On July 4th, I was paroled from my ICU room for a little while. This was the first time, other than for a few tests that they had to take me out of the room for. From some areas of the hospital you are able to see the river where they do annual July 4th Fireworks. I was having such a hard time emotionally that some of the nurses along with my family asked the docs if they could take me out to areas of the hospital so they could let me watch some of the fireworks through the windows. I would be on my machines and in a special cardio-chair that you are kind of sitting up in, but not a wheelchair. They felt I needed the change of scenery if only for 30 minutes. To do it some of the nurses had to come back that night on their time off because it involved too much for the regular staff to do to get me up and out and not neglect the other patients. That staff was so wonderful... 3 or 4 nurses and a Respiratory Therapist all came in on their off time to make sure I got to do this. It was wonderful to get out of my room on a "pleasure trip"!!

I was difficult to get off the vent, because I was so weak, had infections, etc. When they tried to wean it off I struggled to breathe. The docs told me "we will take this slow because we know how weak you are" and it took a few weeks to wean me off of the vent and build up my lungs. They would cut it off for an hour one day, then 2-3hours, then 4-5 hours, etc. until I was off for most of the day. As I was being weaned, I would become so tired and worn out after a few hours off of it, however it was the only way to wean me off and get my lungs stronger. I also had the trach so there was a lot of sign language and charades going on in my communication. I was trying to write and my hands were way so shaky from medications and weakness. My family and I found that a sense of humor is good to have in times like this. Sometimes when I was trying to make them understand me I was laughing and crying at the same time! They eventually were able to start using a "pasa muir" valve with my trach, which the nurses would put in when I had company or docs were in so I could ask questions. It was much easier to talk with this in but I could only keep it in for short periods. I also gradually started eating some foods, even though I still had tube feedings. My nutrition was so poor. I am told I was at 89 pounds at one point (and I am almost 5'9" tall). I was also having stomach problems. I had trouble keeping foods down for a while and also had diarrhea. Physical therapy was progressing slowly but surely. I really believed at first that I would never walk again. I was finally able to take 2 or 3 steps to a chair, with lots of assistance. Each day was a struggle and a victory at the same time! For a while, I cried every time the therapists would come in, but I new it was necessary. It was such an ordeal, and they were so persistent!

Around mid July, they finally had me off the vent and some of my other problems were stabilizing, I was able to move back to the step down unit. Moving out of ICU made me very anxious again after realizing what happened the previous time I moved out. One of my best friends, Kelly, was with me for the move for support and to help relax me. I had gotten so comfortable with the nurses and routine of ICU, it was really scary, however once there I seemed to progress much better. I still was using a little O2 but finally they made me give it up even though I thought I needed it... I didn't! They even had been turning it off at times I thought it was on. I remember so well Dr. Quaranta telling me they were going to stop the O2 and my little protest with him about that! I started walking with assistance and a walker to a chair or to the bathroom.... Oh it was soooo hard and each step was like a victory. I was trying (sometimes unsuccessfully) to be "upbeat and positive". I wanted my family, hubby and or friends with me all the time. I was still being a baby!

Some of this period is still vague to me, but things were starting to come together and looking brighter. I was able to eat a little better and I could see progress in areas like walking, strength, and endurance. They took my trach out near the end of July and worked on getting the opening in my throat closed up. This seemed like a real step to me! My voice was very soft but was improving. They stopped using the feeding tube and I ate regular food but they kept the tube in just in case I needed it. Respiratory Therapy was still doing nebuliziler treatments several times a day to treat the lung infections.

