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
Saturday, August 27, 2011
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:
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
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
Thursday, August 11, 2011
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!
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!
Sunday, July 17, 2011
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.
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.
Thursday, June 9, 2011
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!
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!
Monday, June 6, 2011
Weekend, The Spoon Theory and Pain
First off, I wanted to say forgive me if any of this is gibberish or doesn't make much sense. I am running on Absolutely no sleep last night, and I spent an hour earlier writing this blog post and ended up losing it. It was completely done, but I wanted to re-read it and make sure there were no typos, but in between there and an attempt at a nap, the majority of the post was deleted. It has been a tough day pain-wise. I have been in quite a pain flare since yesterday.
This weekend (well Friday evening) started out great. What was supposed to be a busy weekend, only ended up partly so for me (Aaron was much busier). It ended up being interrupted by a monster "pain-flare," but at least I got to enjoy part of it. We went to see the Pawtucket Red Sox play the hometown Durham Bulls with friends of ours (AAA minor league baseball. They are the farm teams for the Boston Red Sox and the Tampa Bay Rays).Aaron and I were very torn about who we were going to cheer for and support, as we are die hard Boston Red Sox Fans (have been born and raised in New England), but we have made our home in Durham (can't believe we have been here almost 3 years!!) and wanted to support the home team as well. Aaron was a walking contradiction with a Red Sox shirt and a Durham Bulls hat. We ended up cheering for both teams, much to our friends' dismay. The Paw Sox ended up winning 6-3. We got to see two Boston players who were spending some time in the minors- Marco Scutaro and Hideki Okajima, which was really neat. The best part of the night, in my opinion, were the fireworks after the game. The Bulls have fireworks after every Friday home game. I wasn't expecting a whole lot with it being almost a weekly occurrence, but I must say I was very pleasantly surprised by a fairly long and great show. It wasn't just one here or there, it was several at a time for at least 7-8 minutes. I never knew so many fireworks could fit on such a small "trailer" parked in the middle of the field. If I can figure out how to upload a slideshow of photos on here, I will post some pictures from the game and fireworks. For now, here is a picture from the fireworks display:
This weekend (well Friday evening) started out great. What was supposed to be a busy weekend, only ended up partly so for me (Aaron was much busier). It ended up being interrupted by a monster "pain-flare," but at least I got to enjoy part of it. We went to see the Pawtucket Red Sox play the hometown Durham Bulls with friends of ours (AAA minor league baseball. They are the farm teams for the Boston Red Sox and the Tampa Bay Rays).Aaron and I were very torn about who we were going to cheer for and support, as we are die hard Boston Red Sox Fans (have been born and raised in New England), but we have made our home in Durham (can't believe we have been here almost 3 years!!) and wanted to support the home team as well. Aaron was a walking contradiction with a Red Sox shirt and a Durham Bulls hat. We ended up cheering for both teams, much to our friends' dismay. The Paw Sox ended up winning 6-3. We got to see two Boston players who were spending some time in the minors- Marco Scutaro and Hideki Okajima, which was really neat. The best part of the night, in my opinion, were the fireworks after the game. The Bulls have fireworks after every Friday home game. I wasn't expecting a whole lot with it being almost a weekly occurrence, but I must say I was very pleasantly surprised by a fairly long and great show. It wasn't just one here or there, it was several at a time for at least 7-8 minutes. I never knew so many fireworks could fit on such a small "trailer" parked in the middle of the field. If I can figure out how to upload a slideshow of photos on here, I will post some pictures from the game and fireworks. For now, here is a picture from the fireworks display:
Saturday was a day of necessary relaxing and recovering. Living with chronic illness is a balancing act. There always has to be some give and take. For example: I can usually got out and do something one day and may not "pay for it," or have extra pain because of it if I rest the next day, but if I were to spend two days going out and doing something without a rest break in between, I will usually end up "paying for it" in extra pain, fatigue, and some immobility due to the pain. It is always a balance of trying to live your life, get out of the house and do something you enjoy, and overdoing it. The tough thing is the days when you don't feel as bad as you normally do (also knows as a "good day," which are far and few in between), you have to remind yourself to take it easy and not do too much .It's east to go overboard as you that "good days" don't happen often and you want to take advantage of it while you can, doing everything you were saving for the above mentioned "good day." There are so many things I save for the day I have less pain and more energy, and most of the time I end up overing and ending up in a pain flare unable to do many of the basic things. You would think after almost 8 years I would have figured it out by now, but I am stubborn and know I have to take advantage of the "good days" since they don't come around very often. I usually end up asking and relying on Aaron to do things that require me to stand, walk, bend down, or a lot of movement. I absolutely hate that feeling, and I REALLY hate feeling useless. I truly don't know what I would have done/do if I ever found/were to find myself in a situation where I was living alone with no help- there are many days when even walking to the kitchen and preparing a simple meal is too much for me. I have definitely come to rely on Aaron more that I want to admit and more that I like, but I have little choice. I am so thankful to have him, and I don't express my gratitude often enough.
