Anyone ever see the movie Dragonheart? The one with Dennis Quaid? Pretty solid movie, really. I'll get to why I'm asking in a moment The movie is about a young king who was stabbed in the heart as a young man. In order to save his life, a noble dragon played by Sean Connery, gives the young king half of his heart so that he would live. Over the years, the young king grew into a vicious tyrant. Blaming the dragon for the king's turn to evil, Quaid's character, Bowen, vows to rid the world of dragons by slaying every one he encounters. I'll get back to why I mentioned this later. I promise.
In early September, I started having more breathing issues. Around 2-3am, I would wake up from a sound sleep, unable to catch my breath. As long as I sat up, I could catch my breath and all would be fine again. This went on and off for a week or so when I decided to involve my doctors. After a few days of testing, an echo-cardiogram revealed heart failure. Don't worry...I'm just fine...wouldn't be making you read a blog post if I wasn't...but it was a heavy concern for us. For someone who's only 36, how does this happen? And the answer is...we don't know. And may never know. Our primary suspects are radiation and chemotherapy. We've read that just those 2 things combined can a have a delayed effect on certain people. Specifically, their hearts. Unfortunately, there's just not enough history or data to back this up. But that's my doctor's theory.
So, what did we do? And that answer was easy, at least coming from my doctors: we'll just add more drugs to the regimen. Awesome. They put me on a few low blood pressure drugs, a diuretic, and aspirin. They also put me on a low sodium diet, limited to 1500mg of sodium per day. Talk about rough for a guy who's always eating because of my steroids anyway. It hasn't been easy, but my breathing at night has been much better and I'm returning to normal. Whatever that is. I'm constantly redefining what's normal anymore.
I'm grateful to have survived an awful disease. I'm grateful for the care that has been given to me. But there are days when I feel very much like Bowen. In that, certain things have happened, that I can't change, and I need to place that anger and blame somewhere; That the world and my doctors are fumbling for solutions because my situation is unique compared to some; That I feel like a guinea pig for them to poke and experiment on. And I can't seem to catch a break sometimes with these drug additions. Good gawd. I'm taking over 20 pills a day now. How can anyone know how all these medications interact with one another? And in the long-term? We don't. We just have to keep our faith in that my doctors...all 17 of them...are all on the same page. Shouldn't be too hard, right? Nah. Next, I'll start doing differential equations just to change things up a bit. Till that happens, I'm officially counting my big-ass pill box as added square footage onto my house's value. Seriously. The thing should have its own zip code and fire department. Later taters.
This weekend marks my 3rd anniversary of my bone marrow transplant in 2009. It doesn't feel like it's been that long, but it has. It's been a wild ride over the last few years, but overall, I'm doing quite well. Thanks to the transplant, I'm still in remission and getting a little stronger every day. In the last few weeks, I've probably felt better than I have since the start of treatment 3 years ago.
In April, I started a program called Pulmonary Rehabilitation. It's basically a fancy term for a workout session, while they monitor my saturation (oxygen levels) and my blood pressure. It's an hour long each time, 3 days a week. It's mostly treadmill work with the use of rowing machines, bikes and weight lifting. I hate exercise and I always have. But I can honestly say that I do feel better because of it. My breathing has improved a little, but what's more become more affected is my energy levels. I feel that when the days go on, I have more continued strength to do the things I want to do or need to do.
I haven't really mentioned this publicly yet, but I will now. A few months back, we finally made contact with my donor. Yes, THE donor. I will not mention her identity here, but we've shared stories over email and pictures. We are anxious to meet her someday in person. She seems like a delightful person and we're looking forward to learning more about one another. It's amazing how long it actually takes to establish a link between parties, but the hospitals have those privacy policies in place to protect both sides. And with good reason.
So...this weekend, sit back. Relax. Have a drink. Or two. Or five. Enjoy the weather. Stop and smell the roses. Why? Because you CAN. We're going to. Because put simply, 3 years ago tomorrow, my donor gave me the ability to continue on with my life to enjoy these times. And by golly, that's what I'm going to do.
