My Eulogy of Aaron

Here is what I read at Aaron's Celebration of Life Services. I know it's a little long, but I had a hard time editing anything out. Just want you all to know the person that Aaron was. 

Christopher Reeve once said, “A hero is an ordinary individual who finds the strength to preserver and endure in spite of overwhelming obstacles.” I think this sums up Aaron, and how he lived life. He never set out nor wanted to be a hero or an inspiration to anyone, but he truly was. Aaron showed us how to live and love life, even when we are at our lowest points, or facing great obstacles.

I still remember the first time that I met Aaron. I was 16 or 17 years old, and it was my first day of work at Central Maine Medical Center as a Certified Nurses’ Aid. I was already nervous, when I was told my first patient was someone with Cystic Fibrosis who spent a lot of time in the hospital. I went in to do his vital signs, and fumbled with the blood pressure cuff, due to my nerves. He made some joke about it, as only Aaron would. I was absolutely mortified. Little did I know that I had met my best friend, soul mate and love of my life that day. We didn’t start dating until a couple years later when I attended the University of Maine with him. Our relationship was built on the foundation of a deep friendship.

I always knew that our time together would be shorter than most, but I wouldn’t change or trade our time we did have together, 8 wonderful years, for anything. If I had a chance to go back and do it again, I wouldn’t change a thing, or give up that time we did had. I would choose Aaron and the love we shared, every single time. Every moment we had together, was truly a gift. We may have faced more obstacles in our 8 years together, than most people ever do, but those obstacles and challenges just brought us closer, and cemented our bond even more. Aaron asked me often in the beginning if I really wanted to start a relationship and fall in love with someone who may not be with me very long, due to his health struggles. His first lung transplant was coming up, and he wasn’t sure of the outcome, and wanted to protect me from getting hurt. Aaron was always protecting me and those he loved. What he didn’t know is that my heart had already chosen him and loved him. I had fallen under the spell of the famous “Sterling Charm” as he called it. We often talked about the future, “OUR future”- getting married, having children, buying a house, etc. and all of the wonderful things we would be able to do together. We both knew early on, within a few months or even weeks, that this was it- we had met our soul mate, life partner, and best friend. He taught me what it meant to truly love someone, unconditionally. Meeting and falling in love with Aaron is the best present I could ever have been given. When I try to imagine what life would be like if we hadn’t met, I can only see a blank space. Aaron was everything to me. As clichéd as this sounds, he completed me.

We had our struggles like any couple, but we tried to take advantage of time we were given with each other. We always made sure to say, “I love you,” at the end of every phone call, and whenever we were leaving to go somewhere, even for just a few minutes along with a kiss. We always wanted each other to know how the other was feeling- life is too short not to.

Aaron loved to do little things for everyone. He loved to get me flowers- just because or do something special, like cook a nice meal or vacuum the apartment to make sure I knew I was loved and special to him. For his first transplant, he orchestrated with his Dad to get each of the ladies of the group that were there during the transplant a single red rose from him. Aaron wanted to show his appreciation to all of us for being there and supporting him. In his last few months, he bought me a Kindle, something I have wanted for a while, as a thank you for standing by him. I told him that love and the promises we made in our vows to each other, mean standing by someone through the good times and bad, in sickness and in health, and that he would and was doing the same for me.

Aaron was the same with his friends and family- no matter what time it was or what he was doing, if someone needed to talk, he would stay up or drop everything and talk with them. Aaron was always available for a friend or family. If a friend was having a tough day or period of time, he would do whatever he could to help them work through it, and then make them smile or laugh. Aaron’s smile and humor was infectious, and it wasn’t long before you forgot your troubles, even for just a moment. Aaron always went above and beyond for his friends, family and those he loved. He had a huge heart, and jumped at the chance to help someone, and try to make their life easier. Aaron always said that if he could take away the hurt, the pain, the sadness, and the tough obstacles we all face, he would. He always wanted to take on everyone else’s burden, even though he carried a heavy one of his own.

Aaron always found a way to connect with someone he met, and he quickly, and easily made friends anywhere he went. He found something in common with a particular person, and bonded over that common interest- whether that was cooking, music, politics, hunting, fishing, home brewing, golfing, or any other thing he loved to do. Looking around at all of you, shows all of us, just how many lives Aaron has touched. Even just spending 5 minutes with Aaron, had the potential to change your life. I am humbled and heartened to see how many people loved and cared about Aaron, and were inspired by him. Even though he is gone, he will continue to live on through all of us, and the countless lives he touched. Aaron may not feel like he accomplished everything he wanted in life, but affecting, touching and changing the life of even just one person, can make a big difference in the world. He was a true an inspiration and teacher to us all.

As Abraham Lincoln once said, “It’s not the years in your life that count. It’s the life in your years. “ Even though Aaron only had 30, years, he did more living in those 30 years, than many people do in a lifetime. Aaron loved life, and wanted to squeeze every second and every minute out of every day. He hated to go to sleep at night, even as an adult, afraid he would miss something going on. No matter how horrible he felt, he still went out with friends, played golf, cooked, hunted, fished, home brewed, cross stitched, among many other things.

I have asked on my facebook page for everyone to share with me their favorite memory of Aaron. I am also asking that you please take one of the index cards on the table near the guest book, in order to write down and share a memory or two of Aaron. I know that many of you have several wonderful memories, and I love reading them. I haven’t given my favorite memories yet, because I wanted to share them with you all now. It’s so hard to sift through 8 years of memories and pick just one. I think my favorite times with Aaron are the many days and nights we spent at home together, just the two of us, cooking dinner, curling up on the couch together to watch tv or a movie, or even just talking, or sitting on the deck playing cribbage or some other game, which Aaron ALWAYS won. I loved the nights we set up Aaron’s telescope to look at the moon and stars and talked about the Great Beyond. Even though we spent pretty much 24 hours a day together, we NEVER ran out of things to talk about. We never grew tired of spending that time together and tried to take advantage of every minute we had together.