Speaking of balance, I do want to mention something called The Spoon Theory. This was written by a young woman who has Lupus, but it really and truly can apply to anyone that has limitations due to a chronic illness and/or chronic pain. I, myself, do not have Lupus, but have several different chronic pain conditions (I pretty much now have constant and severe full body pain that never goes away. I've been living with it for almost 8 years now, and it never drops below an 8 into the bearable range). I came across The Spoon Theory several years ago when I was still angry about my disease and the "life sentence" that came with it. I didn't know anything about balance, and I struggled with very severe depression. I spent most of my time in bed or sleeping because it was better than feeling the pain and dealing with the disease and my depression. Finding The Spoon Theory somehow put words to my struggles and allowed me to share with others my limits in a tangible way that they could understand. Most had never know illness, severe and chronic pain, fatigue and having to set limits on what they could do. It also reminded me that overdoing it on some days, short-changed me the next day or two, or sometimes even longer than that. I didn't want to accept that I had limitations and that I may have to pick and choose what I wanted/was capable of doing, saying "no" to something I really wanted to do and was looking forward to- what college student/20-something year old does? The basic principle of The Spoon Theory (link above) is that someone with a chronic illness (Lupus in the author's case) starts a day with so many "spoons" (i.e. energy, possibilities, etc.) unlike someone healthy who may have unlimited spoons in a day. Someone with a limited number of spoons has to plan out how they want to spend those spoons during the day. Every little thing and activity you do has consequences and takes a least one, maybe more spoons- including getting out of bed, showering (which is also extremely painful and cannot be done daily), getting dressed, doing your hair, preparing meals, leaving your house/apartment, spending time with friends, going to the store, appointments, etc. Towards the end of the day, you may find you only have one or two spoons left and you have to decide how you want to spend them, possibly choosing between preparing a nice, healthy meal for yourself or trying to do something fun. Sometimes during the course of a day, you inexplicably lose spoons depending on how you are feeling, but once you lose a spoon, there is no getting it back. Some days like today for me, when your pain has kept you up all night and you have gotten very little or no sleep, you will start that next day with even less spoons. You can't rally try to "stock-pile" spoons and save them for the next day, but occasionally you can try to borrow spoons from a future day, but you will end up short-changing yourself in the end-sometimes it is worth it, and sometimes it isn't. You won't know that until well after you have made that decision. As I said before, it's a delicate balance. Sometimes it's like walking a tight-rope making sure not to have any missteps so you don't fall over the edge. The Spoon Theory is something that anything with a chronic illness can relate to, and it really helps us explain to those of you that are healthy with unlimited energy and possibilities what i forgranted t's like to have walk in our shoes and have little energy, making them think about every little task you may take forgranted or you may think is mundane- like cooking, showering, getting dressed, etc. Many people don't realize the effort those "simple tasks" take for some people. The lack of good, restorative, quality sleep for those with chronic pain/illness make those tasks even more difficult, making them feel like a production just to do them. Most of us with chronic pain have severe, sometimes debilitating and chronic fatigue. I can't remember the last time I felt like I had energy or woke up feeling rested. We all need the deep, restorative sleep for the body to heal itself, but those with chronic pain often don't get that, and the body can't fix itself, perpetuating the cycle. I would really suggest that everyone takes time to read The Spoon Theory for themselves. I have printed out a copy and put it on the fridge to remind myself that I am not and cannot be "Superwoman," and to give others who are completely healthy an idea of what it feels like to live in our world. I find many people understand me and my choices a lot more after reading it. I also waned to provide a few other links for your reading pleasure about RSD/CRPS (Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome- same disease, two different names), and what living with RSD/CRPS feels like. My next post will be more about my RSD and my "RSD Story," but some of these go along with The Spoon Theory. The first one is A world with RSD/CRPS as your constant companion, which was written by a fellow RSDer and friend of mine (She uses her injury and location of her RSD, I believe she has full body RSD now, but it started in her hand, while mine is mostly in my feet, ankles, legs, hips and back, with some pain in my hands, wrists, shoulders and chronic migraines, which is more likely fibromyalgia pain- or at least I am hoping that's the case, since I dread another spread of this monster. It has enough of my body- from upper back down. Anyway, this is a great account of what we live with on a daily basis). The second one is written by the founder of RSDHope- What does RSD/CRPS feel like? (there is only one big change from what was written