I think it was around the first week of August when the transplant team felt I was stable enough to work more on getting my strength back full time. They moved me upstairs to a total rehab floor. I still had my doctors visiting me often and still had Respiratory Therapy coming and doing treatments daily, etc. I was told they would work me hard... and did they ever! I still weighed less that 100 pounds. I think I was there about 3 weeks, with very intense Physical Therapy and Occupational Therapy and also Recreational Therapy (which is the field I was in before I got sick...I was getting a dose of my own medicine!). I was finally starting to realize my new lungs were really working and it felt good! It was a good, positive experience and I worked hard and I was worn out every night. Reesa, my Physical Therapist was great and was very serious about getting me walking and stronger. The picture on the left is my last rehab session, the day I went home, and the right is my coordinator, giving me last minute instructions. While I was in rehab, one of our concerns was that my insurance was nearing its million dollar cap. A miracle then happened, my insurance company changed companies, and when they did, my new insurance started back at $0 . When I left there on Aug. 23rd for home, I was walking with a walker or cane and had no oxygen. I had been there for right around 100 days. When I left there on Aug. 23rd, it was exactly a year to the day of my first visit with Dr. Burke, when he told me I needed a transplant. What a year! It was so overwhelming and emotional to be headed home. Even though the last 3 months had not been what I had planned, I thought of all the wonderful people I had met, how this had brought me so much closer to my family and how this experience had changed my life in so many ways! I thought,"Ok...now I can get back to living!!

I came HOME! I was very positive that things were going to get better and I was on my way. Well... it wasn't exactly like that, it just wasn't in The Plan. My sister, Nancy, stayed with my husband and I for a few days to help us get things settled and to help me out because Randy was working during the day. I was getting rehab and things were going slow but ok. A couple of weeks after I got home I ended up back in the hospital for a few days. I believe that first time was some problems with medication levels playing havoc with my stomach. I was going to clinic weekly for a good while. Soon it seemed I would go to clinic and every month or so they would put me in the hospital for something. I got a bad blood clot in my left leg (that still has not totally gone away), medication induced-diabetes, medication levels off, shingles, stomach problems, a pseudomonas infection, fungal infections, and I was having brochoscopies done every few weeks (or more at times).

Every time it seemed like, "Ok, I am on the right track now", something else would happen and I was getting very discouraged again. I was going to out patient rehab but all these "things" were coming up, making it hard for me to really get motivated, although I could see I was getting some stronger and I was gaining some weigh back slowly. I was getting around fairly well, but my stamina and endurance were still very poor. I was still very shaky from both weakness and medications. By December, I was on home IV's for a very serious fungal infection, with Home Health nurses here everyday for several hours. I had done some home IV's before and they taught me how to do them myself. They are pretty easy, but for the fungal infection, I was on one really powerful IV that required nurses to observe you and administer it daily. I had a difficult time with it. Everyday while taking it I would get sick in my stomach. They had to come to do one of the IV's and I was able to do the other ones on my own. Next, the IV meds were dehydrating me, so I also had to do fluid IV's at home which they taught me to do with the IV pump all night. Between all the different IV's, I was on IV's more hours than not during the day and night. One of the meds they gave me with the IV's would make me sleep almost as soon as I took it. Also, I doing nebulizers twice a day. Emotionally and physically this was draining me. I had to stop rehab because I was on the IV's so much of the day and had to work around the schedule of the Home Health nurses. Again, I lost a lot of what I had gained. I was not able to get out much at all. The Home Health Nurses were wonderful but it was almost like they lived at our house. Between IV's and dressings on my PICC line, teaching me how to do the procedures, and they were doing some blood draws, besides still getting use to managing taking between 50 and 60 pills a day, once again I was overwhelmed. During this time, I also had to get use to giving myself insulin shots daily and also Heparin shots in my stomach, because of the blood clot in my leg. This was all hard on my husband too. So many new routines, Home Health Nurses in our house at all hours, little privacy, etc. This was a difficult time for us. I kept telling my self, things have got to get better. My family and husband were making so many sacrifices for me, and I did not feel worthy of this. I was really pretty dependent on them still. I was very trembly from some of the meds, and still not strong enough to drive. I was just struggling to keep going from one day to the next, and trying to keep my faith that there was a reason for me to go through all of this. I don't know what it looked like to people on the outside looking in...........maybe they thought that I was giving up and not trying ???But to me, I was struggling to stay upbeat and positive and just get out of bed everyday, but it was not an easy job some days. I really was having trouble staying motivated because it seemed every step forward resulted in two or three backwards but I was not about to give up. My goal for each day was really to make it through another day and some days that was easier said than done! Nevertheless, I still believed that better days were coming. It is so hard to describe how I was feeling at this time.It seems to be one of those situations that you never really know how someone feels unless you have been on a similar situation. You can empathize but you may never fully understand.