Aaron always took care of me and tried to protect me. He always indulged my little quirks and fantasies- let me follow Blake Shelton around NC and eventually meet him, always let me have the remote and watch the shows I wanted, and he never complained or went in the other room. He put up with it and watched with me and said it was a way he could spend time with me. Aaron even wore the hat I knit him, which was ONLY a few sizes too large, almost every day in the winter because he appreciated the effort and didn’t want to hurt my feelings. Instead of stuffing it in the back of the closet, never to be seen again, he wore it with pride. He loved that hat because I made it for him.

Aaron was a master chef and loved to cook for our families, our friends and me. Aaron was an unbelievably good cook, and he always made it look so easy. The only problem when he cooked is that he felt the need to dirty every dish and utensil in our entire apartment. He would plan out menus and meals ahead of time, and loved to host and entertain. He was a perfectionist in everything, and things never came out quite to his liking, but we all thought everything was delicious. He always made Easter dinner, corned his own beef for St. Patrick’s Day, and loved to plan many meals in between. Thankfully I always had him to cook for me because the few instances where I tried to cook for him, didn’t always go well- for example the one day I tried to make sausage and biscuits for him for his birthday, and ended up getting flecks of the cast iron skillet in the gravy. Even though he was a great cook, there are a few instances where experimentation went wrong. I remember Aaron was cooking some duck breasts for us, and the directions said to get the cast iron skillet white hot. Well, Aaron took that pretty literally, despite my protests. The minute he put the duck breast, fat side down in the pan, it flashed, and smoke immediately filled our apartment. I had to open both doors-front and back, and every single window in the entire apartment. I made him take the duck out of the pan and let it cool down, but it took a long time for the smoke to clear and the smell of burnt duck to leave the apartment. Needless to say, we never made duck again. There was also an occasion with our close friends in North Carolina, Dana and Casey. Dana also has CF and had a life saving double lung transplant over 11 years ago. They were vacationing in the Outer Banks, and invited us along for a few days of respite. Aaron and I wanted so badly to make them a “thank you dinner.” We were going to cook something on the grill, but it was too windy. Aaron had Casey put the pan on the stove to heat up, but then the pan was forgotten about a little too long. Aaron went to put the butter in the warm pan and swirl it around. He realized a little too late that the pan was too hot, and it wasn’t long before the butter caught fire, and we had some pretty tall flames. Another mistake was made when the hot pan was put on a pot holder and ended up melting and burning the pot holder as well. Dana and I were screaming thinking we were going to set this huge, expensive beach house on fire, and Aaron calmly put the fire out. We have definitely had a lot of laughs about that.

Aaron also loved to brew his own beer. His last batch is still sitting in our bathroom, waiting to be bottled, but it was definitely a batch that I will never forget. Casey came over to brew Raspberry Lambic with him. I spent most of the day on the deck, but ended up leaving for a few minutes. When I got home, I found Casey and Aaron in the kitchen trying to clean up the brew that had spilled all over the kitchen floor (the brew was too hot when they poured it into a special plastic fermentation bottle, and the bottle ended up shrinking, causing the brew to spill all over the kitchen floor. I am just thankful they didn’t do this on the carpet). I figured that would be the last of that home brew I would have to clean up, but later on that night I was sitting in the living room and suddenly heard a hissing noise coming from the bathroom. It was 2 in the morning and Aaron was sleeping. I ran into the bedroom, and said, “Aaron I think your homebrew is hissing.” He ran into the bathroom with me, just in time to see a geyser of red beer shooting out from the brewing bottle, reaching the ceiling and flying all over every surface in the entire bathroom. He just stood there watching this geyser, while I yelled, “DO SOMETHING about it, don’t just watch it.” Finally we were able to stop it, and we spent the next few hours cleaning the entire guest bathroom- walls, ceiling, sink, shower, toilet, floor, etc. Like I said, it will definitely be a batch of beer, I will NEVER forget.

I loved all of Aaron’s little quirks- his interesting choice of clothing- those wonderful plaid 70s golf pants, of the faux suede pants and red plaid shirt he just had to get when we were in Quebec, the fact that you could never get a great picture of him outside, unless he had his sunglasses on (can’t count how many pictures we have of us where Aaron is making the most ridiculous faces), his love of music, politics, and his very sarcastic and at times, twisted sense of humor. There was hardly an hour that went by when we weren’t laughing at something, usually some comment made at my expense.

I carry in my heart so many wonderful memories, and it’s hard to just pick a few. I will always remember the love and laughter we shared. He always knew just what to say to make me smile on all those hard days, and a simple hug could make everything right with the world. Aaron hated to see anyone sad or cry, and wished he could take the sadness away, which is true with anyone you love. Aaron always made me feel like the luckiest girl in the world, and like the most beautiful girl, even at my worst, or the many moments where I feel far from beautiful. Forget asking Aaron for an honest opinion on a haircut or outfit- he would tell me I looked beautiful without even looking, saying he loved everything I wore and liked my haircut and color anyway I did it. Aaron had a way of making me feel like I was the only person in the world that mattered, and I know many friends who feel the same way. Aaron had a way about him, so that during most conversations, he made it seem like he was always listening and whatever you had to say was important.

Aaron was someone who was always thinking about someone else, saying that what he was dealing with was minimal compared to many others around him. He always felt that someone else had it worse. He never once complained about the hand in life he was given, he just did the best he could with strength, perseverance, grace, dignity, bravery, and love. Aaron embraced life, love, family and friends, the important things that may seem small, the things we neglect or take forgranted, but they are the things we remember most when we look back. He always went out of his way to help someone with their own burdens- whether answering questions about life after transplant, sharing his own experiences, or helping someone work through a problem. He was an amazing man, who continues to inspire me to live life to the fullest every single day. Aaron was a fighter and he was strong, courageous and humble until the end, and I am a better person because of Aaron.