This post is going to sound like a huge rant and it kind of is, but I'm going to add my saving disclaimer to it, the better than death approach, and then all will be right in the world. Trees will explode with leaves again, it'll stop snowing, and I'll pretend I'm on a lake somewhere on a Summer day with a fishing pole in my hand. Or, a camera. Either one.
So far, in the last year, my feet still burn and hurt from day to day. It has gotten slightly better, but not much. My eyes are completely tweaked. At 36, I've now had cataract surgery on both eyes. At a distance, I can see okay. Up close, not so much. So I've become one of those people who constantly says, 'Wait, let me grab my glasses.' I also developed Osteoporosis. My hair is drastically thinning. And now, I'm at HIGH risk for developing Diabetes. I start a new drug to combat that tonight. More drugs. Ugh. Here it comes. Wait for it. It's better than death.
Who do I have to thank for all this? Steroids, and all the other drugs. Which, I thought I'd go into while I'm here, to give you all some idea of the craziness involved with these medications. Below is an actual photo I took of all the drugs I'm now on. Once a day...every day. It's a shame these aren't colored more like Skittles.
The list is as follows:
-Prednisone. Evil. Helpful, yet sinister.
-Acyclovir. Anti-viral.
-Bactrim. Antibiotic.
-Prograf. Immune suppressant.
-Sacrolimus. Immune suppressant.
-Fosamax. Osteoporosis.
-Fenofibrate. Cholesterol/Triglycerides.
-Crestor. Cholesterol.
-Amlodipine. Blood pressure.
-Diflucan. Anti-fungal.
-Penicillin. Antibiotic.
-Metformin. Diabetes treatment.
-Ambien. Can't sleep without it because of the steroids.
Believe it or not, this list used to be longer! Since starting the Prograf again, I'm incredibly thirsty too. My drink is never far from my reach and I will mow you down if you come between me and it. Things could get ugly. But hey, it's better than death.
Anyone ever see the movie Dragonheart? The one with Dennis Quaid? Pretty solid movie, really. I'll get to why I'm asking in a moment The movie is about a young king who was stabbed in the heart as a young man. In order to save his life, a noble dragon played by Sean Connery, gives the young king half of his heart so that he would live. Over the years, the young king grew into a vicious tyrant. Blaming the dragon for the king's turn to evil, Quaid's character, Bowen, vows to rid the world of dragons by slaying every one he encounters. I'll get back to why I mentioned this later. I promise.
In early September, I started having more breathing issues. Around 2-3am, I would wake up from a sound sleep, unable to catch my breath. As long as I sat up, I could catch my breath and all would be fine again. This went on and off for a week or so when I decided to involve my doctors. After a few days of testing, an echo-cardiogram revealed heart failure. Don't worry...I'm just fine...wouldn't be making you read a blog post if I wasn't...but it was a heavy concern for us. For someone who's only 36, how does this happen? And the answer is...we don't know. And may never know. Our primary suspects are radiation and chemotherapy. We've read that just those 2 things combined can a have a delayed effect on certain people. Specifically, their hearts. Unfortunately, there's just not enough history or data to back this up. But that's my doctor's theory.
So, what did we do? And that answer was easy, at least coming from my doctors: we'll just add more drugs to the regimen. Awesome. They put me on a few low blood pressure drugs, a diuretic, and aspirin. They also put me on a low sodium diet, limited to 1500mg of sodium per day. Talk about rough for a guy who's always eating because of my steroids anyway. It hasn't been easy, but my breathing at night has been much better and I'm returning to normal. Whatever that is. I'm constantly redefining what's normal anymore.
