TX Hospital Says...

It has been quite some time since Greg went to the transplant hospital for a check up. Of course, with anything like a double lung transplant, you are going to have to come back from time to time just to make sure everything is still working well. In Greg's case, he was given a great bill of health.

First, for those blood tests that came back already, everything was normal. Second, was his bone density scan in which he was told he has some bone loss and has osteopenia. Of course, we already knew this so it was nothing to be concerned about and nothing new. Then it was onto his CT Scan to look for those two spots that the local hospital saw on Greg's lungs when he was sick last. Surprise, surprise - there was nothing there! Just a set of healthy lungs. Oh! I also forgot the PFT lung function tests he took earlier this morning as well! He blew near 80% lung function on that tests! And, lastly was his appointment with the transplant doctors and transplant coordinator. They are very pleased and said that when he blew out for the CT Scan, he did it perfectly and when he inhaled there was a little junk but nothing abnormal. The pulmonary doctor wants to talk to the transplant surgeon about possibly removing Greg's stent that was placed around a year ago because he doesn't need it anymore.

Needless to say, we are very happy and this is a true blessing for us! We know blessed we are and thank God each and every day for this miracle and for Greg's awesome health. Remember, take each day as it comes for you never know what tomorrow will bring!

~Shan
http://www.angelcove.us
http://www.cafepress.com/donorawareness

Healthy Pain

We live in a country that is saturated with greed and overindulgence. Our society has gotten fat - both on money and in the very realistic body fat zone. The reason we have gotten this way is because it is easier to be fat then it is to be a healthy weight. Why? It is partly because of our upbringing but also because we are always stuck in high gear, always on the go, and always moving at the speed of light. In order to keep up with the fast pace of our lives, we need fast food.

Tony Robbins is a motivational speaker who talks about the pain verses pleasure principle. It is more painful to be a healthy weight then it is to be a fat weight. Some would think this is ironic given all of the medical conditions and mental anguish people who are fat go through but it is true. At my heaviest, I weighed 208lbs on a 5'5" frame. My Italian family said I was big boned and even at then tender age of 13, I remember trying to get my size 9 pants zipped up with a fork in the hole of the zipper to act as a force from which to pull it up while sucking in my stomach until it felt like it would come out of my back. By graduation from high school, I was a size 16 in woman's clothes and my family thought it was great.

Well, behold, I am now 130lbs and a size 4. My family thinks I starve myself but chocolate covered cherries would beg to differ. I joke with them with the statement: "Who would have thought that there was a small boned girl under the large boned girl!" And why am I this way today? It is simply that God gave me one body and to disregard this gift that he has given me, yes, that of my body, would be disrespectful. So, I cut back on the refined sugars, ate less bad fat, and started to exercise. Yes, I will admit that I fell off the exercise bronco for a while but two days ago, I got back on and even though my muscles are sore and I long for a bucket of cookie dough ice cream, I will return to the gym tonight with my wonderful husband and we may even stop by the local custard shop for a small scoop and no guilt!

~Shan
http://www.angelcove.us
http://www.cafepress.com/donorawareness

Priorities

It is difficult to juggle the every-day priorities that we have when interrupted by a nasty head cold. No, thank God, Greg has not gotten this head cold of mine but the cold just wont release its grip on me. I thought it was over this past weekend when, Sunday night, my face began to drain once again. Greg has been trying to be has helpful as possible but sometimes it is difficult because he has his own priorities. Last night he missed the chance to work out so that he could be home with me in order to watch the puppy while I slept. Normally having dogs shouldn't keep one from getting well but given that one of them is 11 weeks old and not housebroken yet, I needed all the help I could get.

It is times like these that we need to learn how to shift our priorities quickly. What seemed to be important one day loses its importance when someone in your family is sick or ill. When times like this spring up, you must rely on not only your intuition as to what is the best course of action but also logic. Sometimes the heart wants to do one thing while the most logical of courses is to choose another path. For us, the path to our health is most important and that includes taking care of one another. I have been there during his times of need as he has been there for mine. True, a transplant is a graver situation, but weight should not be given based upon what you believe to be important, but, rather, sometimes it must be defined by those you love.

Catch-22

Normally when someone has an suppressed immune system, you have to make sure they don't go around people that have colds. The problem is when a post transplant patient has a family member that gets sick and they live in the same house. That would be us! This morning I woke up with some dry sinuses and then my throat started to burn.

Now, you have to keep in mind that it is winter, all of the windows are closed tight, and my husband has a suppressed immune system. Sure, it is only a head cold at this time but any cold bug put Greg at a high risk of developing the same cold or something worse. Some people would freak out about now and stay in different houses (if possible) but it is not possible for us. And, no, Greg is not going to walk around the house in a mask. Over the years of illness and then being post-transplant, we have learned that we do not need to go to extremes in order to make sure he doesn't get this cold. First, and foremost, I load up on vitamin C, drink lots of fluids, and start popping some Cold-Eeze. Then, I break out the Lysol and anti-bacterial wipes. The Lysol is for the air and the anti-bacterial wipes are for everything I touch from door handles to computer keyboards. Everything gets wiped down twice a day so that Greg isn't at such a great risk. We also don't kiss (or do anything else intimate) and stay on different sides of the house.

