5)Attitude and Activity! I try to have a positive, healthy attitude about life and about my illness. Ok, I admit, sometimes it doesn't work and I have a "pity party" about this or that, or feel like throwing a tantrum, BUT I don't and won't let myself stay in that "place" or that state of mind for too long. I say, "OK, that's it, enough of this, pull yourself out of this and put yourself back in a "good place", a better state of mind." Staying positive is not always easy, but I have found that being happy is a lot better than being miserable. I have a whole new attitude about what bothers me..... as they say, again, I "don't sweat the small stuff" so much anymore. So much of what we worry about is just not worth the worry. It helps me to read positive, inspirational stories, poems, etc. and to be around "upbeat' positive people. I love all kinds of music, and especially songs that speak to me and I can relate to. About a year or so after my transplant a country song came out by Jo Dee Messina called "Bring on the Rain". This song really spoke to me and still does. I get inspired every time I hear it, so I play it often! It says, "can't imagine what else could go wrong", and wanting to "hide away somewhere and lock the door" but eventually the song leads to this may be "a single battle lost but not the war", "tomorrow's another day......I might feel defeated, and I might hang my head, I might be barely breathing, BUT I'm not dead!". This song reminded me so much of myself. At times when things were going wrong, I felt defeated, but it didn't mean I was giving up. I may have lost a battle, but I was still fighting the war! I also recently bought a little book that was very inspiring to me called, "My Beautiful Broken Shell", by Carol Adams. Staying active keeps me positive, and being positive keeps me feeling like being active. They work hand in hand. I take a whole day now and then, to do nothing except be a couch potato but these days are few and usually just when my body tells me to take a break and do nothing. I do take an afternoon nap most days, but that is after a busy morning or day of exercise, errands, appointments or working around the house and being generally busy. I have found that my body, my mind and my attitude function best if I get a nap on busy days (not to say that I always get one though). Many people wonder what I do to stay so busy since I am not working. Staying healthy and well IS almost a full time job in itself when you think about it. All the appointments, pharmacy trips, phone calls to my tx coordinator, doctor offices and insurance companies (these calls are never simple, I could write a book on experiences with insurance companies), exercise classes, walking or bike riding, checking my blood sugar, and remembering when to take meds several times a day and insulin, etc. are all very time consuming. I have taken a few computer classes at the library and plan on signing up for some online classes, with my local community college. I spend a lot of time on the computer, especially on my Transplant Support groups, e-mailing, chatting, learning and also hoping in some ways I am helping others, especially those who are having a hard time with "the wait" or those who are going through rough times post-tx. Another thing I do to stay busy and it also gives me a sense of "helping" others is, doing errands for family or friends when I am out daily, or taking people to appointments, who can't drive to them or need assistance. My husband and I enjoy fishing, going to concerts, amusement parks, going out with friends, bowling league, etc. I definitely still have to pace myself everyday and manage my time so as not to overdo it. It sometimes takes me longer to do things because I take a lot of breaks. My body is not its "old self", and a really busy day today usually results in "paying for it" or needing to rest more tomorrow. I have to admit I do tire easily and I am not sure if that is "lung" related, medication related or just related to the trauma my body has been through (of course it is not age related!).With so many meds, so many of them have side effects that sometimes catch up with me. If I am on my feet too much it results in really swollen and hurting feet and ankles, and a really achy back. My doctors tell me to pace myself and LISTEN TO YOUR BODY! And I do, I know my limitations. I may have to slow down a day or two sometimes but that doesn't hold me down for long! And last but not least,

6) Pray and keep the faith! God is on this journey with me, always right by my side!