I'm grateful to have survived an awful disease. I'm grateful for the care that has been given to me. But there are days when I feel very much like Bowen. In that, certain things have happened, that I can't change, and I need to place that anger and blame somewhere; That the world and my doctors are fumbling for solutions because my situation is unique compared to some; That I feel like a guinea pig for them to poke and experiment on. And I can't seem to catch a break sometimes with these drug additions. Good gawd. I'm taking over 20 pills a day now. How can anyone know how all these medications interact with one another? And in the long-term? We don't. We just have to keep our faith in that my doctors...all 17 of them...are all on the same page. Shouldn't be too hard, right? Nah. Next, I'll start doing differential equations just to change things up a bit. Till that happens, I'm officially counting my big-ass pill box as added square footage onto my house's value. Seriously. The thing should have its own zip code and fire department. Later taters.
This weekend marks my 3rd anniversary of my bone marrow transplant in 2009. It doesn't feel like it's been that long, but it has. It's been a wild ride over the last few years, but overall, I'm doing quite well. Thanks to the transplant, I'm still in remission and getting a little stronger every day. In the last few weeks, I've probably felt better than I have since the start of treatment 3 years ago.
In April, I started a program called Pulmonary Rehabilitation. It's basically a fancy term for a workout session, while they monitor my saturation (oxygen levels) and my blood pressure. It's an hour long each time, 3 days a week. It's mostly treadmill work with the use of rowing machines, bikes and weight lifting. I hate exercise and I always have. But I can honestly say that I do feel better because of it. My breathing has improved a little, but what's more become more affected is my energy levels. I feel that when the days go on, I have more continued strength to do the things I want to do or need to do.
I haven't really mentioned this publicly yet, but I will now. A few months back, we finally made contact with my donor. Yes, THE donor. I will not mention her identity here, but we've shared stories over email and pictures. We are anxious to meet her someday in person. She seems like a delightful person and we're looking forward to learning more about one another. It's amazing how long it actually takes to establish a link between parties, but the hospitals have those privacy policies in place to protect both sides. And with good reason.
So...this weekend, sit back. Relax. Have a drink. Or two. Or five. Enjoy the weather. Stop and smell the roses. Why? Because you CAN. We're going to. Because put simply, 3 years ago tomorrow, my donor gave me the ability to continue on with my life to enjoy these times. And by golly, that's what I'm going to do.
This post is going to sound like a huge rant and it kind of is, but I'm going to add my saving disclaimer to it, the better than death approach, and then all will be right in the world. Trees will explode with leaves again, it'll stop snowing, and I'll pretend I'm on a lake somewhere on a Summer day with a fishing pole in my hand. Or, a camera. Either one.
So far, in the last year, my feet still burn and hurt from day to day. It has gotten slightly better, but not much. My eyes are completely tweaked. At 36, I've now had cataract surgery on both eyes. At a distance, I can see okay. Up close, not so much. So I've become one of those people who constantly says, 'Wait, let me grab my glasses.' I also developed Osteoporosis. My hair is drastically thinning. And now, I'm at HIGH risk for developing Diabetes. I start a new drug to combat that tonight. More drugs. Ugh. Here it comes. Wait for it. It's better than death.
Who do I have to thank for all this? Steroids, and all the other drugs. Which, I thought I'd go into while I'm here, to give you all some idea of the craziness involved with these medications. Below is an actual photo I took of all the drugs I'm now on. Once a day...every day. It's a shame these aren't colored more like Skittles.
The list is as follows:
-Prednisone. Evil. Helpful, yet sinister.
-Acyclovir. Anti-viral.
-Bactrim. Antibiotic.
-Prograf. Immune suppressant.
-Sacrolimus. Immune suppressant.
-Fosamax. Osteoporosis.
-Fenofibrate. Cholesterol/Triglycerides.
-Crestor. Cholesterol.
-Amlodipine. Blood pressure.
-Diflucan. Anti-fungal.
-Penicillin. Antibiotic.
-Metformin. Diabetes treatment.
-Ambien. Can't sleep without it because of the steroids.
Believe it or not, this list used to be longer! Since starting the Prograf again, I'm incredibly thirsty too. My drink is never far from my reach and I will mow you down if you come between me and it. Things could get ugly. But hey, it's better than death.