It is impossible for Greg to live in a bubble - so we do what we can to protect his health - even when we are caught in a catch-22 where a sick person and an immune suppressed person are living together.

~Shan
http://www.cafepress.com/donorawareness

Life and Death

Yes, you already know how much we appreciate life and how blessed we feel we are but I am having difficulty understanding other people. People place so much emphasis on what they "need" in order to live and yet it is not a need but a selfish want that drives these people. It is strange to me because I don't understand what I truly want from life as it is but I know what I need to live - such as air, water, money (enough to keep the roof over our heads, insurance, food, etc.) and so on. Our Saturn's are fully paid for and are over 6 years old each and yet they get us from place A to place B. Some have made fun of us because we don't have new cards. We could afford a more expensive house but this house is sufficient for us at this time.

Then there are other people that want to die because someone specific doesn't love them, they don't have a new car, they had a fight with someone, or they don't have a huge house. Okay, when I was a teenager, I could understand this because I was a suicidal manic depressive teen. But with everything we have been through with Greg's health, I finally broke free of that thought pattern and now it is difficult for me to understand how people think that way. I just wish I could help people better understand - but I guess it is not my place to do so at this time - that is why I place my faith in God - that He will bring peace to these people and break them free of these thought patterns as well.

~Shan
http://www.angelcove.us
http://www.cafepress.com/donorawareness

Slight Scare

Sleep deprived because of the new puppy and trying to keep up with the normalcy of life, we woke up in a bit of a haze. Our attitudes were a little frayed and we were both easily irritated. But after everything we have been through in our lives together, we have learned that these times do pass and don't make that big of a deal of them.

After a while, we started to feel like our old selves again and gave each other a big hug. By this point, the winter wind outside had chilled my bones and as Greg gave me a hug, it felt that I was being hugged by a furnace. His body was way too warm. Immediately I told him how warm he felt to me and he took his temperature. It was a steaming 98.2 degrees! What a relief - it was just me. My bones were so cold from the Wisconsin winter that I had myself scared that he had a temperature and automatically, my mind started to flood with thoughts about what we needed to do and would he have to be admitted to the hospital. Thank goodness we both know how to remain relatively calm during situations like this because some may have started to panic rather than just have their mind wander. Such is the life of post-transplant patients.

~Shan
http://www.angelcove.us
http://www.cafepress.com/donorawareness

Getting the word out!

As you may already know, I run an online store called Angel Cove Organ Donation & Transplant Awareness. The store started as a fluke since I was only creating a design for myself that said "Organ Donation Saved My Husband's Life" and all of a sudden, everyone was asking for one. Well, that started a whirlwind of designing and I expanded this online store to include more than that type of design - such as: organ specific items, donor items, recipient items, and general awareness items.

Then one day it hits me - why not further promote the site and get the word out there? So, I contacted organ donation organizations and told them about the affiliate program my store has and that they can get up to 20% of the profits my store makes when a purchase is made through their link. They loved the idea and now my awareness store is displayed all over the Internet. It is great because not only does it help us offset the high costs of Greg's medical procedures and medications but it also brings awareness to the cause and helps non-profit organizations with funding. Wow! We are so blessed as it is because of Greg's health that it is amazing to think of all the help we are giving to others to have this blessing as well.

~Shan
http://www.angelcove.us
http://www.cafepress.com/donorawareness

Keeping up with it

It is surprising how life can have its ups and downs at the drop of a hat. One minute you are able to relax on the couch and in the next minute, you don't have enough time to blink. Since we just got a new puppy (now 9-week old chocolate lab), our schedule has been flipped upside down. We have been taking turns sleeping on the couch next to the crate and trying to get this little girl housebroken. But, with the watching of this new pup (so that she doesn't eat something she shouldn't or go potty in the house), we have little time to do our normal chores. Greg and I have agreed that no matter what, we need to concentrate on our health first and foremost. That means his medications are done on time and regularly as well as us making time to head to the gym in order to get our exercise in every other day.

Even though life often throws us a curve ball, we must be ready to act quickly. When you are stricken with a terminal illness such as Cystic Fibrosis or are a transplant recipient, you need to make sure that no matter what the pitcher of life throws at you, you are ready for anything. Sure, you may not hit it out of the field but you need to at least be ready to swing at what is thrown.