This was also the time I finally started to grieve about the loss of my mother, which happened just before my transplant. I was so sick when she died that it seemed I just went through the motions. Now I was feeling just how much I missed her. She was so wise and seemed to always know how to handle things. So many times I just wanted to sit and talk with her and ask her how to better handle what was happening to me. I was having way to many "pity parties". Often I would think,.... I lost my career and job of 17 years that I loved. I lost my health, my independence and my parents.I didn't even look or feel like the person I was, I was swollen and bloated and my hair was falling out and thin from meds, and at this point it was beginning to look like I might lose my marriage also. But then I would try to turn things around and say BUT, I AM ALIVE!

This was very stressful and painful for us all, this type of situation is hard on a marriage and it was showing. Jan, Feb, March of 2001 was difficult because of the IV's and nebulizers and everything else. I was just overwhelmed. Some of the IV's stopped in January (I think) and some lasted longer. Those IV's I was on seemed to wipe me out of any energy and strength that I had started to build the first few months after getting home. I felt like I was spinning my wheels and going no where. I still couldn't drive, I was too weak and shaky, and my eyesight was failing too, so I was still dependent on others to take me to doctor's appointments, or anywhere I needed to go. I was trying to do more for myself and gradually I was starting to cook more and do things around the house but I was still taking baby steps. Everyone was so patient with me, encouraging me to start doing more and pushing myself more. I really felt at the time, I was doing the best I could for myself.

Around April, my husband decided that it would be best for "us" and for me if he left for a while. It was a difficult decision for him. There had been a lot of stress for some time. It was mostly things related in one way or the other to my transplant. He was frustrated with me and felt I was not trying hard enough and pushing myself to get better. It seemed an unconventional way to get me motivated, but he used "tough love" on me, trying to motivate me to try harder and get back to my life. He moved in with his parents but he remained very supportive. He came over everyday when he got off work and checked on me, usually we had supper together and he would stay for a few hours and then leave. I felt I was doing all I could do, all my body would let me do, but at that point I realized I needed to start setting goals, even if they were small ones. I started walking to the mailbox ... then one house down, then two or three houses. I had been trying to exercise for some time but the complications kept hampering me. Just a few days after my one-year transplant anniversary, May 20th, 2001, I was back in the hospital. (During my first year, besides the first 3 month+ stay, I was in the hospital I think about 6 or 8 more times. I knew all the hospital routines, the nurses, x-ray techs and housekeepers by name, and what meal was served on which day.) This time it was a mycobacterial infection, another fungal infection, and problems related to meds. I had been looking so forward to attending my nephews wedding at the end of May. This would have been my first big event since my transplant. I was looking at it like a "coming out" party, but I was in the hospital, again. This again, was very disheartening to me, but my overall out look was getting better. I had set short term goals on exercise and walking and I told one of my doctors, (Dr. Burke, who had diagnosed me and told me I needed the transplant) during that hospital stay that my long term goal was to climb the Cape Hatteras Lighthouse again one day.

I was serious too. A few months earlier, in a talk with Randy, I had wondered if one day I could climb the lighthouse again and now I was determined to do it! The Lighthouse was a symbol to me. It had weathered many storms and people thought it was going to fall but it didn't and hasn't. I felt in some ways like that Lighthouse... I had weathered many storms, and some people thought I would not make it but I was still standing (although wobbly) and planned on remaining standing.

When I finally got home from that hospital stay, I took a huge step and made a big turn around! I realized that everyday is a gift that I wanted to enjoy. I was tired of sitting around and watching the world go by without me. I had not come this far to sit around. I was ready to reclaim my life! My life had been running me, I was going to begin to run my life! My doctors had told me the first year is often difficult, and how right they were. I was just a little over the first year point now. I was on and off of home IV's again, because of the infections. As I gained strength, (and I really was gaining strength and weight) I felt like I wanted to start driving again but by now my eyesight was failing badly. I went to the eye doctor and I had nice big cataracts in both eyes, caused by the prednisone use. My transplant doctors didn't feel I was ready to go through cataract surgery yet. So I was having yet another test of patience. I was living alone still and doing better but anxious to start being more independent. With not driving I still had to depend on others for a lot of things. My family and friends were a Godsend.