I wanted to leave you with a few things. The first one is from our commitment ceremony:

 I cannot promise you a life of sunshine

I cannot promise you riches, wealth or gold

I cannot promise you an easy pathway

That leads you away from change or growing old

But I can promise all my hearts devotion

A smile to chase away your tears of sorrow

A love that is ever true & growing

A hand to hold in yours through each tomorrow

This passage is from a book called “The Meaning of life”

“Love, in all its fragile forms, is the one powerful, enduring force that brings real meaning to our everyday lives. The love I mean is the fire that burns inside us all, the inner warmth that prevents our soul from freezing in the winters of despair. It’s the love of life itself. It’s the voice that says, “Celebrate life, be creative!” It brings with it the passion and understanding that some things in life are worth dying for, but there is so much more worth living for.”

I love you, Aaron T. Sterling. Thank you for teaching me that nothing is impossible, and to cherish every moment. You touched my life profoundly, and I will forever be grateful for the short time we had together. You have shown us all how to truly live life with no regrets. You will forever be in my heart and thoughts, and will live on through all of us, the people whose lives you touched, and our wonderful memories. In our vows, we didn’t say, “Until death do us part,” but instead we said, “You are my soul mate, and my best friend. I would be honored to be your life partner, not only ‘til death do us part, but for eternity and forever more.” We knew our love for each other wouldn’t end at death, but continue on. I will love you always, and I won’t say goodbye, but instead, Until we meet again.

I’ll end with a poignant quote:

"Some people come into our lives and quickly go, some stay for a while and leave footprints on our hearts. And we are never, ever the same." 

Heaven Just Got Another Angel, Rest in Peace Aaron T. Sterling, Breathe Easy

This afternoon Aaron T. Sterling lost his long struggle. He passed away peacefully, at 2:14 PM in my arms, and us (me, his parents, brother and sister-in-law) by his side. To say he was an important part of our lives would be an understatement. He will be deeply missed, not only by us, but everyone who knew him. We miss him already. As we make arrangements to celebrate his life, in North Carolina and in Maine, we will let you know. Your support has been invaluable to us, and we won’t hesitate to lean on you if we need to. May he rest in peace, and breathe easy. Heaven got another angel today. I love you Aaron, always and forever, until we meet again. It just doesn't seem real.

Kellie, Debra, John, Tyler, and Danielle

A Long Update, Riding an Emotional Rollercoaster, Holding onto Faith and Hope, and Praying for a Miracle

Been a very, very long day. I am going to apologize right off about the length of this post. I know it is long, and I know not all of you want all the little details, but I needed to just get it all out, and I know there are quite a few of you that want an update on Aaron and what is going on.

Aaron's nurse tonight let me stay almost 3 hours past the MICU visiting hours just sitting with him, holding his hand and telling him how much I and everyone else loves him and to keep up the good fight. He seems to have leveled out a bit tonight. He is on a lot less blood pressure meds (he was put on a second one this morning, and is still on 2, but the dosages of one are a lot less. His blood pH, affected by high carbon dioxide levels, which has been very low, is slowly coming up, allowing the blood pressure meds to work more effectively. He is still having continuous high fevers around 102-103 that even Tylenol isn't doing much to break/bring his temperature down, and they have a cooling blanket on him hoping that will help. I brought up the idea of possibly giving him IV Tylenol (IV Tylenol is actually brand new here in the US- they have been using it in Europe for years now, and it seemed to really help break the high fevers when he got it in July, so we are hoping it will be just as effective now), instead of the oral, since he doesn't seem to be responding, and may not even be absorbing the oral (they crush up the pills, along with his other pills, dilute it in water and put it down the tube he has from his mouth into his stomach. He is on tube feeds through another tube that goes from his mouth into his small intestine- this prevents aspiration/food, stomach acid, fluids from going down into his lungs. He did have a stomach wrap to tighten where the esophagus meets the stomach to prevent acid reflux and aspiration, since both are very damaging to lungs, especially transplanted lungs). We are hoping that the IV Tylenol will be much more effective. They have started him on another IV antibiotic, one they don't use often and especially not in adults because it is so tough on the kidneys and is kind of a drug of last resort. He has cultured mucoid pseudomonas in his sinuses (they aren't convinced that that is the reason he is having fevers of almost 103 or why he has gone downhill today. It may not even be in his lungs or making his sick at all. People with Cystic Fibrosis normally are colonized with some type of pseudomonas, especially because CF causes thick mucous and secretions, particularly in the lungs and sinuses, and due to the think mucus, it is almost impossible to completely get rid of the pseudomonas, and it stays in the body. It doesn't necessarily make you sick or actively infected, but just sits there. Because of a lot of pseudomonas sinus/lung infections/pneumonia, people with CF end up getting treated with several very powerful antibiotics throughout their lifetime, and because they can't completely eradicate the pseudomonas, it builds up resistance, making it more difficult to treat, and sometimes to the point where no antibiotics can effectively treat the infection. Hope that makes sense- been a long day, and I may not be explaining things as well as I could be) that is normally pan-resistant (meaning resistant to all known antibiotics), but they are trying to get sensitivities on it anyway to see if any antibiotics would work that he isn't already on- unlikely. The colistin (antibiotic) can be used for the mucoid pseudomonas. They are giving it to him every other day, trying not to be too tough on his kidneys.

