As you read on about my life and times, you will realize just how true those words are! I have been asked to update my story and rather than go in to detail about what negative or difficult things that have happened to me, I would much rather talk about what I have done to overcome it all. Let me begin by telling you a bit about how I became sick and what followed.

I have always been very healthy and an athlete so when I was 29 years old, I started feeling short of breath, and having a lot of colds, I was very concerned. Then, New Years Eve in 1987, I was taken to emergency by my husband (boy friend at the time) with severe shortness of breath. I was given a breathing treatment (first of many to come) and chest x-ray. I was then put in the hallway (sound familiar?). Then they sent me home and said I had asthma!

I continued to have breathing problems but I used inhalers like they were going out of style. I had yet to know what my disease was and how to care for myself. It took six years before I'd find that out.

On December 5, 1992, I told my husband to call an ambulance. He said he would take me to the hospital since it was only about two minutes away. However, I told Danny no - call an ambulance. They arrived quite quickly and at the time we lived in an upper apartment with many narrow stairs. They attached Oxygen to my face and had me walk those stairs! Three of them were around me. They had pulled the ambulance up onto the lawn so once I got to the bottom, I could lay right down onto the gurney and off we went. Once I lay down, I don't remember anything except that I did throw up so they removed the Oxygen.

To make a long story short, I woke up attached to a vent, four days later it was removed and I began having severe pain in my stomach. They kept doing tests and finally they were gonna go in and take out my appendix. I just wanted them to do something because the pain was terrible! I have yet to have pain like that and I have been through a lot.

I could not be put under because of the lungs so I was given a spinal tap. The surgery lasted a lot longer than expected because it was not my appendix at all! My colon had ruptured and had been like that for a while. I was septic shock and the doc still doesn't know how I made it.

Many things incurred but after three weeks I went home with a colostomy and a rare lung disease called Alpha 1 Antitrypsin Deficiency! HUH what is that? The only thing I knew was that it was a genetic and that my Mom was tested and she also was an Alpha. I saw the doc just about every month after that and I kept getting sicker and sicker. By this time, I had the colostomy reversed (another spinal tap) and I was becoming very depressed and had given up. I was to the point where I could not do anything for myself and had to use a wheel chair.

One day I woke up!!! I realized this is not the kind of person that I am and that I was not leaving this world without one hell of a fight. So fight is what I did. I was also listed on December 21 for a double lung transplant and I was so ready that I told the doc. After he said I was a a candidate, LET's DO IT. He must have thought that I was crazy. Well, I guess in some ways I am. :-)

So I began the wait and at first sort of did, just wait. Then I realized you can't do that -- you have to be productive -- you have to take back the control. The only control I knew that I could not have was the fact that I was on a list and other people had their say as to when I would be transplanted. I also had a little war going on with my transplant center. You see they wanted to do a single so that they could do more patients. I understand that, I really do, but I was 36 years old and I had a disease that I would always have. Transplant would not cure me. How did I know this? Because once I decided that I was going to be the one in control, I read everything I could get my hands on, I exercised every day, I learned about supplements and nutrition and I became involved with two support groups. One that dealt with Alpha and the other dealt with transplants. I did not have a computer until after my transplant well after it.

I was always worried that they were not going to give me a double as I was listed for and it was 31 months before the transplant came. This was the first of many lessons. When I was listed, they told me 9 months to a year. HA! As time went on and I became more and more convinced that they were passing me up to do more patients, I worried so much, that what I worried about came true.

After two false calls I was finally called on July 1, 1996. I was ready and not scared at all. I am a very positive person and was not afraid of anything that would save my life. I always thought positively (that is after the initial feeling sorry for myself stage that I spoke of). I remember taking off my clothes and that was it! Some very complicated things happened to me and I would not know of them for three weeks. The surgeon began the surgery and had removed my right lung, but as he picked up the donor lung, he knew something was not right. It was very heavy and the doc knew I was in very big trouble because these lungs were very edemas and should not be used. What were they to do? My lung was out! No one checked the donor lungs when they arrived at the hospital. I paid a high price for that little oversight. The doctor thought of putting my lung back in but it was worse than the bad donor lung. So he implanted the donor lung and did a lung reduction on my left lung. Remember the fear of not receiving a double lung transplant? It was coming true and not only that, I was given a death sentence that day!

