on Wednesday and had to cancel my appointment. This is the last test I need before I can become active. Once I get this done, I will not need any other test for the next 6 months. Every six months, they check my blood gas, 6 minute walk, kidney functions and PFTs so they can update my score with UNOS. I am still taking it day by day on the activation but I can tell you I will be activated sooner rather than later.

Well, that's it for this Friday.

Monday, June 22, 2009

My weekend

As of Friday, I planned to be activated on the transplant list ASAP but as the weekend went on my activities where less affected by my health. The air in Maine has been very damp and heavy. This makes it hard for me to breath. I do okay resting but once I get up and start doing stuff I start coughing and my lungs tighten up. I was able to go for a short walk on Sunday morning without my oxygen. I was trying to catch some one's loose dog so it wasn't a planned walk without oxygen. I coughed up a ton but rebounded pretty quick. The good news is Brian and I got the dog and was able to return it to it's owners.

I know deep down I need to be activated. My plan is to take things day by day. I really want to get through this summer. This may sound selfish but once I am activated, I cannot be more than a 4 hour drive to Boston. This means no camp. I want to try to go up as much as possible this summer. Not only because I enjoy it up there but the more we go to camp the more that gets done there. I want the majority of the work that needs to be done be done so when I get my transplant we can just enjoy the camp by hiking, fishing, canoeing, boating, swimming, snow mobiling, etc. These are things that I just don't have the energy to do on most days but have always enjoyed.

My husband and I had a nice time at camp. If you don't already know ,we are remodeling the entire camp. We basically ripped everything out and now we are putting it back together. We are also going to be adding 2 bedrooms and a porch onto it. This weekend we framed up a wall and laid the bathroom floor. Saturday, my husband took me for a ride in the woods. He loves to ride around on old logging roads and find ponds that he can fish. While doing this, he finds some nice scenic views. We tried to get to one of the views but the road was washed out. So he took me in to one of the ponds that he likes to fish. The weather wasn't the best so we didn't get to go out in the boat.

For Fathers day, we stopped at Brian's parents and had a nice dinner with his mom and dad. It had been months since we had been to his parents so we were due. My dad had to work so I didn't get to see him on Father's day. I made sure to call him and will see him next weekend. We see my parents a lot more than than Brian's parents.

Well that is about all that is going on in my life. I will write more sometime this week.

Friday, June 19, 2009

Welcome and Nice talk

First I want to welcome any new readers that have found me through Ronnie's blog. Thank you Ronnie for our nice exchange of words yesterday.

As many know, I am struggling with the idea of becoming activated on the transplant list. I have already been evaluated and accepted at Brigham and Women's Hospital in Boston. At my last appointment they really expressed that I should be activated. They stated my CF doctor is really concerned about me and has called several times.

Yesterday, my phone rang. It was my CF Doctor, Dr. Z. He had heard that I having a tough time making the decision to become active. I told him I needed more information. Here is a list of why he would like to see me listed:
1.I have a lot of scarring. In layman terms, there is no way to improve your numbers.
2. There are not treatments to add except IVs when I get sick. I already do what they would do for me in the hospital.
3. It takes me a long time to recover from a flare up. This past time I was on IVs for 5 weeks. Which has been the norm lately.
4. My weight. I loose it so easy and have a hard time gaining it back.
5. He thinks I spend too much time on my CF. This one I just don't understand because I always have. The only thing I have added is daily Chest PT from a home health nurse.
6. I am physically healthy now to handle a transplant and he doesn't want me to loose that window.

I am very glad Dr. Z called. We talked for a good 45 minutes. He really gave me some things to go on.

I don't have the traditional case where I need Oxygen 24/7, I only need it with exercise or exertion. I don't think my body is retaining CO2 but i may be wrong...none has discussed this with me. My FEV1 is higher then a lot of people that have a transplant. My biggest issue is when I get sick, I get really sick and this scares everyone except me. I have always kept a positive attitude and that I will fight until the end. I just look at an infection as a bump in the road. I guess that is where my attitude needs to change. I guess I need to think about that one bad infection and be scared of it. I just never have lived like that.

I have made a promise to myself that I will not allow myself to waste away. I watch my weight and calorie intake. I have also been very committed to exercising. I need to keep my muscle ton up so I have every chance for a great recovery from the transplant.