His kidney function is getting worse every day, and today is pretty bad. He is not making a lot of urine, and that concerns them, as his kidneys aren't working like they should. Due to his kidney function and the fact that his proteins are low (allowing fluids to leak out of his blood vessels into his tissues), he is very, very swollen and probably has a good 25 pounds of extra fluid in his tissues, if not more. They are trying to give him diuretics, but he isn't responding as well to them as he has in the past. He did put out a little bit more from the lasix tonight, and they just gave him a pretty big dose, hoping to jump start his kidneys and get some fluid off. If that doesn't work, they may either put him on a diuretic drip or start continuous dialysis over the weekend to get some volume/fluid off of him. Especially with lung infections and lung transplant patients, any extra fluid tends to go directly to the lungs, and they cut the lymphatic/drainage system during transplant, so the lungs aren't able to drain themselves. The fluid can definitely cause problems in his lungs and with his ventilation. As the transplant pulmonologists always say, "Dry lungs are happy lungs." Just because they put him on dialysis for the weekend, doesn't mean that he would necessarily be on it for good if he makes it through this. His kidneys just might need a break and some help for a few days. The other issue with using diuretics is that it can drop his already low blood pressure even more, which would then call for an increase in the meds they are using to increase his blood pressure already. They have to give the body time to shift fluid from his tissues back into his vascular system, after they give the lasix

His last blood gas looked better than this morning's so they are holding tight on the oscillatory vent settings- 60% oxygen and 7 breaths a second/420 breaths a minute, not needing to go up of the settings and support, but not being able to come down anymore either. They have left the mean airway pressure at 26 or so, he needs to be at 20 before they would consider weaning him over to the conventional vent, but that is a while in the future, if he makes it through this (He is on a lot of medication for sedation as well as paralytics- he is requiring a lot of sedation as his body builds up a tolerance to the medications, and it takes a lot to suppress your natural drive to breath. He was still taking breaths on top of the oscillator, and that can be very detrimental for him. As was mentioned in a previous update, because you are getting so many breaths a minute, the oscillator basically holds open the lungs and alveoli, and any "natural" breathing can squeeze those alveoli shut and he an de-recruit (the process of opening up the lungs and alveoli is called recruitment, basically recruiting lung tissue and alveoli to do the work of ventilation and perfusion). It is basically like you are continually breathing in and not exhaling, or pushing air out of your lungs. It provides a much more constant pressure than a regular vent, which is less damaging to the lungs because of the more constant and lower pressures and the lower oxygen requirements.

Aaron was also having a problem called "shunting," which is another reason they put him on the high frequency oscillatory ventilator. "Shunting" has to do with the heart. When you are a developing fetus, there is a valve or hole between the two sides of your heart called the Patent Foramen Ovale or PFO. The placenta is supplying the oxygen and removes the carbon dioxide from the fetus's blood, as the fetus isn't breathing or able to do that exchanged in their immature lungs. The PFO allows blood coming from the rest of the body that is oxygen depleted, to bypass the lungs and mix with the blood that is usually oxygen rich in the other chambers of the heart. When you are born, the PFO is supposed to close on it's own (some babies and children end up having surgery to permanently close the hole, since it wasn't able to close on it's on). Aaron's PFO seemed to have closed on its own when he was a baby, but due to his lungs being sick, and the high variable pressures from the vent (and being maxed out on the traditional vent settings) the PFO somehow opened again like a valve. By putting him on the high frequency oscillatory ventilator, they are able to keep the pressures a lot more consistent since he isn't breathing in and out, and he doesn't seem to be shunting anymore. It was very noticeable whenever he got too wakeful or they would move him, as his oxygen saturations would drop, due to the non-oxygenated blood coming from the rest of his body before it goes to the lungs, mixing with the freshly oxygenated blood coming from his lungs. Anyway, sorry if that was a complicated explanation, I don't quite know how else to phrase/explain it.

Had a big family meeting with the doctors (lung transplant pulmonologist, who is also the medical director of Duke's lung transplant program and the one Aaron mainly sees, the MICU doctors and Aaron's nurse this afternoon to discuss the situation and the rapid decline that happened this morning. The doctors just feel like he is septic again (systemic infection/systemic inflammatory response to a very bad infection). He has a very bad MRSA (multi-resistant/methicillin-resistant staph aureus pneumonia/infection. He has also grown out a fungus in his lungs called Paecilomyces lilacinus, but that is sensitive/susceptible to the anti-fungal he is currently on (meaning the antibiotic/anti-fungal is able to to treat the particular bacteria/virus/fungus). They are also now treating the mucoid pseudomonas that grew out of his sinuses with the colistin as I mentioned above, even though they don't believe that it is contributing, but we all figured we might as well try it, we don't have much to lose. He is on a total of at least 6 total IV antibiotics/antivirals/anti-fungals, not to mention several oral antibiotics. He is pretty much being covered for everything, and transplant infectious disease is keeping a close eye on everything, making sure he is covered for just about anything.

They had to stop the inhaled antibiotics when they put him on the oscillator, since there is no way to break the "circuit" to hook them up, as the machine is very sensitive, and anytime you stop the oscillator for suctioning the lungs, bronchs, inhaled antibiotics, you lose some of that lung "recruitment" that I mentioned earlier, and it can actually cause setbacks that may require at least 12 or more hours to get back to where you were, so they try to avoid that at all costs. They do briefly stop and start the oscillator (for about a period of 5 or so seconds) in what's know as a "Recruitment exercise" to try to get more alveoli and lung tissue open and moving air. It seems like they do it once a shift or twice a day, but I'm not positive. Stopping it for a few seconds, is a lot less that stopping for 10+ minutes for suctioning, branching, etc.

They did treat Aaron for possible atypical rejection with 3 days of high dose IV steroids, hoping he would respond like he did in July, but that didn't seem to do much, and possibly made the infection even worse, but we don't know and can't prove that. They figured they had to try something else mid-week since he wasn't making the progress that he needed to be. The first dose actually seemed to help with the fevers and low oxygen sats, they were able to wean down some on the oscillator, but the next two doses didn't do much, and he seemed even to get worse. They are keeping him at a higher dose of steroids now than he normally takes because they have to taper down the steroids, but they are thinking about keeping the dose at 60mg instead of 20mg for the time being to help with any inflammation or possible rejection.

One of the reasons that he is having such a hard time fighting this infection despite the very powerful and numerous antibiotics that are supposed to work for the infections he has, is that he has absolutely no immune system to fight the infection with. The antibiotics can only do so much, and your body has to do the rest. Due to all of the harsh and numerous treatments he has been given for chronic rejection, they have almost completely wiped out his immune system, making it very, very difficult to fight any infections, and can make any small infection turn into sepsis and a life-threatening infection. The steroids are also a rejection treatment/immune suppressant, which makes fighting the infection that much harder, and it could cause a flare-up of an existing infection, or flare-up and cause a secondary infection.