They decided to try one more thing and that was place me on ECMO, a special life support that acted like an artificial lung, until hopefully this one would work. I was hanging on, besides the ECMO which had garden hose size tubes going into my neck through the lung and out through my groin. I was on three poles full of drugs. They kept me out of it. That is why it took three weeks before I had any clue. This was the second time that I awoke to my family saying it will be all right or it's only temporary! Here is where my attitude, my exercise, and my all around, "I am gonna beat this and be back to my physically active self" comes in. The doctor said if I had not done all that I could before the surgery to stay healthy that I would not have made it. This is where NEVER GIVE UP comes from and little did I know that I would use those words not only to help myself but to help others as well.

I did survive but I was not doing very well and I finally asked the doc what happened to me. By the way, the word asked is an understatement. We had a long talk and decided that I would be placed back on the transplant list. Which is what we did on January 14, 1997. I continued to work out slowly and keep myself busy with positive things. I had joined a health club about a year before my transplant (yep O2 and all went three times a week) and I also got my first computer and joined to on line support list of which I have been a member ever since. The people have been there for me many times and I like to think that I have helped a lot of people myself. At least, that is what I have been told. I look at a problem or situation from all angles and find the good in everything. I have developed quite a talent for that. I believe that it is God using me to help those who have trouble seeing their possibilities !! The amount of close calls I have been through and the strange medical problems I have had make me more and more sure that I am here for a reason and that everything I have gone through is for a reason.

So for years now I have been diligent with exercise. This is most important and most people can exercise, they just don't know it! Some are not to exercise, but their docs will tell them. I spend three days a week in the club. I do 20 or 30 minutes on the bike or treadmill and two hours of weight training. I first began with only using the nautilus machines and once I knew how and what I was doing, I moved on to the free weights. My brother helped me along. I would put me and my O2 in the car and meet him there. You see you can do a lot - you just have to condition yourself because you can get very un-conditioned very quickly if you do nothing.

Moving an arm or leg takes oxygen and if you are efficient with that motion then you need less to do it. If I listed my whole workout here you would think I was one of those body builders. Well, I am building my body to withstand a transplant and the medications afterwards. Let me tell you this is the smartest thing I could ever of done. Yes, it was HARD very HARD but I NEVER GIVE UP!!

I went from two minutes on a treadmill and curling two to five pounds to doing 30 minutes easily and curling 15 to 20 pounds. I do a number of exercises usually at least four different types for each area of my body. My most difficult is putting 50 pounds on my shoulders and doing squats. You see I have the strength in my muscles and bones but I don't in my lungs, or I could do more. Listen to me :-)) I push the envelope now and I want to do more!

I cannot stress how important all the things I did for myself are and it's not just one thing, it is a combination of many, many things. Most importantly is the attitude (mine) and the support I get from others. I am not afraid to ask for help if I need it. No one should be! Whatever you gotta do to survive short of harming others you gotta do, because no one is going to do it for you.

I love my online support from Second Wind and the Alphas. I have found that helping others helps me a lot more than you could ever know. I don't see myself as a Miss Know It All, I see myself as someone who has experienced a great deal, learned from it and went on to learn more so that I could be there for others to help them to not have to deal with as much as I have had to do!! I think I have accomplished that in being a positive force for all those scared people when they first learn that they are sick. God is using me and I have to take advantage of that and do what I can.