I was doing better all summer and progressed to walking a half a mile, a mile, two miles and more!! My husband got me a bike and I started riding everyday. I was getting stronger! Even though I was doing home IV's still, I was feeling more confident and really feeling good physically. Although during all of this I felt I had been fairly positive considering how bad things seemed at times, during this period I really took another big step forward in attitude and motivation and just staying positive. They finally let me have the cataract surgeries, one eye in August and the other in early September. That was another BIG step and I soon began driving again for the first time in about 16 months. I felt like a bird out of a cage...watch out world, here I come!!!!I started bowling again in the league I had bowled in before I got sick! It was a combination of therapy (I was looking for all types of fairly simple exercise, not overtaxing, that I was capable of) and socializing. I finally regained some more of my independence .... yeaaa!! On Sept. 11th, the morning of the 9/11 bombings, I had a permanent Greenfield filter put in my vena cava .I still had blood clots in my left leg and was on Coumadin, a blood thinner. The blood clots were getting smaller but being stubborn about going completely away. With the filter I could come off the Coumadin and not worry about the clots traveling if they broke up, which could be very dangerous and fatal. The filter would catch them. That was a weird feeling being "put under", just after watching on live TV, the towers being hit, while in a waiting area with my brother Marvin, as I was being prepped for the surgery. I made out fine with the surgery.

After that, I began to really feel myself improving more. I was moving around better, and increasing my stamina and endurance, and doing lots of new things! I still had that chubby "Prednisone face", as I call it! That's me and my niece, Jomie, at her wedding shower I was taking one day at a time.I still was doing a home IV in my PICC line (I think 3 times a week?) With the blessings of my doctors, I started an exercise class two days a week at our local Parks and Recreation center, that included low impact aerobics and weigh training (I was very careful with my left arm with the PICC line, but could still exercise). I was still walking and/or bike riding a couple of miles almost daily ... religiously! (I had done rehab on and off but with all the hospital stays and home IV's along with me not driving, it made it hard to keep it up. I had started my own rehab program in a sense, with the walking, riding, etc.) This was another big step. It was actually a Senior Citizen low impact class., but they cheated and let this 42 year old in ! . It was hard but I never missed a class unless I had an appointment... no matter how bad I didn't want to do it... I did it! I treated my walking and riding and exercise classes as if it were not an option. It was just like my medicine, something I had to do to get better and stay better (and I still have that attitude about exercise). I didn't wake up in the morning and think, "Do I feel like it?" I woke up mornings thinking "I don't feel like doing this but I have too do it!" Then and even now, if I don't feel well in the morning, after I go and exercise I usually feel a lot better. I was getting a little more adventurous. My husband and I went to a Redskins football game in Washington (just 4 hours from us) and that was a great weekend. Next my husband and I were going to Busch Gardens and I asked my docs if it would be ok for me to ride the roller coasters that I love so much. They said, " Sure, go for it!" And I did and it was GREAT!! That's me on the back row on the right with Randy, with my hands in the air and with the Don King hair style!!

People were seeing me and surprised at how much better and stronger I looked. Although I had faith that God would bring me through this, I really was surprised and proud of my own progress and just how good God is!!!I also was having some guilt feelings... I had come through all of this, I felt for a reason... and I wanted to know what that reason was, such as, was there a duty I needed to fulfill? But again, I began feeling like if there was something God wanted me to do, he would show me in His own time.

By the beginning of 2002 I was doing very well for the most part. I was still on some home IV's for the mycobacterial infection, but was able to administer them myself. However Home Health nurses still had to come by every few days to change the dressing on my PICC line. My life was pretty busy again for a change. Between all of my doctor appointments, (Lets see - there was the stomach doc, diabetes doc, vascular doc, eye doc, transplant docs, GYN doc, Dermatologist, labwork, etc.) and the normal routines of a transplant patient (home IV's, meds several different times a day, insulin, checking blood sugars, doing daily breathing tests on my home spirometor, I could go on!), and going to exercise classes and errands I was always ready for a nap when I got home every afternoon. My doctors were clearly pleased with me and Dr. Garnett told me, as the saying goes, "You've come a long way baby!"