Anyway, I think that that's it. Sorry for the very long and detailed post- with more details than you may want to know, but getting it all out helped me, and I figured this would give you all a thorough update on the situation. Aaron's body just needs to start fighting this very nasty, severe and life-threatening infection, since there really isn't anything they aren't doing or covering him for. We are basically hoping and praying for a miracle, as things really don't look good right now. The doctors are very concerned and frustrated with these downhill slides (well more like downhill leaps or jumps), and hope to stabilize him. They are basically giving him the weekend to see how things go, and if there is no improvement or things are getting worse, then we will meet again Monday, and decisions will have to be made. We are really hoping it doesn't come down to that.

The doctors reiterated today that Aaron is a fighter, very strong and an amazing guy. If anyone can come through this, he can. He isn't at transplant candidate, as he would never survive it, and it's not worth putting him through that right now. Duke has never done a third lung transplant, and not many have been done in the world- a third lung transplant is extremely rare, but the doctor (who is also the medical director/head of the lung transplant program here at Duke), said if they would ever consider doing a third transplant on someone, they would do it for/with Aaron. They know how much he loves life and is willing to do what he needs to do to live and have a good quality of life. Things really aren't looking good right now, but we are holding onto hope, and know that Aaron is strong and a fighter and not ready to give up just yet. He seems to have stabilized some tonight (hoping I am not jinxing myself by saying that), but he is extremely sick- can't get a whole lot sicker. He really needs to not just stabilize but make improvements, no matter how small.

We are praying for that miracle, and the doctors said that's pretty much what we need right now. Please continue to keep Aaron and his family/friends in your thoughts and prayers. Pray and hope for that miracle along with us. Hold onto hope that he can get through this. I have already gone through many stages of grief (anger, bargaining, depression, etc.), and have cried a great deal of tears. You would think after a while you would have nothing left to cry out, but the tears keep coming. We are all so thankful and overwhelmed by the love, support, prayers, thoughts and kind messages you send.  It gives us all great comfort from those of you that have reached out and are asking friends and family to pray for Aaron. Aaron has certainly touched a lot of lives and continues to inspire so many, me included. I am blown away by his strength, courage and fight. He is an amazing man, and an amazing husband. I could not ask for a better partner in life, and have been/am so lucky to have him in my life and by my side. He truly is my soul mate and the love of my life, and my heart is just breaking right now. He is my rock, and always knows how to make my world a better and happier place, always the ray of sunshine when things are tough. I am very scared and worried, but holding on to hope and faith, and the strength, love and support from all of you.

We are blessed to have such wonderful people, all of you, in our lives. Situations like this show just how many people are there for you and care about you- wish it didn't take something like this for that. Hold on tight to those you love, hug them, kiss them, and tell them everyday how much you love them and what they mean to you. Aaron and I have always said I love you and given each other a kiss every time we part ways, even for just an hour, because you never know what can happen, and wanted to make sure the other knew how much they were loved. As John and Debra said, I don't want to be macabre, but hold on tight to those you love. I have quickly learned just how unfair life is, and this truly, truly sucks. There are no other words to describe it. Right now I am not OK. The love of my life is fighting for his life, and I feel so powerless and helpless. All I can do is hold his hand, rub his head, talk to him, tell him I love him and to keep fighting/stay strong.

This Mother Teresa quote reminds me so much of Aaron, and he often quotes it to me, " I know God will not give me anything I can't handle. I just wish He didn't trust me so much." Anyway, I will stop writing now. Just feels good to get this all out. Sorry for the long post. I just can't adequately describe or put into words my thoughts and feelings, but getting it all out, not bottling it up inside, is cathartic. Keep hoping and praying for that miracle and some progress. Spending the night in the MICU waiting room just to be close by. We live only 10 minutes away, but right now, it's 10 minutes too far. Thank you all again for the thoughts, prayers, support and love. It means more to all of us than you'll ever know.

I'll leave you with this quote from Christopher Reeve that a friend posted on my Facebook wall today: "A hero is an ordinary individual who finds the strength to preserver and endure in spite of overwhelming obstacles." This truly reminds me of Aaron.


-Kel


P.S. I love you with all of my heart, Aaron T. Sterling. Hang in there and keep on fighting. You have a lot of people who love and care about you. You are an amazing man, and I am the luckiest girl in the world to have you by my side and in my life. Remember the song I have been singing to you "I Won't Let Go" by Rascal Flatts:

It's like a storm
That cuts a path
It's breaks your will
It feels like that

You think your lost
But your not lost on your own
Your not alone

I will stand by you
I will help you through
When you've done all you can do
If you can't cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go

It hurts my heart
To see you cry
I know it's dark
This part of life
Oh it finds us all
And we're too small
To stop the rain
Oh but when it rains

I will stand by you
I will help you through
When you've done all you can do
And you can't cope
I will dry your eyes
I will fight your fight
I will hold you tight

And I wont let you fall
Don't be afraid to fall
I'm right here to catch you
I wont let you down
It wont get you down
Your gonna make it
Yea I know you can make it

Cause I will stand by you
I will help you through
When you've done all you can do
And you can't cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go
Oh I'm gonna hold you
And I wont let go
Wont let you go
No I wont

"I Won't Let Go"

Rascal Flatts performing "I Won't Let Go." This is for Aaron. I love you! 

More Bumps in the Road

I figured I would try to give a short synopsis of what's been going on with Aaron for the past few weeks and more detail about what's going on right now.