After a while they found that I had a collapsing airway which also contributed to my Shortness of Breath (SOB) after further testing they found that I needed a double stent installed and that it was deep into the airway. They didn't even know if they could do it. After careful thought and talking to my doc's (and through my own research) I told the docs, no. I knew that this could give me a little more airway but also that it could lead itself to possible infections. The surgeon was not happy I don't think. They have used me as a guinea pig once too often. Which I don't mind really as long as my best interest is at heart. In this situation I did not think that it was and my pulmonary doc agreed.

So I am rolling along doing all I can to stay healthy, help others, be involved, do things for awareness for both my disease and organ donation. When I am to be tested again.

The issue with the original surgery was something I was angry with at first. How could they do this to me? I soon realized that I had to forgive before I could move on. It took a lot of soul searching and talking it out. Many of my friends on the Second Wind Support Mailing List helped me but that was after the fact since I wasn't on line until eight months later.

In October 1998, I called to give my new cell phone number only to find out that I had been on hold since March and no one told me!! This upset me very much after all I had been through and I was counting on this transplant to help me achieve other goals that I have set. Of course it was a Friday and I could not talk to anyone about this. It was a good thing it allowed me to do a lot of thinking and get a lot of advice from my online friends.

After hanging up the phone with the person who told me, I came directly here to tell everyone what had happened. The support was nothing more than a gift from God. This could be a good thing that I had to wait some more. For what, I don't know, but I have made it through so much and I was not going to give it up now.

After a weekend of strong support from my online friends and a lot of thinking. I came to the decision that waiting was a good thing. It also made me face my own advice that I give to everyone, that I can make it throughout anything and that whatever happens is for a reason. Something better was waiting for me down the road and I would wait again for it to show itself and when it did, I would know what to do.

I have always believed in God but I was never really spiritual. I mean, being spiritual can mean different things but what it really is, is not so much all about God, but about you and God. You know little voices you get or little things that happen that you just ignore. Well, that is God communicating with you. I listen to those voices and I pay attention to everything that happens. I am very in tune to everything around me even to people who are not anywhere near me.

I always thought that my life's mission was to grow very old and be an athlete and have a nice house and go places and do things. Have monetary things. Well, I was so wrong!! I am very pleased that I know that and have taken steps to change that feeling. "You have to be willing to give up the life that you planned in order to live the life that waits." Truer words have never been spoken. I still plan on living a long time but I do not have a plan for my life because it has already been planned for me. I just have to pay attention and act on what I am supposed to do. As it turns out, I can't be the athlete I always was but I am very active in staying physically in shape. My years of being a tomboy were for a reason -- they helped me to be able to make my body strong. My years of having no Father and a Mother who worked all the time, made me strong in that I am not afraid to do things alone. Everything that has happened in my life was to prepare me for a very big challenge I would someday have. Boy, I have had some dooseys. Most of all I see the funny side of everything and I use laughing and positive thoughts to work through everything.

My life now is still a waiting game for a second transplant but that is not all that it is. I have a very full life with my online support list friends and last year we found the perfect house (with leadership from a guardian angel). It is very secluded on a one and a half acre wooded lot. It's not the house so much but the location. I can get in touch with myself and nature, and it makes me very happy. I find myself looking out one of the doorwalls and smiling all the time.

So, yes, I have been through hell and so have others. I choose to be happy and to do that you can NEVER GIVE UP!!! My five cats take very good care of me. I recently did a lot of decorating (If I spend a lot of time here I want it to be beautiful it also costs money). That is another thing you have to try and find the place to put the issue of bills and medical expenses. I have em and somehow they will get paid. If they don't, they don't!! I look at life like this, either you will survive or you won't so that makes it two ways to go. So why worry? That analogy works for everything. But you have to take it upon yourself to do all you can to make the things you want HAPPEN.

My next project is well taking good care of myself but I am moving on with life and my husband and I are in the process of getting ready to accept a new shelty puppy in a few months. Boy will that keep me busy :-))

Good life to all, your health may not be great but you can make the best of it. Just ask me and remember:

Karen Fitchett
February 1999