So where am I in this decision? I am giving one last effort to see if I can keep any infections away by being very active on the treadmill. I am going to make a daily diary of how I feel/how my current condition is hindering my quality of life. For example, yesterday the treadmill was hard. After a minute, I felt I was huffing and puffing. I only did the treadmill for 20 minutes. So this tells me, I have a low tolerance to damp heavy air which is what the air quality was yesterday. That kind of sucks since I live in Maine and it is very humid during the summer months.

Another example, if I wake up in the middle of the night to go pee and I lay in bed contemplating getting up to go. Why you ask? Because as soon as I get up, I cough and cough and cough. Sometimes this lasts for 10 minutes other times an hour. It is very hard to go back to sleep after a coughing fit.

Wow, this is a long post. I have so much more on my mind. My next post will be shorter I promise. I hope you all have a great day.

Tuesday, June 16, 2009


Sorry, I haven't blogged since my transplant appointment. I am still trying to gather my thoughts and make a decision on what I want to do.

Everyone seems to be pushing for me to be activated. I just don't know if I am 100% mentally ready. Next week I go see my CF doctor and I will have a long conversation with him on why I should be activated. If he sells me on it, I will go active. Either way I am going to get a blood gas done so that way Brigham and Women's have everything they need to make me active when I am ready. I have decided no one but me is going to make this decision. I am listening to every one's input but it is still my decision.

Mean while, I still want to prove everyone wrong. I have been pretty dedicated to the treadmill. Everyday it get easier and easier. My goal is to get on it 5 out of 7 days a week. My speed is getting to the point that I could be jogging. Maybe in a few weeks I will attempt to jog. I have been adding incline to get my leg in shape. My heart rate has been great. My oxygen is good as long as I remember to breath through my nose. I get singing to the Ipod and realize my oxygen is dipping. Ooppps.

The past 2 years, I have spent way too much time at home. I need to stop doing this. So yesterday, I created a list of everything I want to do this summer. This will get me out of the house more.

I also created a list of goals for my health. If I can meet these goals, I should be able to hold off on the transplant. I am also going to have my CF doctor help me create a list of things to watch for so I know when I need to be active on the transplant list.

I had my PICC pulled yesterday. Freedom at last. I had it in for almost 8 weeks. I used it for 5 of those weeks. My goal is to go the entire summer with out needing IV antibiotics again. They only way I have a chance of doing this is to stay active and keep on the treadmill. I can't give the mucus a chance to settle.

I better get back to work.

Wednesday, June 10, 2009

Treadmill and other stuff

I have been pretty consistent with the treadmill. Out of 15 days, I have only missed 2 days. Starting yesterday, I am doing the treadmill twice a day. In the morning for 10-15 minutes and in the evening for 20-30 minutes. I figured this gives me two different times of the day to cough up some junk. I do around 1.5 miles a day sometime more but never less. It is almost time for my second walk on the treadmill today.

Tomorrow,I go to Boston to be re-evaluated to see if I should be activated on the transplant list. I think they will make the decision based on my PFT but who knows this is all new to me.

Today was a good day because the Redsox beat the Yankees last night. They are 6-0 against the Yankees this year. Yeah!!!

I have a busy weekend ahead of me. I hope I don't wear myself out.

Well, that is about it. I'll write more after my appointment tomorrow.

Tuesday, June 2, 2009

Beautiful day

It is a perfect spring day in Maine. The weather is partly cloudy with temps in the 70s. Can't complain about that.

I am home waiting for my nurse for my chest PT.

This afternoon, I will get on the treadmill for 20-30 minutes. I would walk outside but the mosquitoes would carry me away.

I am pretty bored because I am not working. It is hard not to log on and do work. I thought the break would be good for my health. My IVs should be done on Thursday or Friday so I plan on going back to work on Monday.

My nurse is taking some blood today to see if my inflammation levels are any lower. If they are, I can have my PICC pulled and be done with IVs. I should know tomorrow.

I can still feel spots in my lungs that have junk attached but at this point Chest PT and the treadmill is the only thing that will work to get the junk out.

Well, that is it for today. I hope everyone has a beautiful day.