there. He refers to the Old Version of the McGill Pain Index, which was developed as a way to gauge some types of pain from others (i.e. childbirth/labor, spontaneous amputation of a finger, neuropathic pain, cancer pain, etc). RSD is listed as Causalgia on the graph, which places it as the most painful and severe type of chronic pain known to exist. The McGill Pain index has recently been changed and upgraded, and RSD has been rated even higher on the scale than it did before (it used to be a 42 out of 50, and I can't find the new number, but I think it's 45). I do want to mention that I don't want to sit here and compare pain. Pain is very real and a very personal and individual thing. The only frame of reference for pain is our own- one reason I absolutely hate the pain scale, since my tolerance may be higher or lower than someone else's, making my 5 someone's 1 or even someone's 20. It's not a very good gauge or measure. We may have different pains, but pain is pain and is real to you. YOur pain may be aching or sore, which I have burning, shooting stabbing pain. My 10 might be your 2 or your 20. It really depends on the person, and I never want to belittle our pain or make you feel like the pain you are experiencing is wimpy and nothing compared to me. You are feeling that pain here and now, and the only frame of reference is your own, and your tolerance and coping with it is your own as well. I hate it when people are afraid to tell me they are in pain, or don't want to tell me because they feel like they are whining, sine I live with constant pain. It's a frustrating situation, and I always want to validate your pain. So many of us are made to feel like we are crazy or it's all in our heads, and I never want to do that to anyone else. Anyway, moving on...
On Sunday, The Lung Transplant Foundation (the LTF) held it's first annual Fred Krenrich Golf Tournament (Fred is post-lung transplant and came up with the idea and helped plan the tournament, but eventually had to withdraw from planning. Fred has been battling chronic rejection, and is not a candidate for a second double-lung transplant. He recently moved back to be with his family, and is now in hospice, so the tournament was named in his honor). The Lung Transplant Foundation was founded a few years ago by a group of lung transplant recipients from Duke University Medical Center (where Aaron had his second lung transplant) to promote and help advance research being done to improve outcomes among lung transplant recipients. This is the second big fundraiser the LTF has done, the first being Lungapalooza: A Walk or Breath, which will be held for the second year in Septemeber. Money raised by the LTF goes towards research grants that deal specifically with lung transplant and rejection issues. Lung transplants are the least successful solid organs transplanted. Many feel that because the lungs are the only solid organ exposed to outside air, that this must somehow be related to poor outcomes and low long-term survival rates. It is a very delicate balance of keeping someone immune suppressed enough so they don't reject their new organ, but not so much that they can't fight off any opportunistic infection. They also need to be careful of high dosages of immune suppressants because over time they can destroy the kidneys, and a person may end up needing a kidney transplant as well. There are currently no cure or sure-fire treatment for chronic lung rejection (Bronchiolitis Obliterans Syndrome or B.O.S.). Doctors can stabilize chronic rejection and hopefully stop it from doing any more damage to the donor lungs, and if caught very early, maybe even reverse some of the damage. The reason this foundation is so near and dear to us is because Aaron has had two lung transplants for Cystic Fibrosis- a living donor double lung transplant and a single lung re-transplant, and is currently dealing with chronic rejection of his "new lung." He is involved in helping plan events and promoting the Lung Transplant Foundation through digital media. His chronic rejection seems to be stable for now, but he has lost a lot of his lung function because of it. The only "treatments" they currently have (and most centers do nothing and don't use these medications) are very harsh chemotherapy agents that pretty much destroy your white cells and immune system. They have pretty much given him what they equate to Chemical AIDS, since one of the medication attacked those same cells. They also tried to destroy many of his antibodies with other chemotherapy agents in order to stop those from attacking his new lungs, but these treatments have left him with almost no immune system and with no way to fight off opportunistic infections (infections that you and I would never get because our immune system fights it off before we ever get sick). It can take well over a year (it will be much longer than that in Aaron's case) to build back up your immune system enough so that you are no longer an infection risk to yourself and aren't as likely to pick up the opportunistic infections. We will breathe a sigh of relief once his white counts come back up. We are hoping that his chronic rejection will continue to be stable, and that we won't have to figure out what next, or God forbid a third lung transplant, which is extremely rare. I am hopeful that this organization will be able to fund research studies that will find out the cause and mechanism for chronic rejection, which could have implications for other solid organ transplants as well, at least until growing back a healthy replacement of a damaged organ because a main-stream reality.