~Shan
http://www.cafepress.com/donorawareness

Stable and Settled

Everyone deserves a break from time to time. Of course, with a medical illness or condition, some cannot take a break from their medications and treatments. However, it is crucial that people take breaks from time to time - even if it is just to sit back and breathe. Tonight is that night for us - no phone calls, no working out, no chocolate labs bugging us - just our feet up and our bottoms down. Sure, Greg still has medications to take and a breathing treatment to do tonight but why not rest in the meantime. If people are too consumed with thinking about life and running in high speed, they will miss out on what life truly is about. Why get new lungs if you do not take the time to breathe?

What's Important?

Some place importance on money, some power, and yet others place power on material items. The problem is that this is what society has taught us. Then there are others that are caught in a blackhole and feel that importance is in those who pay attention to them and the more people they can get to notice them, the more powerful they are. Lastly, some see power in being authentic, knowing yourself, taking care of yourself and loving other people. It is amazing what people will do to gain the first two segments of the population.

No one seems to be content in what their life is. They blame other people for their own mistakes or for what their life is at that moment. Why? Quite frankly, our lives were going well but we felt we needed more so we added a few things to our lives and turned a blind eye to what would truly fulfill our lives. Now, we must continue down the path we have chosen and see it through - there is no turning back. Why did this happen to us? We are supposed to open to the world of possibilities, miracles, and know that life is truly important. Yes, we are but we are also human - we forget our way when we see the neon signs and blinking lights beckoning us to leave our path - even if only for a little while. Sometimes people can find their way back to the path, sometimes people have to make their own new paths, and sometimes they get stuck in a grove of thorns. Thankfully, we will find our way back to that original path but we are now stuck on a detour for a few months to get back there. We don't know what else will come up during this detour but we pray that we will be able to without injury to our mental, physical, and spiritual selves. All we can do is follow this path and do so following the love in our hearts. It is that love and the appreciation of it that is truly important.

Finally - Quiet

Yesterday was a very hectic day and by the end of my birthday, I felt like a truck had hit me. Why? Because I was alone with two puppies and very little sleep. On top of that, bad things were happening to me all day. Although I felt like my birthday couldn't get any worse, I was comforted at the end of the day but a loving hug and kiss from my husband along with a very sweet card. He had even decided to take on some of my responsibility last night for the nightly chores because he knew how bad my day had been. That, in and of itself, made my day 1000 times better. There was my birthday present - my husband.

Birthday Blessings

Today is my 32nd birthday and although I may joke about how I am 29 again, I really don't mind my age. Someone once said that age is just a number and you are only as old as you feel. Well, if that is the case, I am 17 again. (smile) Why? Because although I have a ton of responsibility, I don't let it get to me. Granted, today I felt a little like crying when I was sleep deprived from the new puppy and found out that there was no room at the doggie daycare for our 10-month old lab. Yes, we bring our one dog to doggie daycare because it helps socialize her so that she will be a better therapy dog down the line. It was supposed to allow me time alone with our new 8-week old puppy, since I have the day off and I wanted to begin her training. The two of them love each other but it is a lot of work to try to do everything at once.

But cry, I did not! I just remembered that things could be worse and that this will pass. It is only through hard work do we have positive outcomes, so I will just take it one step at a time. Also, I remembered that I am a human and they are dogs - they both have crates and can be crated for periods of time if needed. Like this particular moment - the 8-week old (Cheyenne) is in the crate while her 10-month old sister (Dakota) is sleeping on the floor. But, honestly, I did not start this blog to talk about my chocolate Labrador retrievers, but rather to talk about age and health.

Why? Because my birthday blessing is not only that I am alive to enjoy it but that my husband has hit another all-time high. He has broken through the barrier that one of his respiratory therapists told him he would never attain. She told him he could pretty much expect only around 50% lung function as his all-time high. Well, I am proud to announce that he has broken through that barrier with flying colors and is now sitting at 80% lung function! Yes, you read that right! Greg has 80% lung function with his new transplanted lungs. So, no matter how old I am or how old Greg is - this is what truly matters in life - the life itself - not the age! We have no idea how old his lungs are but what does that matter? He is alive and enjoying life! So, my birthday blessing is life and the lives of those I love - including Greg's organ donor and the donor's family. What a true blessing!

Happy New Year!

Although 2005 has ended, those trials that we have been through remain with us. It is not that we keep them alive but, instead, we use what we have learned to better ourselves and our future. Had Greg and I not worked together to get him healthy after his double lung transplant, we would not have learned how blessed we truly are and that we can overcome anything put in our path. There is a saying that what does not kill us only makes us stronger and although some people believe they cannot handle certain situations, they have such a great strength buried deep within that can get them through anything. I was one of those people that did not think I could even live through a hang nail let alone being a primary caregiver for someone with a terminal illness such as cystic fibrosis (CF). In the last 5 years, I have become a believer of the true power and testament of faith as well as believe in myself and my own strength to overcome things I would have never imaged before.

With the new year, please know that you too are strong enough to endure and work through the bad times. Never give up hope, faith, and remember to believe in yourself!

God Bless!