*When I got out of the hospital I weighed a little less than 100 (was at 89 at one point when I was in the hospital). Not too long ago I was at about 163 which is the highest I have ever been. I felt that was a little too much, (even though I am pretty tall, at almost 5'9") plus they had just increased my Prednisone back up to 10 mg daily, which meant more hunger, more weigh gain. I decided right then I was not gaining more and I wanted to lose a few pounds. By increasing my exercise a little and watching my diet closer, I am now about 153. *I am taking about 42 pills a day, which sounds like a lot, but I know some transplant patients that take many more, while others take many less. I do get headaches, leg and joint aches, and bad stomach upsets/aches at times, some of which may be side effects of the medications. *I take blood pressure medication because some of my anti-rejection meds cause me to have high blood pressure. * I have acid reflux and take medication for this, as most transplant patients do. Reflux can be very dangerous for lung tx patients. I sleep with my head elevated because of the reflux. * I have medication-induced diabetes, for which I take pills and insulin. Whenever my prednisone dose changes, so does my blood sugar range and amount of insulin I take. My blood sugar is always highest in late afternoon when the Prednisone is at its highest level in my system and then will drop to normal often late at night. I can see a big difference in my blood sugar on days I do no or little exercise. Differences in my routine and activity lead to lower or higher blood sugar, sometimes making it difficult to predict. I do have instances where my blood sugar falls to unsafe levels, and I get clamy, shaky, hot, so I take my blood sugar at the first hint of this. It is not that unusual for it to fall to 45, in which case I have to get some sugar in me quickly. (Hey, I never complain about having to eat a candy bar!) *My last spirometry tests (which is an indication of how well your lungs are working) showed I had a FEV1 of 86% (of normal), my FEV25-75 was at 110% and FVC was 76%. The FEV1 and FVC are stable, however the FEV25-75% has been falling for the last several months, which causes my doctors a little concern. *Most of the problems that come up with me at present are more related to side effects of medications or conditions I have acquired due to medications. *My swelling, aching feet and ankles and sore lower back are the main thing that effect me on a daily basis and sometimes keep me from doing things. Some of this is from medications and some from the chronic blood clot in my left leg that has never gone away. I really have to watch sodium intake also, as it increases the swelling. Sometimes the backaches limit me from the amount and type of exercise I can and want to do. Staying active, but not overdoing it is sometimes a thin line. *Although my lungs are doing well, as I mentioned before, some of my spirometry numbers have fallen some recently. My doctors feel that most likely "whatever" got to my lungs originally may still me active in my body and responds to the steroids (Prednisone). They recently did a bronchoscopy to try to determine or rule out chronic rejection, which is sometimes the cause of falling numbers. My numbers are really to high to be having rejection but they are trying to determine the reason for the decrease. The bronchoscopy came back as "inconclusive". At the present, they are just monitoring my numbers very closely, and they seen to be staying stable again the last couple of months. Therefore they are not presently trying to get me to any lower dose of Prednisone, and just recently raised my dose to see if it would keep my spirometry more stable. So far so good! I was taking 7.5mg of Prednisone daily and they have put me back up to 10mg daily. Prednisone is the culprit in causing my diabetes, my cataracts, and my lowered bone density, Osteopenia (just to name a few). *Cognition - Sometimes I notice that I have very poor memory, especially short-term memory and ability to concentrate. Sometimes my thought process just doesn't seem to work right! This may be medication related or possibly due to my blood sugar levels being unstable (highs and lows). I have noticed that many transplant patients I have contact with notice this same type of problem and there are many different theories as to the reason for this among us and among doctors. * I keep good records and a daily journal of doctors appointments, medical related phone calls, what I did for the day, and how I have felt that day. This comes in handy if you have something come up and the doctor says, how long have you had this headache, or when did you notice your leg was swelling more, etc. Sometimes when you read back it helps you to realize why something may be happening, such as you started a new medication and three days later you notice you are not feeling up to par. There is so much to remember, it always helps me to write things down.

I am always trying to challenge myself, and set new goals and find new adventures. A while back some of my friends in various support groups (both internet support and at my hospital) started talking about the U.S. Transplant Games. This is an event held in the US every two years to celebrate organ donation and organ transplantation. Transplant recipients participate in Olympic style games through friendly competition. It is a BIG event in the "transplant world". I have known others who have participated and told me how exciting it is to be a part of "the games". Not just transplant recipients attend, but also many donor families, some attending with the transplantee that received their loved ones gift of life. So this event is not just physical, but very, very emotional! I had thought about attending but never really seriously. Then Dr. Garnett said to me, while talking about some of my activities, " You should go to the games!". I tossed it around, and mulled over it and talked to my husband and my family and many others and as it looks now..... I AM GOING! I am pre-registered and I am signed up for individual bowling and team bowling. I am very excited about going! I have never traveled much, never flown in a commercial airline ( just a little two seater, open cockpit, stunt plane that did dips, and twists, and barrel rolls, but that's a whole other story!) The games this year are in Minneapolis , Minnesota , July 27-August 1st. I am on Team Virginia (each state has a team). Besides participating, I will also be able to meet many of the people I talk to and have met online, who are also attending! It should be very exciting!

If you have made it this far, I commend you for sticking with me, as my story has turned out MUCH longer than I intended! If you are reading this, you may be waiting for a transplant or you have had one or you may be reading this for some other reason. Whatever the reason you read my story I just want you to know that I wrote it not to discourage anyone with all the things that can go wrong with transplants or chronic illnesses, but on the contrary, to encourage you, by seeing what we all can over come! Having this transplant is so worth it, I would do it again despite the hard times. If you are going through some tough times, struggles, things you hadn't anticipated, or feel like it would be easier to just give up, please....... DON'T GIVE UP! You may be going through the "bumps" in the road or maybe they are "boulders", as I often thought. You may feel like one step forward results in 3 or 4 backwards and this is very disheartening to say the least. It is easy to fall into depression, which can lead to inactivity, more sickness, and not following your doctors orders or medications, which can be your demise. ~ Hang in there. ~ Keep pushing yourself. ~ Set goals. ~ Don't just settle for where ever you are now no matter what level of health you have. ~ Discipline yourself. ~ Make yourself, FORCE yourself to have a positive attitude. ~ When you feel overwhelmed just put one foot in front of the other and one day at a time and don't give up! As in my case, a bad start and difficulties after transplant does not necessarily mean bad outcomes down the road! It may be weeks, months or more, but things can turn around. In my case, my first year was medically awful (my viewpoint), the next year was a lot better (but still not great). Now over three and a half years post transplant my life is so much better than I had ever anticipated it could be! (Ok, knock on wood!) It took me a while to realize, "Hey, you are not so sick anymore, get up off your butt and see what you are capable of doing!" I want to reap the rewards of these great new lungs! Who knows what awaits me in the future. I know God has something He wants me to do and I hope I can accomplish it. I am realistic and know that things could change tomorrow, BUT I am living for today!----Irene Bailey Overton

"Life may not be the party we had hoped for, but while we are here, we might as well dance!

If you have any questions or comments please feel free to contact me at iboverton@simflex.com. I would love to hear from you!