Anyway, back to the Golf Tournament. Aaron played in the tournament on Sunday, and while I really wanted to help volunteer or at least go for the dinner afterwards, it ended up not happening. I knew from the beginning that there was no possible way for me to volunteer, since I would be on my feet from 7AM until at least 5 or 6 PM. I knew that was way too much for me, so I was hoping to meet Aaron for the dinner afterwards. When I got up Sunday morning, I knew that that would be impossible due to this massive pain flare. I was so disappointed that I had to change my plans yet again. I know it wasn't a big deal, but I just get so tired and frustrated of canceling and changing my plans at the last minute. I really hate planning ahead because I never know up until that day or sometimes even just hours before if I will truly be able to go. I feel like I am giving in to the pain sometimes when I cancel, but I have to listen to my body, no matter how much I want to ignore it. Sometimes I do push on, but many times I just end up staying home so I don't make things worse. It just feels like such an incredibly common occurrence for me, and I worry I am letting down my friends and family at times. I have slowly learned my capabilities and what my body is able and willing to do, though sometimes I still ignore them. I hate having to say no, or not showing up. My mind and body don't always agree. I have learned that it doesn't matter what people think about certain things, like my sleep patterns. Most of the time I can't sleep when "normal" people sleep, and have just learned to sleep when I am able- if that's during the middle of the day instead of at night, then that's what I have to do. It's not worth punishing my body in order to try to have a "normal" sleep schedule. No matter how hard I try, it just never works. I also know that if I need to lay down and take a nap, then I need to do just that if at all possible. It will go a long way in helping my mind and mental clarity, and many times severe fatigue and complete and total lack of sleep just drive pain levels up even more. You always hear people say listen to your body, and they are right, so while I hate that I couldn't go, I know where I needed to be. My pain would be exponentially higher (I'm already in a flare as it is) if I had gone anyway, so it was better for me to take care of me.
On a happier note, we have a family of House Finches that have made a nest in the rafters of our balcony, under the balcony upstairs. Aaron and I have grown fond of them and feel like the proud parents ourselves. There are 4 or 5 babies in the nest, and mom and dad are frequently coming in and out bringing food. You always know when food has arrived since they all start chirping. I imagine they are saying, "Hey! I want some food! Come on Mom, me me me." They are just the absolutely cutest little fluff-balls, and you often see them sticking their heads up from the nest with their beaks wide open. The nest is up pretty high so we don't have a completely clear view into it, but we can see Mom and Dad and the heads and beaks of the little ones, especially when it's feeding time. We have definitely grown attached since we saw the beginnings of a nest a month or two ago. Here are some pictures of Mom and the babies:
Mom watching over her nest
Little head and beak peaking out of the nest
Two little heads and beaks peaking out looking for food
Anyway, I think that's about it. I think it will be a fairly quiet week. I go tomorrow to get my spinal cord stimulator adjusted to see if we can tweak a few things to help me get better coverage and relief. I am extremely doubtful that that will be the case, but I can always dream and hope. The leads just aren't up high enough (due to scar tissue blocking the way- don't want major spinal surgery, with them removing a piece of my spine and the scar tissue in order to fix it. It's not guaranteed to help either), so I have to live with what I do have. It does help, and I would be even worse without it, but it could be better. I am also hoping to get my paperwork signed by the doctor while I am there so I can start doing aqua therapy on my own. I "graduated" from aqua therapy because insurance doesn't pay to maintain and I wasn't making enough progress for them. I keep trying to tell that that I didn't get this way overnight, but it doesn't matter. At least once I get the paperwork signed, I can start going and doing it on my own, and Aaron will come with me occasionally to help me stretch and provide traction for my spine while I am in the water. I would highly recommend aqua therapy to anyone with chronic pain- my only advice is to make sure the pool is warm enough. I had to switch to a pool 10 degrees warmer (the pool I am currently going to is around 94 degrees) because cold and RSD don't mix. The "cold" 84 degree water was more painful than helpful, and I like my current pool and the program I was doing much better. I am hoping to start back soon because I miss it. Alright, I 'm sorry I was so long-winded. I am going to try to do my next post on my "RSD Story." As always, I appreciate any comments, constructive criticism or anything else. I am new to blogging and sharing my story and life with the world. I don't know how often I will write, but I will try to do it a few times a week, depending on how Aaron and I are doing. Thanks for reading!
Subscribe to:
Posts (Atom)