I came off all IV's in January 2002 I believe. My life seemed back on track in most areas. I was not on any IV's or antibiotics for the first time in a long time. I was down to taking 30some pills a day instead of the 50 or 60 or more I had been on at some points during my recovery. My breathing tests were steadily improving. Life was good and I was really starting to enjoy life to the fullest again! And I was still looking back and thanking God... for sustaining me, and asking Him to help me keep improving and moving forward, because I wasn't done yet! I still had goals to reach! My supportive and loving husband was still not living at home with me, although we had remained very close, seeing each other on a daily basis. In March he decided to move back home and I was thrilled!!

For most of 2002 I had very few extenuating health problems, just a few minor things that are normal for transplant patients. I was still learning to manage my time, my health and regain my strength. I was in transplant clinic every couple of weeks for tests, lab work or breathing tests. My transplant team is so cautious (thank goodness!) that any little thing that comes up they want checked out. Little things did come up but nothing too serious. I felt as if this was a breeze compared to the whirlwind I had been through before and since transplant. I was well enough to drive myself to Norfolk for my appointments and I could do most things on my own again. The fall of 2002 I added two more days of exercise to my schedule. This was a harder class. It was faster paced aerobics (but still low impact), and included weights, floor exercises and sometimes some yoga. The floor exercises were really challenging to me because I still had trouble just getting on and up from the floor! I couldn't (and still can't) always keep up with the others but I give it the best effort I have! Without the exercise routine I developed, I really don't think I would be doing nearly as well as I am. My doctors tell me my breathing tests are so good because I give my lungs a good workout with my exercising. I was doing more and more all along. My husband and I had been back to surf fishing for a while, but I finally tried off-shore fishing again, which I had not done in while. Talk about testing those muscles!

(The scales and skin of fish carry bacteria, so when we fish, I do not touch the fish until it is cleaned, unless I am wearing gloves. Just one of those precautions my transplant center asked me to take because of my compromised immune system. Randy cleans, I cook! Also, another precaution I must take is plenty of sunscreen when outside. Transplant patients are extremely susceptible to skin cancer due to medications we take.) 2002 turned out to be a great year! It was a year of rebuilding, renewing, regaining, recharging my batteries and learning my limits. In early 2002 I finally stopped my IV antibiotics and nebulizers. I had some problems come up which are expected with any transplant patient such as medication levels getting out of whack, diabetic problems, restrictions related to being immuno suppressed, tiring easily (still needing that daily nap it possible) and learning to pace myself, etc. But, these are simple things that I can handle. My motto is "Don't sweat the small stuff", and all of that is small stuff.

In the spring of 2003, I had not forgotten the goal to climb the lighthouse and I felt I could accomplish it soon. I increased my exercise, to include walking several flights of steps several times a week. I knew that I could achieve that goal one-day. The Lord had walked a long way with me over the last few years, carrying me a lot of the way, and I knew He would be glad to walk with me to the top of that lighthouse. That lighthouse is like my kindred spirit, there is a bond that others may not understand. On May 17, 2003, I finally met my goal! I, along with my husband and a couple of friends walked up the 12 stories to the top, almost three years to the day, from the day of my transplant. It was a thrilling, exhilarating and spiritual feeling to reach the top. I felt like Rocky at the top of the steps! I had to stop and rest a few times on the way up but that didn't matter. That lighthouse and I have both weathered many storms but neither of us let them defeat us! I hope to make climbing the lighthouse a yearly ritual to celebrate my struggles and my accomplishments! To the left below, is our fishing trip off Hatteras , NC , July 2003. What a view of the ocean from the bridge of an off shore boat!

