Tonight

So tonight was nothing earth shattering. My wife came up to spend some time with me. I have done nothing but eat and sleep. I feel like a blimp. Like the food isn't being digested. I hope that tomorrow I will feel better about that.

LONG LONG TIME

I started this blog(like many other things)gung ho about doing it daily or weekly and it has almost turned into monthly. My attention span when it comes to stuff like this is very short. I have made a promise to myself to write on here everyday, even if I have nothing to say about CF or transplant.

Today is my 5Th day in the hospital for this crazy lung pain I was having. I though my lung was collapsed as has happened before. Turns out it wasn't collapsed but infected. So after managing my pain(Morphine) the infection is now under attack with several IV meds. So things are going smooth as of now. I hope to go home on IVs on Monday. That would be great because for some reason I really feel angry to be here right now. I think it was because it wasn't really a "planned" trip to the hospital. Planned meaning I wasn't really feeling sick. So this pain really came out of nowhere and kicked my ass a little. I will do what I need to do as usual but I am not happy about it.

It also happens to be my nefew's first birthday party today. Happy birthday Tucker! I hope to be able to travel to MI next weekend for Easter and see him along with the rest of the family. It has been more than a year since I have been up there so it would be nice.

Realization

On February 9Th my wife Stephanie and went to Loyola to meet with Dr.Love, who is the transplant surgeon. While sitting in the room we both came to a great realization, it is very possible that I may not live long enough to get my transplant. We remain positive and I will keep taking care of myself as good as I can.

The reason for this realization is that when you are waiting for a lung transplant you are given a score from 1 to 100. This score is call LAS(lung allocation score). The higher your number is the higher your priority for transplant is. My current score is 35. While 35 may seem high to most people waiting for transplant the reality is that with CF patients transplants are done when LAS hits to 45 to 50 range. Unfortunately for a CF patient to increase the LAS they most keep getting sick but not sick enough where they are to weak for a transplant. There is a fine line here because when a CF patient is at the point that they are listed for transplant they are SICK. By "sick" I mean that they can die at any given infection they get. A routine hospitalization could be the last. CF kills slowly. It does not matter how good of shape you are in or how long its been since the hospitalization.

It is hard to come to grips with this. While there are a lot of CF patients that live long and healthy lives, there are also CF patients that struggle with health their whole lives. Either way the end is clear, this disease will kill you. I have never said this out loud or written it but how does not scare the crap out of you? The answer is as complex as the way CF affects all of us. In every case of CF the outcomes are very different.

I just want to live happy and free as long as possible. I get scared now every time I get sick and go into the hospital I am afraid it will be my last. I know that this affects my everyday life in a way people cannot comprehend. I don't stress out about bills or whats for dinner. I never worry about dirty dishes or laundry. What I worry about is making everyday easier. Whether it's shoveling the driveway so my wife doesn't slip or sweeping the floor cause I know that it bothers my wife when there is dog hair on the floor. I hate it when people complain about having to do chores or complain about work. I stress out when people bitch about walking the dog or having to go work out. I stress out and get mad cause I would love to be able to do all of those things.

I do as much as I can with my health the way it is. I have been so caught up in waiting for my transplant I am forgetting to live my life. That changes today. I am going to live once again. I just want my life back.

Home

I spent only 10 days in the hospital this time. I feel the best I have felt in a long time. I did a PFT and my FEV1 was 24%. I also had 2 CT scans one of my brain and the other my lungs. Good news, my brain is there and normal, bad news, my sinuses are full and infected. No surgery though cause my lungs are not strong enough for general anesthetic. The CT of my lungs, good news they are still there with no deep pockets of fluid or caverns of any kind, bad news, bronchiectisis(?) inflamed and enlarged bronchi which are painful at times. My nurses were awesome though and my Dr is top notch as usual.

Now I am fighting with Osco pharmacy and express scripts to get my TOBI and Pulmozyme covered and either picked up today or sent to me by Wednesday. I spend a hour and a half to get things kind of sorted them out. I am waiting for Osco to call back and let me know we are good to go. This all makes me wonder how hard they are going to be when I get my transplant. I'm already sweating about it.

Always, Ken

It's 2010

Wow it's the first blog of 2010 for me. So much has happened since my last blog post. Christmas, my birthday, and the new year. I was in the hospital for all but Christmas. I was feeling a little sick but more so I was tired and not really feeling like me. We call this feeling "baseline". I was afraid if I waited any longer I would be sick and really really feeling bad. Once you start feeling too bad when your lungs only work at 28% it is really hard to "turn the corner"(which means to start feeling better). So I thought that I would avoid a deadly situation and come into the hospital. The good news is that I am feeling better,but not back to my baseline.

I also have had this feeling of being light headed and dizzy. I was sure it was related to my increasing CO2 level in my blood but the doctor isn't 100% sure so we did a CT scan of my brain. I am sure it is going to turn out to be nothing but I can't help but to wonder.

To add to all of the health business my wife and I are constantly trying to save money and pay bills. We can never seem to get on the positive side of the deal. I am very patient when it comes to our financial situation. My wife deserves so much better. We have made some very poor choices financially when I was able to work, and never planned for the day when I couldn't work any more. Now she pays the price by having to work harder and for less money to make sure we can pay our bills. Simple things like buying groceries and even just going to the movies to get away from life for a few hours.

I love my wife with all my heart and she has done so much to support me in the 8 years we have been together. She really is the center of my world. I will pay her back some day for all she has done.