As most of you know, Aaron just spent six weeks in the hospital. We were home for about 2 weeks before he was re-admitted on Monday. His last hospital stay, he came in, was treated for infection, but despite several broad spectrum antibiotics, he continued having fevers of 102.5 and shortness of breath daily. They did another bronch, and weren't able to figure out what was going on through that. Because they had no idea what was causing his problems, they decided to do an open lung biopsy to get a larger piece of lung tissue and more cultures. They also wanted to try to remove some of the fibrous tissue on his left side in order to allow his left lung (mainly the lower lobe) to expand, and to get some airflow through it. We were hoping that we would get a definite answer for what was going on when the results came in, but the results came back inconclusive. A few days after the open lung biopsy, Aaron's breathing and respiratory status ended up declining to the point of needing to be put on a ventilator. They weren't very optimistic, but after some steroids and IVIG (both treatments for rejection), he started showing some improvement, and was able to get off the ventilator in two days. They believe that he started by having an infection and ended up rejecting both of his lungs (Normally someone who has had a double lung transplant has two lungs from the same donor, and would normally reject both, but where Aaron had a living donor transplant- 2 different donors, and since they only replaced one side when he had the re-transplant, he has two different lungs (one is really only a lobe) from two different donors, so he can reject one and not the other or reject them differently and with different severity), and with the steroids, IVIG and antibiotics, they were able to finally get him off the oxygen and then home. He was very weak and had a lot of recovering to do, but he was doing better. He had started going to pulmonary rehab to work on getting his strength back and to try and recover some lung function. He was able to do three sessions so far (they go from Monday-Friday for 3 hours a day for a total of 23 sessions).

Now to what brought him in this time. He had been doing fairly well for 6 weeks in the hospital. On Thursday, he had some shortness of breath, his lungs sounded wet (like there was fluid in his lungs), and had a low grade fever. He took some Tylenol and lasix (a diuretic) and that seemed to help. He had an ok day on Friday, and then on Saturday, he started getting short of breath and sounded wet again. He didn't have a fever, but he took lasix again (he really has been having a hard time with his kidneys and with fluid going straight to his lungs, so he takes lasix as needed). This time the lasix didn't seem to help much, and the same on Sunday. We decided that we would call his coordinator first thing Monday morning and see what they said. Monday he wasn't doing any better and ended up with another low grade fever. We decided to skip the lasix since it wasn't really making a difference, and we didn't want to dry him out too much. His coordinator had him come in for a bronch to see if they could dilate his airways and figure out what was going on. He was on no oxygen at home and his sats were ok, but by the time we got to the bronch suite his sats dropped into the low 80s (they should ideally be above 93%). They put him on 6 liters of oxygen and went ahead with the bronch, but said they would most likely admit him. After the bronch, he wasn't any better so they admitted him to the normal pulmonary floor where he always is when he is admitted. He was doing ok when we got up there, but over a period of the next 45 minutes he starting with rigors/shaking/chills, went from no fever to 102.5 (taken under his arm, so his fever was higher than that), and went into some respiratory distress. They did a blood gas on him to see why he couldn't breathe and why his sats were so low even with being on a lot of oxygen. His carbon dioxide levels were high, his pH was high and his pO2 (which measures how well the oxygen you are breathing in is attaching to your red blood cells), and that was very low for the amount of oxygen he was on (100% via a non-rebreather face mask). His blood pressure was also quite low. They decided that he was way to sick to be on a regular floor and that he needed to be transferred up to the MICU (Medical ICU). They gave him a small amount of fluid, but that seemed to go to his lungs and so they gave him more lasix. The tylenol started wearing off and he spiked a fever of about 103 (also under his arm), and his breathing was getting more labored. He was very sick. I went out and sat in the waiting room, planning to spend the night there because he was so sick. Around 3:30AM, his nurse came out to get me, and said he needed to talk to me. They were talking about putting him on bi-pap because of his breathing and sats, but as we were talking about it, they said that they were most likely going to have to intubate him, but we could try the bi-pip first, but would still most likely need to intubate, though it was up to him what he wanted to do. After talking about it, Aaron decided to skip the bi-pap and just have them intubate him. He was working so hard to breathe, was just so tired and just couldn't keep breathing that way, and if they were going to have to do it anyway, they might as well just do it. They also had to start him on some medications to raise his blood pressure. Due to the infection they think he has (he is septic, a systemic infection), his blood pressure was bottoming out (60s-40s/40s or so) and they needed to do something to bring it up, and with is fluid sensitivity with fluid going to his lungs, they couldn't just pump him full of fluid. He has a port-a-cath, but they needed more access than that, so they put in a triple lumen IJ (Internal Jugular Center Line), and an arterial line. Once they intubated his blood pressure dropped even more due to sedation and being so sick, and they put him on the maximum dosages of the maximum number of pressers (medications to raise his blood pressure)- 3 different meds, and he was still low. With the IJ line, they are able to check his fluid status and blood volume, and it ideally should be between 10-12, and he was 2, extremely low and dehydrated, so he received well over 8 liters of fluid to try to correct that, and thankfully it is now in the normal range. His kidneys weren't producing much, and still aren't. They are talking about now trying to get some of that fluid off of him because he may have gotten too much. Tuesday morning was very touch and go. Between his blood pressure, fluid status, and needing to be on maximum vent settings/support and still not satting where he needed to be. They said that he is much, much sicker than even last time when he was on the vent and not doing well. Unfortunately the cultures they got from the bronch and the blood and urine didn't grow anything. They know that he has an infection, but they can't seem to pinpoint what it is. His severe immune suppressed/compromised status makes it tough for them to grow much.

He has definitely made quite a few gains over the past couple of days. By Tuesday late morning, he was down to 2 blood pressure medications, and then last night they stopped another. He may have to go back on the second, if they decide to give him the diuretics, because that will drop his blood pressure. He is still on the other blood pressure med, but that is ok for now. He is no longer on the maximum vent settings, but he is still on a lot of support. They are trying to lighten the sedation so that he is aware and awake, and they want physical therapy coming in and working with him. They expect that he will be on the vent through at least the weekend, and are hoping he could come off by Monday, but if not they may do a tracheotomy in his neck and would ventilate through that so he could get up and waking. They are hoping he will be more responsive by the end of the day (he tries to open his eyes, raises his eyebrows, can turn his head towards sound and squeezes your hands sometimes. He is still very sleepy and doesn't always respond but he is definitely more responsive now). He is making progress and going in the right direction.