Despite all we have been through the last few years, my family and I feel like our lives have been enriched in many ways by the experiences we have had. I have never felt bitter or "mad at God", as I sometimes have heard people say when they experience struggles. I think the struggles have made my life better! I have had the chance to meet so many wonderful people that I would have otherwise never met. I have found that as you go through hard times in your life you learn to appreciate the beauty in life and in people, and in everyday things. I am on several different groups on the Internet and have learned so much from so many wonderful people I have never even met face to face. I hope that in some small way I am helping others too. Once I saw that God was going to keep me here awhile, I had to decide if I wanted to live or merely exist. I am choosing to LIVE! By my story I want others to see that obstacles get in our way and things don't go like we had hoped or planned, but we can't let them get the best of us. God never told us that life would be easy. We can overcome the hard times through prayer, determination, patience, positive attitude and pushing ourselves even when we don't feel like it or think we can! One of my favorite sayings is "Life gives us blessings and hurdles, you have to count your blessings and jump your hurdles!!" and another one of my new favorites, "Even if you are on the right track, if you just sit there you will still get run over". I don't know why God left me here... I do know that prayer had a lot to do with it, and that it was His will. I do feel He has a plan for me and I hope that I can fulfill it.

What is sad to me is that as I live on, someone died and that family is missing him everyday. I thank God daily for giving that family the strength, generosity and love of their fellow man, to donate his organs at such a difficult time for them. The donor and his family are the heroes here. I know that he was an 18-year-old, who had a traumatic accident. Although the hospital was not able to tell us much more than that, I have learned more about him through other families that my family met while in the waiting room in ICU and also via newspaper articles. I have written one letter to them, about a year and a half after my transplant. I wanted to write earlier but I was having such struggles. I decided to wait until I had good things to tell them about how I was doing. Unfortunately, I have not heard from them. Everyday I wish for a letter from them in my mailbox. I plan on writing another letter soon. I would be so honored to meet them or just talk to them. I know it would be difficult for them but I would love to try and express my thanks to them, and show them that in some ways their son is living on. Near the 3rd anniversary of my transplant I placed flowers on the altar at my church in memory of him and did a talk about the experiences I have had. I hope in some way I am promoting the importance of organ donation by being a living example of the success of transplantation. I have been to meetings at LifeNet, the organ procurement agency for my area. I am hoping to get involved in some Donor Awareness programs, but already I do a lot of one to one donor awareness with people I come in contact with everyday. I feel that others are more apt to consider being a possible donor when they see transplant recipients having good outcomes and experiences.

This has been a challenging but good experience. It is not something I would choose, but I feel it has made my family and me better by the experience. Although sometimes it was tough, and sometimes I lost faith in myself, I really kept my faith in God all along, and still do. I know that He will do what is best for me and I trust him. I really hope to stay here a while longer but I am realistic, and know that things can change so fast. I recently lost two dear transplant friends. This was very hard for me to except. Both of these friends had been doing well just months before. I plan on being here for years still, but then, I'm not the Master Planner.

Many people assume that when a lung transplant patient is doing well and looking healthy, that their life goes back to "normal" (what is "normal" anyway?).People look at you and say, "Well, you don't look sick." Speaking only for lung transplant patients, and really myself, I can tell you, your life is never "normal" again after a transplant, especially if you plan on staying healthy, well and out of the hospital. I am not saying your life is not good, my life is GREAT, and very worth it, just not "normal" based on what most people perceive as "normal". When living with a chronic illness or condition, there are so many things to be considered that many people, even the doctors don't realize or understand. Almost every single thing you do has to be thought out, often ahead of time (the type of things that others don't have to think about at all). Some examples of this are: you can't just sleep in late whenever you want, because you can't miss your meds. You have to plan your day out somewhat, because you have to consider when and where you will be when you have to take meds, insulin, etc. You may decide at the last moment you want to do something with a friend, but if I already have plans later in the day or the next day I have to consider my energy and stamina. When going to an event, you have to consider will you have access to water for meds if you can't take your own water. Also, when going to events or gathering you have to consider how crowded and in how close contact you will be with others, to decide if a mask may be necessary, especially during flu season or if kids are involved. When going to visit friends, I often get there to find that they forgot to tell me they or one of their children has the flu, a bad cold, etc., so we very politely leave or only stay a few minutes. When traveling, I have to make sure I have plenty of extra meds as you never know what may come up and delay your return. Also, when traveling far from home, most transplant patients are smart to look at hospitals in that area that are familiar with lung transplants patients, just in case. When I go watch my husband play softball or I am outside for other reasons and it is windy, I sit downwind of the dust or try to get out of it, or use a mask. The dust and dirt carry fungus that would not effect a normal person, but can and often do, give an immuno-suppressed person an infection that can be very severe. (The worse fungal infection I had was thought to be from road construction dust near my house.) If I want to plant flowers, my center asks that I wear a mask and gloves. I could go on and on! I am not saying these things to complain at all, just to make you aware that the fact that I have a chronic health condition is at most times on my mind, as is most likely the case with other transplant patients. I try to not live in a "bubble" but just use common sense. I try my best to stay healthy and well, which is the best way I can honor my donor and his family for the gift they gave me. I have found that to keep myself well and healthy, I have to maintain a great degree of self-discipline! The main things that I see that I must do daily and keep in the forefront are:

1) Keeping my medications extremely accurate every single day. Not keeping them accurate would be detrimental and is a matter of life and death. Managing taking around 42 pills a day is not a simple task, although you do get use to it. They have to be taken on time every day, especially the anti-rejection meds. I have to consider which meds may interact with the others, which need to be taken with food, etc., so I have several different medication times to remember throughout the day and also insulin. I take pills at 6am, at breakfast time, at 9am, insulin about 11am, pills at lunch and mid afternoon and at 9pm. This is my pills for one day A few have been added since this picture.

2)I am extremely cautious about being around germs, infections, bacteria, viruses, fungus or anything that could make me sick. Since my immune system is suppressed (not working properly) due to my anti-rejection medications, a simple cold, or infection that would not even phase someone with a normal immune system, may end me up in the hospital or worse. When I go to doctors offices or hospitals I usually wear a surgical mask, as do most lung transplant patients (and is recommended by my docs), to protect me against germs and infections of others. I have a whole new mindset when it comes to germs, I am always conscience of them. When I shake hands, with someone, or touch a grocery cart or a doorknob, it is not long before I wash my hands or pull out the Purell. Dust, soil, mold, mildew are all things I am very careful around. Transplant patients learn pretty quickly what to avoid, or what to wear a mask around. Germs are in places I had never thought about before my transplant. You have to learn to use common sense. If you do that, you can find ways to do most things without feeling like you are living in a bubble.

3) I need plenty of exercise and activity to help keep my body strong, help my cardiovascular health, help control my diabetes, help maintain my weight and help to ward off depression.

(Many transplant patients are on anti-depressants because many of the meds can cause depression. The complexity involved in keeping up with everything can be very overwhelming. I have been on anti-depressants, but I am not needing them at this time. I do have an anti-anxiety med I take if needed.) Many of my medications cause side effects that I have to deal with everyday, including hypertension and possible heart problems, diabetes, swelling, shakiness, stomach upsets, along with many other side effects that exercise can help to offset.

Prednisone especially weakens bones and muscles and the exercise and use of weights helps me to loose less bone density and muscle and helps to maintain what I have. I go to Parks and Recreation exercise classes usually 4 days a week unless I have an appointment. If I have to miss exercise classes for more than a day or two my body feels the difference. I also take walks, ride my bike and bowl on a regular basis. I try to see that I have some type of exercise type activity daily. Even with the exercise I am still pretty weak, especially my legs.

4) Preventive/Proactive Healthcare....I make sure I drink at least 2 quarts of water a day, at a minimum. Many of my meds are very hard on the kidneys and this often becomes another big issue with transplant patients, sometimes leading to dehydration, kidney failure, dialysis, kidney transplant or death. My doctors tell me one way to help avoid this problem is by drinking a lot of water, although that is still not a guarantee (I have learned there aren't many guarantees in life). Usually if you see me, you see my water bottle! Also along the lines of prevention and being pro-active, I have a Home Spirometer which is a portable machine that can test my breathing and can be an indicator that something is wrong. If my "numbers" start to fall, I would call my doctors, as this is usually an indication of rejection or some type of infection or problem. I am very in tune with my body. The slightest little thing "different" or wrong can easily turn into something big, so I try to always be aware. I call my coordinator any time I am unsure or have a question about anything and they always follow up. I always follow my doctor's orders. I have come too far and they have put too much effort and expertise in getting and keeping me well to not do what they say. If I disagree with them on something, we discuss it. Although I don't have nearly the number of doctor appointments or lab work I did in the past, I am still in doctors office or having lab work, or on the phone with an office every week or two if not more. Although they are looking out for you, you have to look out for yourself too!