Friday, January 22, 2010

Are you serious?

So the past few days I have felt crappy. Not like needing IV crappy but just blah! Today, I woke up feeling worse. I am very wheezy, tired, my sinuses hurt, headache, very little voice and I am coughing up a little more junk. I am really hoping this is just a cold and that it will pass soon. The good news...I have no fevers. I just took some cold medicine which I never do but I want to see if I can shake some of these symptoms.

I really want to leave the house this weekend and this will put a damper on my plan to do so.

The tiredness may be from waking up too early again. This week I have been up before 6am every day. I need my sleep!

I really want this pot needle out of my chest so I can take a nice long bath and relax. Oh course my nurse is working evenings so it won't be until much later today. I could of had it removed yesterday but my home health agency sent out a LPN so she could not remove it. That is my luck.

I am in a cranky mood and should just go back to bed but I have too much to do for work. Unfortunately that requires a voice which mine is very limited today. Some days, I cannot win!

Thursday, January 21, 2010


Since being told that I was in need of a double lung transplant, I feel like I just stalled my life. I need to keep living life while I wait for the call. How do you continue to live life when everything is so hard?

My life consists of eating, sleeping, watching TV, taking medications, chest PT and exercising. I hardly ever leave my house and when I do it is to get more food or medication or go to a doctors appointment.

Before I heard that I needed a lung transplant I did things. It has been so long ago, I don't even know what I did. I know I love to travel, attended sporting events, eat out, visit friends, spend time outside, and spend time with my family.

Today, I am going to put on my big girl panties and start enjoying the things I use to. I know it will be hard but just sitting in my house is hard. I doubt that I will be jumping on a plane to travel to some warm destination but I am going to plan a little get away for Brian and I.

I am going to go to an ice fishing derby with my husband on Saturday. The fresh air and exercise will do me good. Yes, the cold air will sting my lungs but I need to get out of my house. I will just put my oxygen on my face, which I hate to do, and then wrap up in a nice homemade scarf.

I have lost who I am. I need to fight this battle not only physically but mentally, which I think is 100 times harder. So from this day on, I am going to plan one or two activities a week that will help me be me and not someone just waiting for a lung transplant.

Tuesday, January 19, 2010


Well, I have have 2 more days of IVs left. My fevers are gone which was the reason I was started on the IVs in the first place. My lungs still feel very junky. Maybe today will be the day I get back on the treadmill. My energy level has been down since starting IVs so hopefully today I will see it increase.

Last week, I went to transplant clinic. Things are stable. I got to have an arterial blood test done. It wasn't as bad as all the other ones that I have had. The RT got it first try. I did PFTs and my 6 minute walk test. The day was pretty uneventful. The highlight of the day was being able to spend it with my dad.

I think my word that best describes the past year of my life is "uneventful." Though I try to live my life the best I can at this phase in my life, it is by far eventful. I cannot wait until I can "live" life the way I am use to living it. I need to decide where my first vacation is going to be after I get my new lungs. My husband and I love to travel and have been unable to for the past three years because of my health. So I pose this question to all my blog readers: Where would you go and why?

Thursday, January 7, 2010

IV time

That's right, time for the lovely IV antibiotics. I have to say how much I love my port. The decision was made this morning to start IVs and I just finished my first dose. I should know by now I can't get much past 8 weeks before needing IVs.

At least I don't feel horrible. I just have my stupid fevers,I am a little more short of breath when moving around and I am starting to cough more junk up. Hopefully, this will be quick and painless. The IVs are scheduled for 14 days, every 8 hours.

I guess I get to drink lots of fluids and sleep a lot. The bright side is, I am not stuck in plastic hospital bed for 1-2 weeks.

Tuesday, January 5, 2010

Control Freak

Over the past few years, I have become aware that I am a control freak. When you are facing a double lung transplant, you have to learn to let that go. I am trying but not doing the best job at it.

Since my dry run on my birthday, I have realized there is so much to do before I get my call. These are not things that you would think of doing like packing a bag. These things are asking for help during and after the surgery. I have been told that having a strong social network will help in my recovery. Yesterday, I realized that I have not asked for support from my friends or family. So I wrote an email asking for help. Asking for help is something that does not come natural to me, that is part of being a control freak.

Last night, I was trying to talk to Brian about what he was going to do about work while I was in the hospital and when I came home since I am going to need care 24/7. He replied "Whatever I want to do." His employer is very understanding and will let him change his schedule or take time of without pay. Oh course I replied "What will that be? I need to know so I can make sure I can work out people to be here with me if you go to work" In a very Brian like way he said "Don't worry about it. I will make sure you have someone here to take care of you at all times."

Don't worry about it? Hello, you are talking to a control freak. Do you think I can just let go of this? I need to know. Did I tell you that I am a control freak?

I am trying to let go of this situation and tell myself Brian will take care of all this. This is very hard for me, probably harder than knowing that I am going to be getting a double lung transplant.

I am a planner. I always have all my ducks in a row. I do my finances every day. I know where every penny goes which drives Brian nuts. Knowing this, he wants me to not worry about my care after my transplant. If I had it my way, I would have a sign up sheet with dates and times when people would be here. It would be framed and hanging on the fridge.

Brian is a different breed then me. He goes with the flow. I don't know how to do that. I guess I just need to trust him and realize that is capable of taking care of this for me.