I finally went home last night. I had been staying in the hospital since Monday afternoon, and spent two nights in the waiting room, but he was stable enough last night for me to feel comfortable going home, getting a shower and some sleep. Looking forward to him being more awake and able to communicate some. With how his kidneys are doing, it could take a while for the sedation to clear out of his body. He is definitely a fighter! I'll try to keep updating as we go along. It's been a long few days and our focus has really been on him. Anyone has any questions, feel free to ask! Hope all of this makes sense. Things are improving, slowly and baby steps, but we are going in the right direction. Thanks to everyone for the love, support and messages. They mean a lot to all of us! Sorry for the length of the post, but I wanted to let everyone know what was going on!

Long Over-do Update on Aaron

Sorry I haven't blogged in quite a while. Aaron has been in the hospital for almost 5 weeks, and at times he was very, very, very sick. I just haven't had much chance/time/energy to sit down and just do it. I should have been posting updates here and on Facebook simultaneously, but didn't. Once I get caught up I will definitely start doing that. He is still in,but making some small progress everyday. I am not going to go into the whole situation now, it will probably take me a couple hours to type that all up and make sure I am not forgetting anything, but I figured since this was such a long update, I would post the whole thing here, and only bits and pieces on my Facebook page, but I promise I will blog about the whole situation and what happened soon. Aaron is doing ok- still a ways to go and probably will be quite a few more bumps in the road, and he isn't completely out of the woods yet, but we are slowly getting there. Here is the update for everything that happened with him on Friday night, into Saturday. I truly apologize for the length.

Aaron was moved today from the cardio-thoracic (mainly surgical) step-down unit and up to the regular pulmonary floor, where all pre- and post-lung transplant patients go if they are hospitalized. He is happy to be back up to the floor he is used to with all of the nurses he is used to. They are definitely more adept at caring for post-transplant and CF patients than most other floors, and realize that you know your body best. It's a huge step to go from ICU and intubated to up into a regular hospital room in just a few days (he just left the ICU last night). He is no longer on constant telemetry (heart rate, ECG/EKG, o2 sat monitoring, blood pressure, etc.), which is nice. Less things to worry about when getting up.

One big piece of news today..... Aaron got BOTH of his chest tubes out this morning!!! He is chest tube free. Two less tubes in his body to worry about and deal with! He said it was incredibly comfortable and painful, which I can only imagine especially watching them remove them. Because his oxygen saturation were pretty low (90% or so), they didn't want to give him anything beforehand- he has nothing for pain, except tylenol, as narcotics tend to suppress breathing, make you sleepy, and drop your oxygen sats more. They didn't want to take a step backwards and start putting him on more oxygen just to get the chest tubes out. I can see their point, but I can't imagine it was a pleasant feeling. At least the thoracic surgery fellow that pulled them has had a few before, so he knows what it feels like.

His oxygen sats have been holding fairly well on 3 liters of oxygen. They were around 90-91% this morning, and mid-upper 80s (a little low) when up or moving around, but that was mainly due to pulmonary edema/fluid in his lungs. After a couple doses of lasix (a diuretic) and removing close to 5+ liters of fluid off his lungs and out of his tissues, his oxygen sats are more like 95-98%, which is where they should be. Hopefully, they can start weaning him off oxygen day by day. He will probably be on Lasix or other diuretics for a while, even when he goes home to keep his lungs dry.

There are a few reasons that he keeps getting pulmonary edema/fluid: the high dose IV steroids he is on to treat the rejection and inflammation in his lungs causes him to retain water; his kidney function/creatinine aren't great, causing his kidneys to work less efficiently and need more help removing fluid from the body; with lung transplants, and Aaron in particular (because his left lung from his first transplant was chronically collapsed, the body kind of encapsulated it, causing it to calcify, so they had to do a LOT of scraping and cutting to try to get the lung out during transplant, making as much space as possible for the new lung), they end up cutting some of the lungs' connections to the lymphatic system, which would drain the fluid off if the connections were still there, but since the have been severed, the fluid tends to collect  in the lungs; the rejection, infection(s), pneumonia, inflammation, pneumonitis injures the lungs, and what can happen is that the fluid tends to end up going to the site of the "injury"; and lastly, especially since being on the ventilator and unable to take his pills, they switched a lot of his meds, particularly some oral antibiotics, to IV, and many of them are mixed in quite a bit of saline or sugar water, so he is getting a lot of fluid through all of his IV meds, ending up overloading him, not to mention what he is eating/drinking (still just on a full liquid diet, but hoping to advance to a mechanically soft diet, or something similar today) and the constant tube feedings he is getting. Because of all of those factors stacking up on top of each other, you end up with quite a bit of fluid in your lungs.

They are hoping that the lasix will help jump start his kidneys, and many some of the medication changes will give his kidneys a bit of a break as well. Many of the antibiotics and transplant meds/immune suppressants are processed through the kidneys, really stressing them after years of these necessary medications. Most post-transplant patients, I know for sure with lungs, are NOT allowed to take any anti-inflammatoriesinflammatories/NSAIDs, such as ibuprofen, aleve/naproxen, aspirin, etc. only tylenol because the NSAIDs are processed through the kidneys. They try to save the kidneys for other medications. It is a delicate balance of trying to give the medication and at the dose it needs to be, without burning up/over-taxing your kidneys. I think that we need to make an appointment with a nephrologist after Aaron gets out of the hospital (which won't be anytime in the next day or so, probably another 4+ or so days), to see what we can do to better protect and preserve his kidneys.

  He hasn't been sleeping much, and is absolutely exhausted. It is much quieter up on this floor, so hoping he will get more rest. After the rough day today with all of the fluid, he didn't get up to walk, just the bathroom was a big effort for him, but he is planning to start walking more today. The big incentive for walking is that they can stop the daily lovenox injections, which helps prevent blood clots in people who are in bed and not moving/walking around very much. They wanted him to try and sleep with the bi-pap tonight to keep his lungs open, but after a good 30-40 minutes of it, he realized there was no possible way for him to sleep comfortably, and sleep is the most important thing right now. His sats are fine, he's not short of breath, so it's not like he absolutely has to wear it. His is doing ok with just the nasal cannula. I think that's about all of the news for now.

We still don't really have a concrete answer to what caused all of this in the first place. The findings on the open lung biopsy were kind of inconclusive. Nothing grew out on the cultures, and the biopsy doesn't show infection or rejection. Based on the steroids working and everything else, we all believe that rejection played a big role in that. Because he has had soooo much immune suppression, rejection doesn't show up looking like you would expect in someone else that hasn't had the same chronic rejection treatments that he has had. They may never have a true or good answer for what happened, which frustrates us and the doctors, but as long as something they did worked, which it seems to have, then we're fine with it. Hoping he gets a good night's sleep and feels better in the morning. We are sticking to baby steps and taking a day at a time.

Anyway, I think that's it for now. Sorry for the length. Crammed a lot of stuff in there, and I know I am wordy! I'll get back to blogging and explain the whole situation and the past 5 weeks, hopefully soon. Been a lot going on and a lot to cover, so it may take me a while to make sure I don't miss anything. Please keep praying and sending positive and healing thoughts to Aaron. He has a long way to go, but between his fighting attitude and strength, plus the many prayers and outpouring of love and support have helped/are helping get through this rough patch. Hope everyone has a good Sunday, and thanks again for the love and support. It means more than you will ever know.

Resting Up and Good Friends

So before I post my whole RSD Story, I thought I would wrote a shorter update on us. Like I said previously, Aaron played in a golf tournament for The Lung Transplant Foundation and did fairly well. I was extremely proud of him for playing all 18 holes in the heat and humidity. He has had a lot of fatigue and shortness of breath lately that has been making it difficult for him to do things. He almost decided not to play, but after some convincing from me, he decided to stay in it. I think he is glad he did, even though he was EXHAUSTED afterwards.

Both of us had kind of had a lazy beginning of the week. Monday was a rest and recovery day for Aaron, and I was still fighting the pain flare. Tuesday I had to meet with the rep from St. Jude ANS about my spinal cord stimulator (for those that don't know what it is, it's basically two thin wires (leads) that are inserted into the epidural space of my spine. The leads trail down, are anchored to my spine, and are then tunneled under my skin to the "battery" or IPG- Impulse Generator. The reps program this generator, which also is part recharageable battery with specific settings to try to "cover" the areas of pain. It feels like a mesaging sensation, though it's very difficult to describe the feeling. Basically the idea is to interrupt pain signals as they travel up the spinal cord before they get to the brain). My stimulator works ok, it could be a lot better. It doesn't cover my back and hips, only my legs. If I wanted back and hip coverage, I would need a new system. It would be pretty major surgery as they would have to perform a laminectomy- removing part of one of the bones of my spine and scoop out the scar tissue blocking the epidural space, so they could put the leads there. I am really, really not ready for that, and don't want anymore back pain and problems than I already have. Anyway, I met with the rep on Tuesday, as I do from time to time, to tweak the settings to get the maximum relief and benefit from it. The past two times I haven't met with the rep I have been working with for over two years. The last time I met with some guy who was more interested in trying to sell me a new system and wanting me to have the surgery I talked about above then making what I have now work. I will NEVER meet with that guy again. The guy I met with Tuesday at least didn't try to sell me anything, but I think he screwed up my settings pretty bad. I don't know that he knew exactly what he was doing and really didn't understand what I was trying to tell him. I ended up with something that was a little better, but not really. He completely forgot about my right leg, though. I might have to go back and see my normal rep since when I lay down my legs twitch and jump from my stimulator and I have been getting horrible cramps in my back when it's been on, which is almost constantly. Whatever he did for settings is eating up my battery life, and I will be recharging my battery ( I have a rechargeable unit that has an antenna that is placed over the skin on my battery site, and it slowly charges the battery over 2 or so hours- depending on how low I let it get).

Today we went and had lunch with a group of really good friends. We have become close with a lot of people in the Duke Cystic Fibrosis/Lung Transplant group. There is an amazing community down here, and because of that, we have become close to many of them. When we moved down here (North Carolina) from Maine for Aaron's 2nd transplant, we really knew no one, but through the wonderful community that Duke has built, we met some wonderful people who can relate to our experiences. They are truly some of the strongest people I have met, and they continue to inspire me on a daily basis. They are such a wonderful group of people, and we are so thankful to have them in our lives. Mass General certainly did not have that kind of atmosphere and community, and really didn't know any other transplant people. It would have been very lonely for us down here, otherwise, since our families are still in Maine, and we only get to see them a few times of year.

I think the rest of the week is just relaxing. Aaron has a 4 hour infusion tomorrow that he gets every 3 months to help prevent chronic rejection and help his non-exisitant immune system to fight off anything that may get him sick. I am still struggling a little with the pain flare. Today was the best day out of the entire week so far, but that's not saying much. I know this heat and humidity we are having certainly isn't helping. It feels like August outside right now. My deck/patio/balcony container garden is not liking the high heat, and desperately needs water. I have never seen the soil dry out so quickly, even with the water holding crystals I have. I am also hoping the water at the pool is warm enough for me to go swimming (cold is extremely painful, and if it's still too cold, I won't be able to go in). I can't wait to get my paperwork signed so I can go back to aqua therapy (well member swim since I insurance will no longer pay for me to continue seeing a physical therapist. I wasn't making enough progress, and my pain levels were still staying around an 8/10 on most days. It definitely helps with the stiffness and muscles issues from the fibromyalgia. Hope everyone has a good rest of the week, and manages to stay cool. We won't be outside much! My RSD Story is up next!